Here's the link:
http://www.timesonline.co.uk/tol/news/world/us_and_americas/article6964730.ece
Tuesday, December 22, 2009
Wednesday, December 9, 2009
A day in the life of Autism
I can't believe that I haven't written anything in over a month. My brain has been dry, my heart has been struggling...I haven't had the words to write and I haven't had the motivation to share them.
Then, there are days like today, that remind me where we have been on this journey, where we are and where we are going to. Days that remind me that my son is different. Days that remind me why I hate Autism and the people who don't understand Autism.
Autism....the ugliest word in the Dictionary.
These are my feelings; they are raw and true. Sometimes I speak truly what is on my mind; always do I speak from the heart.
Autism kills my spirit and the hopes I have for my son.
Sometimes, Autism defeats me. It is like a heavy rock that I can't pull off us. I have dreams of what my son's life will be like, especially when he's older and I may not be around to shelter him from the world that he tries so hard to understand but probably never will.
I know every parent wants to protect their child(ren)...well, I'm sure there are some parents that don't care... but for the parent of a child with Autism, the thoughts and the instinct that we have to protect our child runs deeper and is more powerful than those of the neuro-typical child's parent.
Today started out like any other day. Joey was on "Lego talking," also known as youtube Lego videos and I was getting ready to take him to school. We didn't have speech or OT today. I kept giving him a countdown to when we would be leaving: 30 minutes, then 20, then 5, then 2. He was already dressed so all we needed was to get socks and shoes on.
After I got his socks and shoes on, I noticed a distinct poop smell. My son has pooped a few times on the toilet (a miracle!) but it is not a regular thing for him yet. I asked him a few times if he had an accident and he said no. I checked for myself and it's a good thing I did because there was a huge hard rock of poop in his underwear. We were already running late so now we had to move quickly, which is a thing my son does not like to do. I got him dressed and got him in the car and away we went.
We got to school and his class was already lined up for lunch outside and departing to the cafeteria. We got out of the car fast and ran to join them. His teacher's aide gave me a look when I told her what happened and why were late. Like I needed to explain it to her? I was so annoyed, as I often am with this school because the staff seem to have no love or affection for any kids, let alone special ones.
I kissed Joey and off I went, hoping his day would be ok, but all I could remember was this sad looking little boy standing against the brick building, looking as if he was disappointed in himself. Did I make him feel that way? He's so sensitive so it's hard to tell. I try so hard to not let him know when I'm frustrated or mad or sad, especially when he is the cause of those feelings.
Fast forward to afternoon pick up. I get there 2 minutes late (thanks to crazy Christmas shopping lines) and once again, I find myself running to the school. I yell to a father to hold the door but do you think anyone would do that these days? NO! As I wait in line to sign Joey out, I see his smile through the door and his little voice say, "Miss Simo, I see my Mama. Miss Simo, my Mama's here." As she is ignoring him, I quietly tell him to wait his turn to talk and just then, some little kid who I don't recall ever seeing in his class, runs by Joey and knocks his cup of water out of his hand. It literally goes flying and water goes everywhere.
I speak softly, telling Joey that it's ok and that it wasn't his fault and he is visibly upset, crossing his arms and pouting. I quickly go back to signing him out so we can get out of there, when I realize the "cup hitter" is right below me and guess who his parent is? The guy who didn't hold the door for me earlier!!! I bend over and say "can you apologize to Joey for knocking the water out of his hand?" I get no reaction! The kid looks away, even after I said it twice and the bum father says NOTHING!!! Why should we expect kids to have manners when the people who are supposed to be teaching them have NONE!! At least a mom next to me said, "I hope it wasn't my kid who did it." At least I know someone is listening. But it's things like this that make me think, does the cup hitter have Autism and is not diagnosed? Or maybe another type of delay, because my son with Autism has better manners than most of the people I encounter on a daily basis. It's the blank stare that got me.
I'm glad that Miss Simo had the decency to bend down, get Joey's attention and say, "I know you didn't spill your water on purpose. I know it was an accident and it's ok. It's not your fault." He seemed better after that but he still just wanted to get the hell out of there.
Miss Simo went on to tell me that when they were playing a game of "Freeze Dance" and it was down to another boy and Joey and Joey lost, he got really upset. He can be like that, but not usually when me or his Dad are absent. He just seems to be having an off day. It's days like this when I worry most about him fitting in and being ridiculed for being different. I might be acting over-protective but I can't help but worry. Every parent wants their child to fit in and to have an easy time with peers but for our kids with Autism, it's a million times harder and half the time it's because the kids give up on trying to fit in, knowing that they will continually fail.
Joey seemed to have a better day as we left and headed to Neema & Grandpa's house. He was a little agitated from time to time and had an incident where he was walking and seemed to simply fall down unexpectedly. He hit his shoulder on a wicker cabinet, cried and ran into my arms but then was ok. I'm not sure if he had a seizure at that moment and if this is the root of the problem; if he's feeling out of it and not quite able to get a handle on life. I know it didn't help last week when he was so sick that he barely ate or drank so it was hard to get any of the required 3 daily doses into his little body. Maybe he is still feeling the after affects of that.
I don't know what it is but I do know that this too shall pass, tomorrow is a new day with new challenges and new triumphs and that it's always important to just breathe and remind myself that God would not have put me on this journey if he didn't think that I could handle it and that I could give Joey the best life possible.
Then, there are days like today, that remind me where we have been on this journey, where we are and where we are going to. Days that remind me that my son is different. Days that remind me why I hate Autism and the people who don't understand Autism.
Autism....the ugliest word in the Dictionary.
These are my feelings; they are raw and true. Sometimes I speak truly what is on my mind; always do I speak from the heart.
Autism kills my spirit and the hopes I have for my son.
Sometimes, Autism defeats me. It is like a heavy rock that I can't pull off us. I have dreams of what my son's life will be like, especially when he's older and I may not be around to shelter him from the world that he tries so hard to understand but probably never will.
I know every parent wants to protect their child(ren)...well, I'm sure there are some parents that don't care... but for the parent of a child with Autism, the thoughts and the instinct that we have to protect our child runs deeper and is more powerful than those of the neuro-typical child's parent.
Today started out like any other day. Joey was on "Lego talking," also known as youtube Lego videos and I was getting ready to take him to school. We didn't have speech or OT today. I kept giving him a countdown to when we would be leaving: 30 minutes, then 20, then 5, then 2. He was already dressed so all we needed was to get socks and shoes on.
After I got his socks and shoes on, I noticed a distinct poop smell. My son has pooped a few times on the toilet (a miracle!) but it is not a regular thing for him yet. I asked him a few times if he had an accident and he said no. I checked for myself and it's a good thing I did because there was a huge hard rock of poop in his underwear. We were already running late so now we had to move quickly, which is a thing my son does not like to do. I got him dressed and got him in the car and away we went.
We got to school and his class was already lined up for lunch outside and departing to the cafeteria. We got out of the car fast and ran to join them. His teacher's aide gave me a look when I told her what happened and why were late. Like I needed to explain it to her? I was so annoyed, as I often am with this school because the staff seem to have no love or affection for any kids, let alone special ones.
I kissed Joey and off I went, hoping his day would be ok, but all I could remember was this sad looking little boy standing against the brick building, looking as if he was disappointed in himself. Did I make him feel that way? He's so sensitive so it's hard to tell. I try so hard to not let him know when I'm frustrated or mad or sad, especially when he is the cause of those feelings.
Fast forward to afternoon pick up. I get there 2 minutes late (thanks to crazy Christmas shopping lines) and once again, I find myself running to the school. I yell to a father to hold the door but do you think anyone would do that these days? NO! As I wait in line to sign Joey out, I see his smile through the door and his little voice say, "Miss Simo, I see my Mama. Miss Simo, my Mama's here." As she is ignoring him, I quietly tell him to wait his turn to talk and just then, some little kid who I don't recall ever seeing in his class, runs by Joey and knocks his cup of water out of his hand. It literally goes flying and water goes everywhere.
I speak softly, telling Joey that it's ok and that it wasn't his fault and he is visibly upset, crossing his arms and pouting. I quickly go back to signing him out so we can get out of there, when I realize the "cup hitter" is right below me and guess who his parent is? The guy who didn't hold the door for me earlier!!! I bend over and say "can you apologize to Joey for knocking the water out of his hand?" I get no reaction! The kid looks away, even after I said it twice and the bum father says NOTHING!!! Why should we expect kids to have manners when the people who are supposed to be teaching them have NONE!! At least a mom next to me said, "I hope it wasn't my kid who did it." At least I know someone is listening. But it's things like this that make me think, does the cup hitter have Autism and is not diagnosed? Or maybe another type of delay, because my son with Autism has better manners than most of the people I encounter on a daily basis. It's the blank stare that got me.
I'm glad that Miss Simo had the decency to bend down, get Joey's attention and say, "I know you didn't spill your water on purpose. I know it was an accident and it's ok. It's not your fault." He seemed better after that but he still just wanted to get the hell out of there.
Miss Simo went on to tell me that when they were playing a game of "Freeze Dance" and it was down to another boy and Joey and Joey lost, he got really upset. He can be like that, but not usually when me or his Dad are absent. He just seems to be having an off day. It's days like this when I worry most about him fitting in and being ridiculed for being different. I might be acting over-protective but I can't help but worry. Every parent wants their child to fit in and to have an easy time with peers but for our kids with Autism, it's a million times harder and half the time it's because the kids give up on trying to fit in, knowing that they will continually fail.
Joey seemed to have a better day as we left and headed to Neema & Grandpa's house. He was a little agitated from time to time and had an incident where he was walking and seemed to simply fall down unexpectedly. He hit his shoulder on a wicker cabinet, cried and ran into my arms but then was ok. I'm not sure if he had a seizure at that moment and if this is the root of the problem; if he's feeling out of it and not quite able to get a handle on life. I know it didn't help last week when he was so sick that he barely ate or drank so it was hard to get any of the required 3 daily doses into his little body. Maybe he is still feeling the after affects of that.
I don't know what it is but I do know that this too shall pass, tomorrow is a new day with new challenges and new triumphs and that it's always important to just breathe and remind myself that God would not have put me on this journey if he didn't think that I could handle it and that I could give Joey the best life possible.
Wednesday, October 28, 2009
Halloween OT
Joey's OT has been Halloween themed for the month of October and they've been having so much fun. Joey had to walk balancing pumpkins on his head and even had to crawl over big pumpkins. He made a ghost out of plastic bags and a balloon. He's even worked on fine motor skills by cutting up small pieces of tissue paper, crumpling them up and pasting them on a foam ghost. He also had to make it through a Halloween maze, navigating different terrains and practiced trick or treating with another young boy.
I am so glad that Joey has had the opportunity to start OT because it is helping him tremendously.
I am so glad that Joey has had the opportunity to start OT because it is helping him tremendously.
Wednesday, October 14, 2009
To the outside world
Sometimes I wonder what it looks like to the outside world. Joey's Autism. Does it look like a typical child, throwing a fit, when in reality he's upset because a routine has been broken? Does he look like a sweet angel to the people who love him when he's having a good day, when they don't know the blood, sweat and tears that went into making sure his day went as planned so he would "behave appropriately" for the event or occasion?
I struggle sometimes with Joey's Autism. Some days are easier than others. Some days, I feel all alone...with my guilt, my sorrow, my feelings of loss. No one understands what it's like to have a child with Autism unless you have one yourself or care for and love a special child. The most sympathy and support I get are from people who understand. They either have worked with autistic kids or they know one. It's the Moms that I used to dance with 20 years ago, that I've reconnected with on Facebook, that help me out. It's my friend Jessica, who's son has Asperger's, who reminds me that I'm doing the best job I can. Occasionally, it's my family, who, as time goes by, are understanding more about Joey's Autism and what it takes to raise him and give him the best life possible.
This journey is tough and not for the weak. Although, I wouldn't change it for the world, I do wake up everyday wondering if I am doing the best job possible and wondering what his life will be like in the future. Only time will tell but I know that with each passing day, his life and the way he navigates it are getting better. Maybe I am doing an ok job after all.
I struggle sometimes with Joey's Autism. Some days are easier than others. Some days, I feel all alone...with my guilt, my sorrow, my feelings of loss. No one understands what it's like to have a child with Autism unless you have one yourself or care for and love a special child. The most sympathy and support I get are from people who understand. They either have worked with autistic kids or they know one. It's the Moms that I used to dance with 20 years ago, that I've reconnected with on Facebook, that help me out. It's my friend Jessica, who's son has Asperger's, who reminds me that I'm doing the best job I can. Occasionally, it's my family, who, as time goes by, are understanding more about Joey's Autism and what it takes to raise him and give him the best life possible.
This journey is tough and not for the weak. Although, I wouldn't change it for the world, I do wake up everyday wondering if I am doing the best job possible and wondering what his life will be like in the future. Only time will tell but I know that with each passing day, his life and the way he navigates it are getting better. Maybe I am doing an ok job after all.
Autism News: Coach Yourself Through the Autism Spectrum
Here is an article from the Autism News. Looks like a great book. I will definitely be picking this up. I think a lot of parents don't give themselves to breathe and are harder on themselves than they should be. I think this book will be a great boost for parents struggling to keep up in the world they have been thrust into.
http://www.theautismnews.com/2009/10/13/beyond-just-coping/
Beyond Just Coping
Counselor-coach offers hope for the future to families affected by autism
By Jim Hart The Sandy Post
Ruth Knott-Schroeder likes the small-town feel of East Multnomah County. She lives outside the urban area in east Gresham and sees some of her clients in her Sandy office.
The rest of her clients could be in another state or another country. It matters not to the professional counselor and coach for living. She can coach over the phone or in people’s homes. She also travels to speak at workshops and trains other coaches.
Because she has an 18-year-old son affected with autism, she has had to become an expert on that topic. And the first thing she learned was that autism affects an entire community.
A recent survey shows an increasing prevalence of the disorder – now about 11 in 1,000 children. Knott-Schroeder says everyone near a child with autism needs to understand what to expect and how to react. That group includes not just parents but siblings, other family members, neighbors and the wide circle of friends and schoolmates who are near the affected child.
With the education she has had, plus the practical knowledge gained at home while parenting an affected child, Knott-Schroeder has enough experience and knowledge to advise other parents and family members just beginning to live with the disorder.
Knott-Schroeder has capsulated the knowledge she gained from the “school of hard knocks” and placed it in a book, published by a London publishing company and available anywhere in the world through Amazon or directly from Knott-Schroeder.
The book is a guide for living with a child affected by any of five disorders in the spectrum of autism syndrome. She said its theme is learning more than just how to cope with this disorder, but also having hope for the future. That’s why she named her Web site “Cope to Hope.”
The book has sections on parenting a child with autism, parenting a sibling who does not have autism, parent care and long-term health of parents. She even describes how different the relationships are for mothers and fathers who have a child with autism.
Knott-Schroeder knows exactly what is happening in autism-affected households, and she can advise or model the best practices that will help children have good experiences in life.
Because the effects of autism on different families are similar, she has a personal way of knowing what other families are living with.
For 18 years, she has parented a child with autism who attends Gresham schools, and a 14-year-old child, also in Gresham schools, who is not affected by the disorder.
Through her experiences and knowledge, she knows family members and children with autism can live happily together.
When a child with autism reaches adulthood, he or she might have to live in a group home to receive the support and care needed. But whether they live at home or away, they’re still part of a family, and all members need support.
Knott-Schroeder’s book offers some of that support. It also reminds readers that – as with most diseases and disorders – early intervention and treatment is essential to optimum care and reduced effects.
The book, she said, is designed to provide hope and support for families and the entire community.
She also is available to offer individual or small-group counseling to families as well as serve as a networking resource for connections to other professionals in the metro area.
Knott-Schroeder earned a master’s in counseling and has worked at the autism clinic at Oregon Health & Science University. She also is in demand as a national speaker and coach trainer.
Knott-Schroeder is on the staff of River Ridge Counseling and Coaching Services in west Sandy, where she not only coaches families and individuals affected by autism but counsels individuals, groups and families as well as children in need of help with social interaction.
For more information, visit www.copetohope.com
Source: http://www.theoutlookonline.com/features/story.php?story_id=125548351150926500
http://www.theautismnews.com/2009/10/13/beyond-just-coping/
Beyond Just Coping
Counselor-coach offers hope for the future to families affected by autism
By Jim Hart The Sandy Post
Ruth Knott-Schroeder likes the small-town feel of East Multnomah County. She lives outside the urban area in east Gresham and sees some of her clients in her Sandy office.
The rest of her clients could be in another state or another country. It matters not to the professional counselor and coach for living. She can coach over the phone or in people’s homes. She also travels to speak at workshops and trains other coaches.
Because she has an 18-year-old son affected with autism, she has had to become an expert on that topic. And the first thing she learned was that autism affects an entire community.
A recent survey shows an increasing prevalence of the disorder – now about 11 in 1,000 children. Knott-Schroeder says everyone near a child with autism needs to understand what to expect and how to react. That group includes not just parents but siblings, other family members, neighbors and the wide circle of friends and schoolmates who are near the affected child.
With the education she has had, plus the practical knowledge gained at home while parenting an affected child, Knott-Schroeder has enough experience and knowledge to advise other parents and family members just beginning to live with the disorder.
Knott-Schroeder has capsulated the knowledge she gained from the “school of hard knocks” and placed it in a book, published by a London publishing company and available anywhere in the world through Amazon or directly from Knott-Schroeder.
The book is a guide for living with a child affected by any of five disorders in the spectrum of autism syndrome. She said its theme is learning more than just how to cope with this disorder, but also having hope for the future. That’s why she named her Web site “Cope to Hope.”
The book has sections on parenting a child with autism, parenting a sibling who does not have autism, parent care and long-term health of parents. She even describes how different the relationships are for mothers and fathers who have a child with autism.
Knott-Schroeder knows exactly what is happening in autism-affected households, and she can advise or model the best practices that will help children have good experiences in life.
Because the effects of autism on different families are similar, she has a personal way of knowing what other families are living with.
For 18 years, she has parented a child with autism who attends Gresham schools, and a 14-year-old child, also in Gresham schools, who is not affected by the disorder.
Through her experiences and knowledge, she knows family members and children with autism can live happily together.
When a child with autism reaches adulthood, he or she might have to live in a group home to receive the support and care needed. But whether they live at home or away, they’re still part of a family, and all members need support.
Knott-Schroeder’s book offers some of that support. It also reminds readers that – as with most diseases and disorders – early intervention and treatment is essential to optimum care and reduced effects.
The book, she said, is designed to provide hope and support for families and the entire community.
She also is available to offer individual or small-group counseling to families as well as serve as a networking resource for connections to other professionals in the metro area.
Knott-Schroeder earned a master’s in counseling and has worked at the autism clinic at Oregon Health & Science University. She also is in demand as a national speaker and coach trainer.
Knott-Schroeder is on the staff of River Ridge Counseling and Coaching Services in west Sandy, where she not only coaches families and individuals affected by autism but counsels individuals, groups and families as well as children in need of help with social interaction.
For more information, visit www.copetohope.com
Source: http://www.theoutlookonline.com/features/story.php?story_id=125548351150926500
Thursday, October 8, 2009
GFCF High Tea at Maggiano's November 8th in Scottsdale
Maggiano’s Italian Restaurant
16405 N. Scottsdale Road
Scottsdale , AZ 85254at the corner of Scottsdale & Frank Lloyd Wright
Some of the great items to be served are:
Harney & Sons Fine Tea’s; Maggiano’s Raspberry Lemonade; Bottled Waters; Chicken Salad Tea Sandwiches with Smoked Almonds on Gluten-Free Herbed Focaccia Bread; Herbed Maui Onion/Basil/ Tomato Tea Sandwiches on Gluten-Free Herbed Focaccia Bread; Fresh Fruit Plate; Vegetable Crudite with Tuscan Hummus; Lady Baltimores; Chocolate Covered Strawberries; Molasses Cupcakes; Parfaits with Cream and Fruit
$20 per person!
Everyone is welcome – All ages – The food is so good, you won’t know it’s GF/CF!
For more info: http://www.phxautis m.org/hightea. html
AZ Shopping Extravaganza at Anthem Outlets for ACT Today
LAST DAY to buy tickets for the Shopping Extravaganza at Anthem Outlets this weekend. Your $20 ticket gives you special discounts and 75% of it goes back to ACT Today, an organization that gives grants to families affected by Autism. More info on AZ Parents Autism Network on Facebook.
http://www.azacttoday.org/events/shopping_extravaganza/index.html
ONE DAY LEFT TO BUY TICKETS!!!Don't miss out on the fun... buy yours today
Purchase Tickets Online HERE!
Get the girls together and join us for a day of Shopping, Saving & Fun THIS SATURDAY! Tickets are $20 and include special discounts & offers, raffle, giveaways, lunch, baggage check, hospitality area and live entertainment. 75% of each ticket sale goes back to ACT Today!Over $30,000 in prizes will be given away!
When: Saturday, October 10, 2009
Where: Outlets at AnthemI-17 to Anthem Way, Exit #229Registration: 9:00 am – Noon
Exclusive Discounts: 10:00 am – 8:00 pm
http://www.azacttoday.org/events/shopping_extravaganza/index.html
ONE DAY LEFT TO BUY TICKETS!!!Don't miss out on the fun... buy yours today
Purchase Tickets Online HERE!
Get the girls together and join us for a day of Shopping, Saving & Fun THIS SATURDAY! Tickets are $20 and include special discounts & offers, raffle, giveaways, lunch, baggage check, hospitality area and live entertainment. 75% of each ticket sale goes back to ACT Today!Over $30,000 in prizes will be given away!
When: Saturday, October 10, 2009
Where: Outlets at AnthemI-17 to Anthem Way, Exit #229Registration: 9:00 am – Noon
Exclusive Discounts: 10:00 am – 8:00 pm
Wednesday, October 7, 2009
OT yesterday
Joey had another great OT appointment yesterday. They worked on drawing and coloring and did a Halloween craft called 5 Little Pumpkins. He did fine coloring but needed some guidance cutting and drawing. The therapist said to provide opportunities to color or draw while laying down or working on an easel because it forces him to rest his wrist instead of holding it up like he does.
Then, we did our usual Tuesday ritual of going to the "eating store" for Lunchables and then heading to school. At Fry's, Joey told me he wanted the green car wagon but I only saw the red car wagon. He was a little disappointed but then said the he was getting into the red one. The nice greeter heard him and said "I think the green car one is back." I didn't even know they had a green one! Joey was already comfy in the red one so I thought there would a meltdown from all the change but there wasn't! He hopped in the green one and off we went. Progress:)
Then, we did our usual Tuesday ritual of going to the "eating store" for Lunchables and then heading to school. At Fry's, Joey told me he wanted the green car wagon but I only saw the red car wagon. He was a little disappointed but then said the he was getting into the red one. The nice greeter heard him and said "I think the green car one is back." I didn't even know they had a green one! Joey was already comfy in the red one so I thought there would a meltdown from all the change but there wasn't! He hopped in the green one and off we went. Progress:)
Monday, October 5, 2009
New Statistics on Autism
I couldn't sleep this morning so I was flipping through the channels on TV. I stopped on CNN just as they were saying that a story was coming up about Autism. I was not too surprised by the new statistic: 1 in 91 kids has Autism or a related disorder (ASD). What shocked and saddened me more is that the statistic for boys is 1 in 58 boys and that Autism is found more in caucasians than any other race.
Reading through the article and absorbing the statistics, I wonder if the stats are getting worse because the awareness is getting better. I also wonder if the stat of 40% of the families surveyed said their kids lost the diagnosis is because kids are being misdiagnosed or there are underlying problems that are causing Autism-like behaviors.
Read the article here:
http://www.cnn.com/2009/HEALTH/10/05/autism.study/index.html
Reading through the article and absorbing the statistics, I wonder if the stats are getting worse because the awareness is getting better. I also wonder if the stat of 40% of the families surveyed said their kids lost the diagnosis is because kids are being misdiagnosed or there are underlying problems that are causing Autism-like behaviors.
Read the article here:
http://www.cnn.com/2009/HEALTH/10/05/autism.study/index.html
Thursday, October 1, 2009
2nd T-Ball Practice
Today's practice started off good. Bryan got home from work early so we all went as a family. When Joey got there, he wanted to wait for Daddy but I advised him that Daddy would be coming in a little bit. I did this on purpose because my ex can't make it to every game so I wanted Joey to get used to being there without him.
Joey then ran to the group of kids and said "wait for me!" He was so cute!
They warmed up and ran the bases. Then they stretched a little bit. My baby was so cute!
I helped out in the outfield as my little man took 2nd base. He was doing so great! He wanted to get every ball and he did...until a little girl grabbed the ball before him. That was it! He threw his mitt down and was done playing. Bryan even said that when he and my ex, Ben, were watching from the sidelines, Ben said "I hope that little girl doesn't get the ball before Joey." We all knew what would happen next.
Well, for the next half hour, me, Bryan and Ben were on the field more than Joey. He finally went back out but did not want to play. At least he ended up back out there. I know he doesn't have to do it but I want him to. I want him to play the game and be integrated with typical children. I want him to learn team work and competition and following rules from an early age. I want him to at least try and not give up. Letting him give up now is setting the precedent that he can quit anything just because he wants to. That would be a disservice to him throughout his life.
I'm glad that even though the coach interrupted our "extinction" attempt (ignoring his outburst), she came over at the end of the game, had Joey give her a high 5 and told him that the team needed him in the game on Saturday. That was great.
We'll see how Saturday goes!
On a side note, Joey does get his interests and skills from both of his parents. Last night, he walked and dance backwards, stating "they call this the Moon Walk, Mama. Boom Boom Pow." The student has become the master! Ha ha! I love watching Joey dance. He really gets into it:)
Joey then ran to the group of kids and said "wait for me!" He was so cute!
They warmed up and ran the bases. Then they stretched a little bit. My baby was so cute!
I helped out in the outfield as my little man took 2nd base. He was doing so great! He wanted to get every ball and he did...until a little girl grabbed the ball before him. That was it! He threw his mitt down and was done playing. Bryan even said that when he and my ex, Ben, were watching from the sidelines, Ben said "I hope that little girl doesn't get the ball before Joey." We all knew what would happen next.
Well, for the next half hour, me, Bryan and Ben were on the field more than Joey. He finally went back out but did not want to play. At least he ended up back out there. I know he doesn't have to do it but I want him to. I want him to play the game and be integrated with typical children. I want him to learn team work and competition and following rules from an early age. I want him to at least try and not give up. Letting him give up now is setting the precedent that he can quit anything just because he wants to. That would be a disservice to him throughout his life.
I'm glad that even though the coach interrupted our "extinction" attempt (ignoring his outburst), she came over at the end of the game, had Joey give her a high 5 and told him that the team needed him in the game on Saturday. That was great.
We'll see how Saturday goes!
On a side note, Joey does get his interests and skills from both of his parents. Last night, he walked and dance backwards, stating "they call this the Moon Walk, Mama. Boom Boom Pow." The student has become the master! Ha ha! I love watching Joey dance. He really gets into it:)
Tuesday, September 29, 2009
OT and Speech Eval today
Joey had another great day at OT. They worked on increasing upper body strength by doing wheel barrow exercises and climbing. Joey tried everything. On one thing that he was scared to climb around, the therapist assured him he didn't have to go through it and he was ok. He always afraid of losing his balance which goes back to his vestibular issues.
Then, we were off to Fry's for our normal Tuesday morning killing time routine. Joey didn't help me scan and bag items today but he was on his best behavior. On the way out, we ran square into the Monsters vs. Aliens DVD display. He is been waiting for months for this to come out on DVD. How could I say no to him?
After Joey got off the bus and we had some relaxing time (and movie time), Vanessa (from Horizon Pediatric - same place he goes for OT) showed up at our house to do a speech evaluation. We have been back on the wait list for speech since May but now that Joey has been approved for DDD and they require a formal speech evaluation, I figured let's at least get this out of the way.
She performed some tests similar to the ADOS and evaluation tests they do at Melmed. She also asked him to make several different sounds and simply monitored his play. She said that he is doing great and very age appropriate in his speech. She also said that he does not show spectrum-like tendencies. All of this was great news. She is still going to recommend speech therapy because the extra help couldn't hurt but she did say that he is ready for community preschool.
Overall, it was a fantastic day!
Then, we were off to Fry's for our normal Tuesday morning killing time routine. Joey didn't help me scan and bag items today but he was on his best behavior. On the way out, we ran square into the Monsters vs. Aliens DVD display. He is been waiting for months for this to come out on DVD. How could I say no to him?
After Joey got off the bus and we had some relaxing time (and movie time), Vanessa (from Horizon Pediatric - same place he goes for OT) showed up at our house to do a speech evaluation. We have been back on the wait list for speech since May but now that Joey has been approved for DDD and they require a formal speech evaluation, I figured let's at least get this out of the way.
She performed some tests similar to the ADOS and evaluation tests they do at Melmed. She also asked him to make several different sounds and simply monitored his play. She said that he is doing great and very age appropriate in his speech. She also said that he does not show spectrum-like tendencies. All of this was great news. She is still going to recommend speech therapy because the extra help couldn't hurt but she did say that he is ready for community preschool.
Overall, it was a fantastic day!
Friday, September 25, 2009
Maybe I should just say "it's been a great week!"
This week has been a great week and it was capped off by another great day on Thursday (9/24). I took Joey for his karate evaluation after school. He wasn't a fan of watching the class but I figured I would try him in a one on one scenario. It didn't work, but I give him a lot of credit for going in there, voicing his opinion and then agreeing to watch the class for a few minutes (hey, they had numchucks - who doesn't like that?).
After that, we headed to the "eating store" to pick up some groceries and then headed to his 1st T-ball practice. Joey was hesitant and automatically wondered where his Daddy was. His Daddy works in baseball and is a baseball fan so he introduced Joey to baseball at a young age (he showed him a baseball the night he was born). I assured him his Daddy would be coming. I purposely had him arrive a little late so that Joey would join the team instead of just wanting to play with Daddy on the slide. He went over to the team and sat in a circle with the other boys and 1 girl. He said his name when asked and told them his favorite food was Lunchables (the other kids mostly said cookies).
Then, they warmed up by doing stretches and jogging around the field. After that, they broke in to 3 teams and then rotated between them. First up was one on one catching. Then, they practiced catching in the outfield. After that, they took turns at bat. Unfortunately, by that time, it was getting dark so I wasn't able to get good video or pictures.
Overall, the practice was a success.
On Friday (9/25), we had our 2nd of 4 sessions with SARRC for Hab-M/ABA. It was tough because I showed a lot of tough love, holding strong to what I say and the consequences for Joey's actions. The most important thing I wanted to work on was playing catch. The 1st time, he didn't want to catch at all; he just wanted to hit the ball with his fist. The 2nd time we went out there, he did say that he couldn't catch the ball but he still tried. I wasn't sure if it was frustration from the day or because he really was having trouble. I don't want Joey to get frustrated so early on.
All in all, it was a great week. Many mini milestones were reached. I'm so proud of my Joey. We capped off the week with a 2nd showing of Cloudy with a Chance of Meatballs...this time in 3D!
After that, we headed to the "eating store" to pick up some groceries and then headed to his 1st T-ball practice. Joey was hesitant and automatically wondered where his Daddy was. His Daddy works in baseball and is a baseball fan so he introduced Joey to baseball at a young age (he showed him a baseball the night he was born). I assured him his Daddy would be coming. I purposely had him arrive a little late so that Joey would join the team instead of just wanting to play with Daddy on the slide. He went over to the team and sat in a circle with the other boys and 1 girl. He said his name when asked and told them his favorite food was Lunchables (the other kids mostly said cookies).
Then, they warmed up by doing stretches and jogging around the field. After that, they broke in to 3 teams and then rotated between them. First up was one on one catching. Then, they practiced catching in the outfield. After that, they took turns at bat. Unfortunately, by that time, it was getting dark so I wasn't able to get good video or pictures.
Overall, the practice was a success.
On Friday (9/25), we had our 2nd of 4 sessions with SARRC for Hab-M/ABA. It was tough because I showed a lot of tough love, holding strong to what I say and the consequences for Joey's actions. The most important thing I wanted to work on was playing catch. The 1st time, he didn't want to catch at all; he just wanted to hit the ball with his fist. The 2nd time we went out there, he did say that he couldn't catch the ball but he still tried. I wasn't sure if it was frustration from the day or because he really was having trouble. I don't want Joey to get frustrated so early on.
All in all, it was a great week. Many mini milestones were reached. I'm so proud of my Joey. We capped off the week with a 2nd showing of Cloudy with a Chance of Meatballs...this time in 3D!
What a great day!
Wednesday (9/23) was a milestone on many levels!
I picked Joey up from school instead of having him take the bus because I wanted to get an earlier start at the hairdresser's so we could get to Neema and Grandpa's faster. The teacher greeted me with some exciting news: both Ms. Martin and Jennie, the speech therapist, feel that Joey has far surpassed his peers cognitively and is ready for community preschool (I felt he was ready in August but being at a new school, they needed time to evaluate him). This is an amazing milestone! I got teary-eyed as we walked to the car. My little man has grown leaps and bounds in the last year. It reminds me that everything does happen for a reason and I'm glad I have been able to be home with him to get him the services he needs. Unfortunately, on this day, I got a call from a possible new employer and an email from an old employer so it was a wake up call that my being home may come to an end.
Then, we headed to Cool Cuts for Kids. Joey hates getting his haircut. As usual, I told the girl "no trimmer and no buzzer." He sat better than he ever did so she asked me if she could try the trimmer. Joey was scared but she showed him that it was harmless by letting him feel it. He giggled and said it tickled. He let her clean up his neck and even around his ears!!! What a huge step for Joey!!
We then headed to Target because I promised him a trip to the "red store" to get Pop the Pig. I reminded him we had to leave quickly and he didn't fight me to stay and look at every toy. This is definitley a first!
Later on, at my parents' house, Joey cut his wrist while building a Lego. He actually showed it to me and asked for ice and then a band aid. He usually just runs and hides. Of course, later after his bath, he wanted long pajamas on so that no one could see his "owie."
I picked Joey up from school instead of having him take the bus because I wanted to get an earlier start at the hairdresser's so we could get to Neema and Grandpa's faster. The teacher greeted me with some exciting news: both Ms. Martin and Jennie, the speech therapist, feel that Joey has far surpassed his peers cognitively and is ready for community preschool (I felt he was ready in August but being at a new school, they needed time to evaluate him). This is an amazing milestone! I got teary-eyed as we walked to the car. My little man has grown leaps and bounds in the last year. It reminds me that everything does happen for a reason and I'm glad I have been able to be home with him to get him the services he needs. Unfortunately, on this day, I got a call from a possible new employer and an email from an old employer so it was a wake up call that my being home may come to an end.
Then, we headed to Cool Cuts for Kids. Joey hates getting his haircut. As usual, I told the girl "no trimmer and no buzzer." He sat better than he ever did so she asked me if she could try the trimmer. Joey was scared but she showed him that it was harmless by letting him feel it. He giggled and said it tickled. He let her clean up his neck and even around his ears!!! What a huge step for Joey!!
We then headed to Target because I promised him a trip to the "red store" to get Pop the Pig. I reminded him we had to leave quickly and he didn't fight me to stay and look at every toy. This is definitley a first!
Later on, at my parents' house, Joey cut his wrist while building a Lego. He actually showed it to me and asked for ice and then a band aid. He usually just runs and hides. Of course, later after his bath, he wanted long pajamas on so that no one could see his "owie."
Tuesday, September 22, 2009
A day of firsts
Today was a day of firsts for Joey. He rode home on the bus for the first time this school year. He used to take the bus for 2 years, to and from preschool, returning to the onsite daycare at my job. He stopped in April of this year when I stopped working.
The teacher reminded him when I dropped him off that he would be taking the bus home. He was fine with it (or he was just ignoring his teacher). Either way, he loved it! Being the only one that doens't take the bus home, his teacher felt that it would help him fit in more with his peers and not feel left out. Of course, I couldn't find the video camera in time (the bus was early) but I did take lots of pictures!
After a little relaxation time, we headed to a marital arts academy for their Lil' Dragons class. He didn't like the yelling but sat and watched the class. We will try again.
The teacher reminded him when I dropped him off that he would be taking the bus home. He was fine with it (or he was just ignoring his teacher). Either way, he loved it! Being the only one that doens't take the bus home, his teacher felt that it would help him fit in more with his peers and not feel left out. Of course, I couldn't find the video camera in time (the bus was early) but I did take lots of pictures!
After a little relaxation time, we headed to a marital arts academy for their Lil' Dragons class. He didn't like the yelling but sat and watched the class. We will try again.
Monday, September 21, 2009
SARRC's Jump Start Program ~ Wrap-Up
Yikes! I've dropped the ball! With so much going on, I didn't continue my posts about the terrific Jump Start program at SARRC.
Sunday, September 20, 2009
Behavioral Therapy at SARRC
Last Friday, we started a new group of sessions of ABA at SARRC. I love that place. This is $50 per hour for 8 sessions. It is definitely worth the money. This would essentially take place of Hab-M (Habilitation with a Master's Degree) which he is not eligible for past the age of 3 (makes no sense)!
This is really a continuation of the Jump Start program that we did in July and August. We worked on turn taking, using words for communication and transitions. I look forward to our next session!
This is really a continuation of the Jump Start program that we did in July and August. We worked on turn taking, using words for communication and transitions. I look forward to our next session!
Daddy's Return
Joey's father returned on Friday night. I use the word "father" loosely as my ex really doesn't care about being one. It is now Sunday morning and I am already truly disgusted about how my ex has acted and it's effect on my son.
Ben walks in the door Friday night and Joey runs into his arms. His first words? "I love your face, Daddy." He is overjoyed that his father has returned home from being gone for 5 and a half months. Ben sleeps over and they enjoy the day together Saturday, which included a movie with me as well.
Come Saturday evening, Ben asks "how long do you need me here?" I guess after getting a taste of his girlfriend earlier, he can't wait to go back for more and "parenting" (I use that term loosely too) has taken a backseat. I told him that Joey hears and absorbs everything and that you should never say that in front of him. But this is coming from a man who told me earlier that it was my new husband's job to provide Joey with a good life.
I told Ben he was free to go anytime. He had already told me that he was staying at his girlfriend's house overnight because it would be easier to get to the stadium in the morning. How I asked, since I live 5 minutes from the stadium. He never answered...even after I asked that question a few times. I had told him earlier that he couldn't stay for the week until his apartment was ready. Not only had he never asked if he could stay with us, but I felt it would be bad for Joey, as he might get used to seeing Daddy everyday. Of course, Ben uses this as an easy way out and says "it's better for Joey if I leave tonight and stay at Shannon's." No, it's just better for your dick which is all you think about.
When my husband and I returned home from our date, I was very sick from the sushi so I didn't talk to Ben before he left. Joey was asleep. When Joey and I woke up this morning, he said "Mama, where's Daddy?" I told Joey that he's at work and it was at that point that Joey decided he would have nothing to do with me for the rest of the day.
I called Ben to tell him and he said "oh, that's because I told him he could come to work with me today." What!!?? I asked why I didn't know this and he said it was because I was too busy being sick last night so he couldn't tell me. Um...why couldn't he have texted me that?? I told him that maybe he should take Joey for the week and he said ok and then said "well...would I just drop him off in the morning? Wait...I have no place to stay." I told him to "get a hotel room and figure it out" and then I hung up.
I am truly disgusted. It didn't take Ben long to disappoint all of us. Sometimes I think he doesn't know better, especially when he truly acts like he might have Asperger's, but then I see through the facade. I can tell by the nasty looks he gives and the jokes he makes that he is well aware of the scumbag he really is.
Ben walks in the door Friday night and Joey runs into his arms. His first words? "I love your face, Daddy." He is overjoyed that his father has returned home from being gone for 5 and a half months. Ben sleeps over and they enjoy the day together Saturday, which included a movie with me as well.
Come Saturday evening, Ben asks "how long do you need me here?" I guess after getting a taste of his girlfriend earlier, he can't wait to go back for more and "parenting" (I use that term loosely too) has taken a backseat. I told him that Joey hears and absorbs everything and that you should never say that in front of him. But this is coming from a man who told me earlier that it was my new husband's job to provide Joey with a good life.
I told Ben he was free to go anytime. He had already told me that he was staying at his girlfriend's house overnight because it would be easier to get to the stadium in the morning. How I asked, since I live 5 minutes from the stadium. He never answered...even after I asked that question a few times. I had told him earlier that he couldn't stay for the week until his apartment was ready. Not only had he never asked if he could stay with us, but I felt it would be bad for Joey, as he might get used to seeing Daddy everyday. Of course, Ben uses this as an easy way out and says "it's better for Joey if I leave tonight and stay at Shannon's." No, it's just better for your dick which is all you think about.
When my husband and I returned home from our date, I was very sick from the sushi so I didn't talk to Ben before he left. Joey was asleep. When Joey and I woke up this morning, he said "Mama, where's Daddy?" I told Joey that he's at work and it was at that point that Joey decided he would have nothing to do with me for the rest of the day.
I called Ben to tell him and he said "oh, that's because I told him he could come to work with me today." What!!?? I asked why I didn't know this and he said it was because I was too busy being sick last night so he couldn't tell me. Um...why couldn't he have texted me that?? I told him that maybe he should take Joey for the week and he said ok and then said "well...would I just drop him off in the morning? Wait...I have no place to stay." I told him to "get a hotel room and figure it out" and then I hung up.
I am truly disgusted. It didn't take Ben long to disappoint all of us. Sometimes I think he doesn't know better, especially when he truly acts like he might have Asperger's, but then I see through the facade. I can tell by the nasty looks he gives and the jokes he makes that he is well aware of the scumbag he really is.
Thursday, September 17, 2009
MRI results today
If I said I wasn't nervous right now, I would be lying BIG TIME. Today could be life changing. I already have IBS and this ordeal has brought it to a whole other level.
Sonoran Living Segment
I did it! I was super nervous but I pulled it off! It was kind of exciting being behind the scenes of a TV show.
Here's the link to the segment:
http://www.abc15.com/content/living/familylife/story/5-problems-your-kids-could-face-as-they-head-back/-LrNCwlpvUuXX2Q8jSFjNg.cspx?p=2
My 6 minutes of fame are up. Now back to reality:)
I have to add that Joey was so cute! Bryan told me that he watched my segment live and waved and said "hi Mommy" and also blew a kiss to the TV screen. When I picked him up from my Dad's house, he said (on his own), "you didn't say hi to me on the TV. That's ok; you can do it again tomorrow." I love him!
Here's the link to the segment:
http://www.abc15.com/content/living/familylife/story/5-problems-your-kids-could-face-as-they-head-back/-LrNCwlpvUuXX2Q8jSFjNg.cspx?p=2
My 6 minutes of fame are up. Now back to reality:)
I have to add that Joey was so cute! Bryan told me that he watched my segment live and waved and said "hi Mommy" and also blew a kiss to the TV screen. When I picked him up from my Dad's house, he said (on his own), "you didn't say hi to me on the TV. That's ok; you can do it again tomorrow." I love him!
Tuesday, September 15, 2009
Sonoran Living TV Show
Yikes! I will be on Sonoran Living tomorrow morning, September 16th, from 9-10 am! I'm nervous! But it's a nice break from the stress of the week.
Here is the link to the outline of my segment! See you tomorrow!
http://www.abc15.com/content/living/familylife/story/5-problems-your-kids-could-face-as-they-head-back/-LrNCwlpvUuXX2Q8jSFjNg.cspx
Here is the link to the outline of my segment! See you tomorrow!
http://www.abc15.com/content/living/familylife/story/5-problems-your-kids-could-face-as-they-head-back/-LrNCwlpvUuXX2Q8jSFjNg.cspx
Belly explosion
9/9/09 ~ Wednesday ~ Day 7 of Operation Poop Out.
I brought Joey to my parents after school. He had a diaper on, waiting for the explosion, because he has yet to poop on the potty. I changed his diaper and ran to CVS to pick up his prescriptions. I called my parents after about 10 minutes of being gone to check on Joey and let them know that I was still waiting. They said he was ok and had not pooped. I returned to their home about 10-15 minutes later and my Dad answered the door. He told me Joey had an explosion and was in the tub. How did that happend while I was away for such a short time?
Before I had left for CVS, I had received a return call from Dr. Ursea's assistant. She told me that the doc wanted to admit Joey. I begged for another X-ray before we admitted him. He had had some big movements. It would have been such a traumatic experience for him, especially with him having to go to the hospital the following week. Plus, last time we had to do this, it took about a week for it to work. I needed more time. Apparently, so did Joey!
I brought Joey to my parents after school. He had a diaper on, waiting for the explosion, because he has yet to poop on the potty. I changed his diaper and ran to CVS to pick up his prescriptions. I called my parents after about 10 minutes of being gone to check on Joey and let them know that I was still waiting. They said he was ok and had not pooped. I returned to their home about 10-15 minutes later and my Dad answered the door. He told me Joey had an explosion and was in the tub. How did that happend while I was away for such a short time?
Before I had left for CVS, I had received a return call from Dr. Ursea's assistant. She told me that the doc wanted to admit Joey. I begged for another X-ray before we admitted him. He had had some big movements. It would have been such a traumatic experience for him, especially with him having to go to the hospital the following week. Plus, last time we had to do this, it took about a week for it to work. I needed more time. Apparently, so did Joey!
Saturday, September 12, 2009
Free Autism Workshop today in Scottsdale
Here is a 3 hr Saturday workshop in Scottsdale!
Autism Saturday Workshop S*CCEEDS registered, ADE approved
Saturday September 12th for Parents and Professionals Sponsored by Arizona Teacher’s Professional Development and the East Valley Aspergers Asc.
This 3 hour workshop will teach about the symptoms of and treatments for Autism/Aspergers/ PDD. It will cover physiological, psychological and developmental factors in Autistic behavior. Also covered will be some of the predispositions, causes and triggers of Autism.
$30 enrollment fee includes lunch and 3 hr CEU certificate (FREE to Parents)
Time: 11:00 a.m. – 2:00 p.m.
Saturday September 12th, 2009
Held at Buster’s restaurant, 8320 N Hayden Rd Scottsdale, AZ 85258480-941-5850 (North of Via De Ventura on Hayden)
To reserve seating call the Healing Pathways Medical Clinic 480-820-6695
Autism Saturday Workshop S*CCEEDS registered, ADE approved
Saturday September 12th for Parents and Professionals Sponsored by Arizona Teacher’s Professional Development and the East Valley Aspergers Asc.
This 3 hour workshop will teach about the symptoms of and treatments for Autism/Aspergers/ PDD. It will cover physiological, psychological and developmental factors in Autistic behavior. Also covered will be some of the predispositions, causes and triggers of Autism.
$30 enrollment fee includes lunch and 3 hr CEU certificate (FREE to Parents)
Time: 11:00 a.m. – 2:00 p.m.
Saturday September 12th, 2009
Held at Buster’s restaurant, 8320 N Hayden Rd Scottsdale, AZ 85258480-941-5850 (North of Via De Ventura on Hayden)
To reserve seating call the Healing Pathways Medical Clinic 480-820-6695
Saturday, September 5, 2009
Conflicted about Obama
Many Autism Moms don't like Obama because he wants to make vaccines mandatory. I haven't read enough about it to know what his stance is. My son has been and continues to be vaccinated. I agree with the Green Your Vaccine movement and urge parents to pay the extra money to separate the MMR. However, I must say that Obama is focused on the epidemic and is paying more attention to it than any other disorder or disease.
Here's the link from Autism News:
http://www.theautismnews.com/2009/09/05/autism-screening-tops-obamas-medical-to-do-list-2/
Autism screening tops Obama’s medical to-do list
September 5th, 2009
The Autism News English
By Nancy Shute U.S. News & World Report
Autism is the only disorder or disease mentioned explicitly in Obama’s 24-point agenda on Whitehouse.gov . Heart disease and cancer don’t get the call. Neither does diabetes, or other chronic diseases.
But there are four hefty bullet points addressing autism. Obama called for:
1. Increased funding for research, treatment, screenings, public awareness and support services for autism spectrum disorders.
2. “Life-long services” for people with autism spectrum disorders, as children and as adults. Many parents struggle to find and pay for screening and treatments for their children, but there is even less coverage and capacity for adults with autism-based impairments.
3. More funding for the 2006 Combating Autism Act, as well as improving state and federal autism programs.
4. Universal screening for all infants for autism disorders, as well as re-screening for all 2-year-olds. This is the biggie; children are currently screened only if parents or pediatricians voice a concern, so too many children aren’t diagnosed until they enter elementary school. The earlier treatment starts, the more effective it is, and a national screening program would help reduce the number of kids falling through the cracks. It would also be a huge undertaking, at a time when both government and privately insured health care is foundering.
That second bullet point would be a huge help for families who are struggling to provide care. In a recent survey, 52 percent of parents of children with autism said their family finances were drained by treatment and care, compared to 13 percent of typical families.
The 2006 Combating Autism act promised almost $1 billion over five years for autism research and development, but Congress hadn’t appropriated $200 million per year, even before the economy hit the skids. The Obama manifesto gives a big fat hint that for autism, at least, the hard times cited in the new president’s inaugural address won’t mean big cuts in funding.
Still, universal screening for autism will be a huge challenge. There’s no blood test that can be used to diagnose autism, as there is for hereditary diseases like galactosemia and sickle cell, which are screened for using a heel stick while a newborn is still in the hospital. With autism, parents and doctors instead need to observe a child and look for delays in language, social interactions, and gross motor skills.
The Centers for Disease Control and Prevention recommends that pediatricians screen children during well-baby visits at 9 months, 18 months, and 24 or 30 months. But many doctors don’t get around to doing those screens, and until very recently the recommended tests weren’t sensitive enough to pick up mild autism spectrum disorders. Early screening for autism is a terrific idea. Making it happen will be a tall order, even for the can-do Obama team.
Source: http://www.fox13now.com/lifestyle/health/sns-health-autism-obama,0,4022260.story
Please share this news with friends, family and also with your contact list on Twitter, Facebook and MySpace.
Here's the link from Autism News:
http://www.theautismnews.com/2009/09/05/autism-screening-tops-obamas-medical-to-do-list-2/
Autism screening tops Obama’s medical to-do list
September 5th, 2009
The Autism News English
By Nancy Shute U.S. News & World Report
Autism is the only disorder or disease mentioned explicitly in Obama’s 24-point agenda on Whitehouse.gov . Heart disease and cancer don’t get the call. Neither does diabetes, or other chronic diseases.
But there are four hefty bullet points addressing autism. Obama called for:
1. Increased funding for research, treatment, screenings, public awareness and support services for autism spectrum disorders.
2. “Life-long services” for people with autism spectrum disorders, as children and as adults. Many parents struggle to find and pay for screening and treatments for their children, but there is even less coverage and capacity for adults with autism-based impairments.
3. More funding for the 2006 Combating Autism Act, as well as improving state and federal autism programs.
4. Universal screening for all infants for autism disorders, as well as re-screening for all 2-year-olds. This is the biggie; children are currently screened only if parents or pediatricians voice a concern, so too many children aren’t diagnosed until they enter elementary school. The earlier treatment starts, the more effective it is, and a national screening program would help reduce the number of kids falling through the cracks. It would also be a huge undertaking, at a time when both government and privately insured health care is foundering.
That second bullet point would be a huge help for families who are struggling to provide care. In a recent survey, 52 percent of parents of children with autism said their family finances were drained by treatment and care, compared to 13 percent of typical families.
The 2006 Combating Autism act promised almost $1 billion over five years for autism research and development, but Congress hadn’t appropriated $200 million per year, even before the economy hit the skids. The Obama manifesto gives a big fat hint that for autism, at least, the hard times cited in the new president’s inaugural address won’t mean big cuts in funding.
Still, universal screening for autism will be a huge challenge. There’s no blood test that can be used to diagnose autism, as there is for hereditary diseases like galactosemia and sickle cell, which are screened for using a heel stick while a newborn is still in the hospital. With autism, parents and doctors instead need to observe a child and look for delays in language, social interactions, and gross motor skills.
The Centers for Disease Control and Prevention recommends that pediatricians screen children during well-baby visits at 9 months, 18 months, and 24 or 30 months. But many doctors don’t get around to doing those screens, and until very recently the recommended tests weren’t sensitive enough to pick up mild autism spectrum disorders. Early screening for autism is a terrific idea. Making it happen will be a tall order, even for the can-do Obama team.
Source: http://www.fox13now.com/lifestyle/health/sns-health-autism-obama,0,4022260.story
Please share this news with friends, family and also with your contact list on Twitter, Facebook and MySpace.
Wednesday, September 2, 2009
His poor little belly
I took Joey to see Dr. Ursea at Phoenix Children's Hospital this past Monday. I soon found out there is a reason it is so hard to see her: she is the best! I have heard about through the Autism community and I have been told by other doctors that she is the best pediatric gastroenterologist in the Valley. She was so worth the wait!
Dr. Ursea was very thorough and asked a lot of questions. Her demeanor was wonderful with Joey. She knew he was scared and understood that he has sensory issues. She even skipped the rectal exam because she didn't want to put him through more discomfort and stress.
She told me that he probably didn't have allergies but it's best to test for them anyway so we will have bloodwork done. She also advised me that she will have a feeding specialist perform an evaluation and also have a nutritionist call me to discuss any concerns with his diet. She ordered an X-Ray and we had it done there right away. The tech was so good with Joey and helped to comfort him. She even showed him pictures of his insides on the computer screen. He loved it!
I was told to call back two days later so that is exactly what I did today. They were so quick to return my call. The nurse even said that she couldn't get in with Dr. Ursea to discuss the results but wanted to call me right away. Joey's colon is dialated into his abdomen. The course of action is 2 capfuls of Miralax in 16oz of clear liquid twice a day until we get chicken broth-like consistency. We need to get this working within days or they will admit him by Monday (Labor Day) and put a tube down his throat! Hasn't this poor little man been through enough.
We are starting Operation Poop Out tomorrow morning!
Dr. Ursea was very thorough and asked a lot of questions. Her demeanor was wonderful with Joey. She knew he was scared and understood that he has sensory issues. She even skipped the rectal exam because she didn't want to put him through more discomfort and stress.
She told me that he probably didn't have allergies but it's best to test for them anyway so we will have bloodwork done. She also advised me that she will have a feeding specialist perform an evaluation and also have a nutritionist call me to discuss any concerns with his diet. She ordered an X-Ray and we had it done there right away. The tech was so good with Joey and helped to comfort him. She even showed him pictures of his insides on the computer screen. He loved it!
I was told to call back two days later so that is exactly what I did today. They were so quick to return my call. The nurse even said that she couldn't get in with Dr. Ursea to discuss the results but wanted to call me right away. Joey's colon is dialated into his abdomen. The course of action is 2 capfuls of Miralax in 16oz of clear liquid twice a day until we get chicken broth-like consistency. We need to get this working within days or they will admit him by Monday (Labor Day) and put a tube down his throat! Hasn't this poor little man been through enough.
We are starting Operation Poop Out tomorrow morning!
Walking for Autism
Hello! It is that time of year again! Joey D's Crew is doing 2 walks this year: the Zoo Walk for Autism Research and Walk Now for Autism Speaks.
The Zoo Walk raises money for the Autism Research Institute (http://www.autism.com). Last year, we raised $1225 dollars, exceeding our goal of $1000. Our goal this year is $1000.
The link to donate is: https://www.ariautism.com/zoowalk/phoenix/donations.html
Don't forget to click on Joey D's Crew and don't forget to print out your receipt for your taxes after you're done!
This is our 1st time doing the Walk Now for Autism Speaks. This is a great organization that was started in 2005 and has helped to bring resources and awareness to parents across the country (www.autismspeaks.org). Our goal is $300.
The link to donate is: http://www.walknowforautism.org/az/joeydscrew
This will bring you to our homepage:)
Thank you so much for helping out Joey D's Crew. Even $5 will make a difference.
Sincerely,
Michelle & Joey
The Zoo Walk raises money for the Autism Research Institute (http://www.autism.com). Last year, we raised $1225 dollars, exceeding our goal of $1000. Our goal this year is $1000.
The link to donate is: https://www.ariautism.com/zoowalk/phoenix/donations.html
Don't forget to click on Joey D's Crew and don't forget to print out your receipt for your taxes after you're done!
This is our 1st time doing the Walk Now for Autism Speaks. This is a great organization that was started in 2005 and has helped to bring resources and awareness to parents across the country (www.autismspeaks.org). Our goal is $300.
The link to donate is: http://www.walknowforautism.org/az/joeydscrew
This will bring you to our homepage:)
Thank you so much for helping out Joey D's Crew. Even $5 will make a difference.
Sincerely,
Michelle & Joey
Monday, August 31, 2009
Car emergency cards for Autistic kids: Paramedic approved!
Great article from The Autism News today. Here's the link:
http://www.theautismnews.com/2009/08/31/car-emergency-cards-for-autistic-kids-paramedic-approved/
I know I fear this. I really need to attach something somewhere that could tell a paramedic that my son has ASD and Epilepsy.
http://www.theautismnews.com/2009/08/31/car-emergency-cards-for-autistic-kids-paramedic-approved/
I know I fear this. I really need to attach something somewhere that could tell a paramedic that my son has ASD and Epilepsy.
Sunday, August 30, 2009
A Dose of Controversy ~ Dateline Exclusive
A complex disorder? You got that right. This show proved to me that the theory that the MMR vaccine causes Autism is bull. I truly believe that Autism is a group of disorders which probably have a group of causes.
The movie "Hear the Silence" is about the doc who first said the MMR causes vaccines. I might check it out.
At least they ended the show on a positive note..."everything the future holds is good."
The movie "Hear the Silence" is about the doc who first said the MMR causes vaccines. I might check it out.
At least they ended the show on a positive note..."everything the future holds is good."
Saturday, August 29, 2009
Upcoming Autism Society of America Events
Pump It Up 4th Anniversary Celebration!
Monday August 31st - 5:00-8:00 PM - FREE!
For the occasion, the North Phoenix Pump It Up location is having an open house with free play time for all visitors for an hour. The event will last 3 hours, from 5-8 pm, and visitors will go into the arenas every 30 minutes. Pump It Up is inviting visitors to make voluntary donations to the Autism Society while the event itself is free.
22515 N 18th Drive
Phoenix, AZ 85027-1356
(623) 434-7867
Don't miss the next Sensory Friendly Film!
Cloudy with a Chance of Meatballs
September 19, 2009 - 10 a.m.
AMC Entertainment (AMC) and the Autism Society have teamed up to bring families affected by autism and other disabilities a special opportunity to enjoy their favorite films in a safe and accepting environment on a monthly basis with the "Sensory Friendly Films" program.
Monday August 31st - 5:00-8:00 PM - FREE!
For the occasion, the North Phoenix Pump It Up location is having an open house with free play time for all visitors for an hour. The event will last 3 hours, from 5-8 pm, and visitors will go into the arenas every 30 minutes. Pump It Up is inviting visitors to make voluntary donations to the Autism Society while the event itself is free.
22515 N 18th Drive
Phoenix, AZ 85027-1356
(623) 434-7867
Don't miss the next Sensory Friendly Film!
Cloudy with a Chance of Meatballs
September 19, 2009 - 10 a.m.
AMC Entertainment (AMC) and the Autism Society have teamed up to bring families affected by autism and other disabilities a special opportunity to enjoy their favorite films in a safe and accepting environment on a monthly basis with the "Sensory Friendly Films" program.
Friday, August 28, 2009
Life is so precious
Sometimes we forget just how precious life it...until God makes you have a wake up call.
My dear friend, Jessica, who has a son with Asperger's Syndrome and who is a great support for me when I need it most could have died last Sunday. She was riding in the backseat of a car when the driver lost control and the car flipped over several times. She was ejected from the car.
When I went to the hospital Monday, nothing could have prepared me for what I was about to see. No one should ever have to see a loved one in that condition. Her husband, my wonderful friend Aquino, showed me pictures to prepare me. I sat in the waiting room and cried. As I walked down the hallway to her room, the tears fell harder. As I entered her room, I could barely see. It's a good thing because the sight of her in the bed was so bad.
Fractured occipital bone, 3 broken ribs, fractured vertebrae, fractured sternum, severed bottom lip and tongue, her entire body swollen 10x the size it should be, her face badly bruised. She laid there, eyes swollen shut, barely conscious...she looked like she was not alive. She had a breathing tube in and a tube to remove the stuff from her lungs. It was bloody and gross.
I kissed her forehead and I left, not knowing if she was going to get better or not. Seeing my friend Aquino in such a fragile state was heartbreaking. He just wanted his wife to be ok and to come back to him.
I could barely sleep that night. I kept picturing her in the bed, not moving. Every time I closed my eyes, that's all I could see.
By Thursday, the breathing tube was out and a feeding tube was in. She got up and walked to the bathroom! Miracles do happen. She came back to us. I went to see her that day and she looked so much better than she did Monday. Her eyes were partly opened and she could muster out a few words. I went back in today, Friday, and she was doing even better. She said that she may get out of ICU in the next few days! I told her how bad it was on Monday and she said that other people said the same thing. I'm just so amazed at how well she is doing.
Since Monday though, I am terrified to be in the car. Every time I look in the rearview mirror, I think that a car coming up behind me could kill me. It's nerve-wracking but it's ok. Maybe we all needed a wake-up call.
My dear friend, Jessica, who has a son with Asperger's Syndrome and who is a great support for me when I need it most could have died last Sunday. She was riding in the backseat of a car when the driver lost control and the car flipped over several times. She was ejected from the car.
When I went to the hospital Monday, nothing could have prepared me for what I was about to see. No one should ever have to see a loved one in that condition. Her husband, my wonderful friend Aquino, showed me pictures to prepare me. I sat in the waiting room and cried. As I walked down the hallway to her room, the tears fell harder. As I entered her room, I could barely see. It's a good thing because the sight of her in the bed was so bad.
Fractured occipital bone, 3 broken ribs, fractured vertebrae, fractured sternum, severed bottom lip and tongue, her entire body swollen 10x the size it should be, her face badly bruised. She laid there, eyes swollen shut, barely conscious...she looked like she was not alive. She had a breathing tube in and a tube to remove the stuff from her lungs. It was bloody and gross.
I kissed her forehead and I left, not knowing if she was going to get better or not. Seeing my friend Aquino in such a fragile state was heartbreaking. He just wanted his wife to be ok and to come back to him.
I could barely sleep that night. I kept picturing her in the bed, not moving. Every time I closed my eyes, that's all I could see.
By Thursday, the breathing tube was out and a feeding tube was in. She got up and walked to the bathroom! Miracles do happen. She came back to us. I went to see her that day and she looked so much better than she did Monday. Her eyes were partly opened and she could muster out a few words. I went back in today, Friday, and she was doing even better. She said that she may get out of ICU in the next few days! I told her how bad it was on Monday and she said that other people said the same thing. I'm just so amazed at how well she is doing.
Since Monday though, I am terrified to be in the car. Every time I look in the rearview mirror, I think that a car coming up behind me could kill me. It's nerve-wracking but it's ok. Maybe we all needed a wake-up call.
Wednesday, August 26, 2009
No Ribbon for Alexa ~ Story from Autism Speaks
Great story from Autism Speaks website.
"In a household where one of your children has autism, how do you acknowledge the unique qualities and wonderful contributions of your neurotypical child?"
Here's the link:
http://www.autismspeaks.org/community/ownwords/intheirownwords_ribbon.php
"In a household where one of your children has autism, how do you acknowledge the unique qualities and wonderful contributions of your neurotypical child?"
Here's the link:
http://www.autismspeaks.org/community/ownwords/intheirownwords_ribbon.php
Monday, August 24, 2009
The Leaky Gut
I looked for info for my Dad today because I couldn't quite explain to him what I'm concerned about when it comes to Joey's stomach. We have an appointment with the best gastro doc in the Valley for treating Autism kids next Monday. I will keep this blog updated as to how it goes. Too often, kids on the Autism Spectrum have gut issues and it's more than just taking something out of their diet. Their little bodies don't process food the same way.
http://www.femail.com.au/autism-leaky-gut-syndrom.htm
This site had a lot of info to explain the leaky gut and the link to Autism.
http://www.femail.com.au/autism-leaky-gut-syndrom.htm
This site had a lot of info to explain the leaky gut and the link to Autism.
Two articles from The Autism News
First article is about vision screening for Autistic children.
http://www.theautismnews.com/2009/08/24/pediavision-sheds-new-light-on-vision-screening-for-autistic-children/
I love this quote from the article: "Often children with autism have to be sedated in order to go into a doctor’s office to have an eye exam — they don’t like being touched and they don’t like having their personal space invaded,' said Debbie McKinney, mother of Christopher, age 5, who is autistic."
I wish every doctor and dentist understood this!!!!!
Second article is epilepsy and it's link to brain development and Autism. Joey's seizures come from the parietal lobe but they are still complex partial seizures so the article has some helpful information to me (the article focuses on the temporal lobe).
http://www.theautismnews.com/2009/08/24/epilepsy-linked-to-disruption-of-brain-development/
Important quote from the article: “These partial seizures can have a significant impact on a patient’s quality of life. Because patients can be disoriented and excessively tired following a seizure event, their day-to-day lives can sometimes be seriously disrupted. And when it comes to driving and other activities, there is still a real danger associated with this condition,' notes Anderson."
http://www.theautismnews.com/2009/08/24/pediavision-sheds-new-light-on-vision-screening-for-autistic-children/
I love this quote from the article: "Often children with autism have to be sedated in order to go into a doctor’s office to have an eye exam — they don’t like being touched and they don’t like having their personal space invaded,' said Debbie McKinney, mother of Christopher, age 5, who is autistic."
I wish every doctor and dentist understood this!!!!!
Second article is epilepsy and it's link to brain development and Autism. Joey's seizures come from the parietal lobe but they are still complex partial seizures so the article has some helpful information to me (the article focuses on the temporal lobe).
http://www.theautismnews.com/2009/08/24/epilepsy-linked-to-disruption-of-brain-development/
Important quote from the article: “These partial seizures can have a significant impact on a patient’s quality of life. Because patients can be disoriented and excessively tired following a seizure event, their day-to-day lives can sometimes be seriously disrupted. And when it comes to driving and other activities, there is still a real danger associated with this condition,' notes Anderson."
Kudos to Massachusetts General Hospital
Massachusetts General Hospital has created a medical care program targeting adults with Autism. Read the article at http://www.boston.com/news/health/articles/2009/08/23/mgh_to_target_adult_autism/
I received this information from Autism Speaks.
I received this information from Autism Speaks.
Saturday, August 22, 2009
The Severity of Autism is Directly Linked to Heavy Metals in the Body
Zoo Walk Press Release yesterday: The severity of Autism in directly linked to heavy metals in the body. This study was funded by the Zoo Walk for Autism.
Read the full study here: http://www.scnm.edu/images/stories/Publications/Autism-Research.pdf
Read the full study here: http://www.scnm.edu/images/stories/Publications/Autism-Research.pdf
OT Evaluation
October 15, 2008 I wrote a blog post about OT. I wrote about it because Joey's behavioral pediatrician suggested he get some occupational therapy since kids with Autism Spectrum Disorder improve greatly with it. Shortly after that, I had my son's annual IEP meeting in which they told me that he didn't qualify for individual OT and that what he received in a group setting would be sufficient. They were wrong.
I had told Joey's DDD support coordinator that I thought he needed some OT. On the day he got approved for services, I received my weekly email from Horizon Pediatric Therapy, where Joey used to receive speech therapy. They just happen to have a weekly OT appointment slot open up. I jumped on it!
The therapist said that Joey has issues crossing midline and he needs to practice switching his body weight from one foot to the other and touching opposite feet with opposite hands. He also has issues with vestibular movement and proprioceptive system. When I figure out what this all means, I'll write more!
He was uneasy being on a swing and it dawned on me then that he never really goes on swings at a playground. She also mentioned that if he is having issues with sitting on the potty, which he is, it could be because he doesn't have upper body coordination and strength. She suggested using pillows between him and the toilet or installing bars next to the toilet. After his gastro appointment, I will probably try this. She also mentioned a lot of tips inside the Out of Sync Child book, which I have but have not made it all the way through.
To be continued...
Check out the below link for a picture of Joey from his group speech therapy during the summer of 2008.
http://www.horizonaz.com/parents.php
I had told Joey's DDD support coordinator that I thought he needed some OT. On the day he got approved for services, I received my weekly email from Horizon Pediatric Therapy, where Joey used to receive speech therapy. They just happen to have a weekly OT appointment slot open up. I jumped on it!
The therapist said that Joey has issues crossing midline and he needs to practice switching his body weight from one foot to the other and touching opposite feet with opposite hands. He also has issues with vestibular movement and proprioceptive system. When I figure out what this all means, I'll write more!
He was uneasy being on a swing and it dawned on me then that he never really goes on swings at a playground. She also mentioned that if he is having issues with sitting on the potty, which he is, it could be because he doesn't have upper body coordination and strength. She suggested using pillows between him and the toilet or installing bars next to the toilet. After his gastro appointment, I will probably try this. She also mentioned a lot of tips inside the Out of Sync Child book, which I have but have not made it all the way through.
To be continued...
Check out the below link for a picture of Joey from his group speech therapy during the summer of 2008.
http://www.horizonaz.com/parents.php
"I want to get a cookie at Daddy's house"
As I stated in the previous post, Joey and I went swimming at my friend Anna's pool last Sunday. She lives in the apartment complex next to my ex's apartment complex. After we got out of the pool, Joey said he wanted to go get a cookie at Daddy's house. I didn't really think anything of it...I thought it was kind of random. When I mentioned it to my ex a few days later, he laughed and said that was how he would get Joey out of the pool at his apartment complex. He would promise him a cookie and then they would walk into the clubhouse and Joey would pick up 3 or 4. This became their ritual: Daddy figured it was a surefire way to get him out of the pool and Joey just expected a cookie after he was done with swimming. I often smile at some of the cute rituals Joey has.
I am just so amazed lately at what he is remembering and that he is able to remember at all. On Tuesday, we were looking at pool toys and rafts at Target when Joey turned to me and said "remember the pool with the slide." Holy crap! He remembers an inflatable pool that we had up for 3 days last summer at our old house. I can't believe that would be important enough for him to remember. I have noticed a lot lately that he has really been thinking out his answers and surprising me with what he says. I just love my little munchkin!
Today, Joey and I were filling out a Dr. Seuss book all about him. When it came to the page that asks what kind of climate we live in, he put his finger to his head to think, pointed to the house with snow on it and said, "that's Grandpa's house." The last 2 times that Joey went to visit my ex-in-laws, they had snow on the Oregon coast. They never get snow! Anyway, he went on to say "Daddy goes there to see Grandpa and Grandma. They're my other Grandpa and Grandma." I couldn't believe it. He wouldn't say that kind of thing on his own but seeing a picture prompted a memory.
I need to make up some books of Joey of his family members so that he can keep those memories alive. I think it's important for our kids with Autism to have reminders. I know social stories help him so I think some little photo albums of special trips and special people will be good for him. I made him a photo album of pictures of each of his Lego sets. Did it take a lot of time? Yes! Do people make snide remarks that I have too much time on my hands? Absolutely! But he loves that book and will tell me stories about each picture and each set. Prompting all that conversation is Priceless!!!
I am just so amazed lately at what he is remembering and that he is able to remember at all. On Tuesday, we were looking at pool toys and rafts at Target when Joey turned to me and said "remember the pool with the slide." Holy crap! He remembers an inflatable pool that we had up for 3 days last summer at our old house. I can't believe that would be important enough for him to remember. I have noticed a lot lately that he has really been thinking out his answers and surprising me with what he says. I just love my little munchkin!
Today, Joey and I were filling out a Dr. Seuss book all about him. When it came to the page that asks what kind of climate we live in, he put his finger to his head to think, pointed to the house with snow on it and said, "that's Grandpa's house." The last 2 times that Joey went to visit my ex-in-laws, they had snow on the Oregon coast. They never get snow! Anyway, he went on to say "Daddy goes there to see Grandpa and Grandma. They're my other Grandpa and Grandma." I couldn't believe it. He wouldn't say that kind of thing on his own but seeing a picture prompted a memory.
I need to make up some books of Joey of his family members so that he can keep those memories alive. I think it's important for our kids with Autism to have reminders. I know social stories help him so I think some little photo albums of special trips and special people will be good for him. I made him a photo album of pictures of each of his Lego sets. Did it take a lot of time? Yes! Do people make snide remarks that I have too much time on my hands? Absolutely! But he loves that book and will tell me stories about each picture and each set. Prompting all that conversation is Priceless!!!
Monday, August 17, 2009
Progress
I know in my heart that Joey has made so much progress in the past year but it really has hit me in the last few days. I spoke to my cousin Dawn, a school teacher, the other night, and she said that she had seen so much progress from her visit last August to her visit this past May to even now, hearing him on the phone. That makes me feel so good. Today, I spend the day with my friend Anna who I have known for 6 years so she has known Joey since he was born. She also has a son who is almost 9. She commented today how much he has improved. When I think back to last October, when Anna and Shiloh came to visit, Joey barely acknowledged him. Today, he was running around with Shiloh and making eye contact and interacting with him...trying to get his attention and calling his name. Wow...what a difference.
It makes me feel so good to know that I am pulling Joey through the window. There is still a long road ahead of us, but maybe it's a little shorter now. I'm so thankful to have Bryan by my side to get me through this, to pick me up when I fall and to remind me that what Joey and I are doing is making a difference, even on the toughest days when it seems we are having a setback.
It makes me feel so good to know that I am pulling Joey through the window. There is still a long road ahead of us, but maybe it's a little shorter now. I'm so thankful to have Bryan by my side to get me through this, to pick me up when I fall and to remind me that what Joey and I are doing is making a difference, even on the toughest days when it seems we are having a setback.
Sunday, August 16, 2009
Phone call with Daddy
Joey generally doesn't like talking on the phone so it's tough that his Dad has been away since April. They both miss each other but Joey just never wants to get on the phone. Well, on Friday night, he did! Unfortunately, the reception was bad but Joey said "I miss you Daddy" after his Dad said I love you. It wasn't him just repeating after his Dad. He said it on his own!!!
He also told his Dad, "you just have to get in your car and drive...drive to the heavy house." It was just so cute...and so heartbreaking. He never talks about missing his Daddy but I know he does. His Dad will be back after his week vacation at the beginning of September. I don't have a date yet but I'm used to not getting exact information. I'm just surprised he's not rushing here for Joey's MRI. Wait...I'm not surprised.
The only thing I'm worried about is Joey getting his Dad's undivided attention once he comes back. When he visited for 3 days in July, we let him stay at our house. I told him that he could have his girlfriend over as long as we knew ahead of time. The 1st night he was here, he snuck her in and had sex with her while our son was downstairs (Bryan and I actually got to go out for once!). Doesn't really show me how much Joey means to him. Yes, we all have needs but seriously? His girlfriend was apologetic to me for coming into my house without me knowing but my ex did not apologize. What they don't realize is the thing about Autism is kids with it can't lie.
My ex has a way of fooling everyone into thinking he cares...he even fools me. I'm sure he cares in his own way but I wish it was more for Joey's sake. I know the two of them will dictate what kind of relationship they have when Joey gets older. I just wish he took part in his life now. Who leaves their special needs child for 6 months (and for less than half his salary)? Someone who is defined by what he does, not by who he loves and who loves him.
Everyone likes to think I'm the bitter ex. I'm not. My life and Joey's life is 100 times better. And I am glad that my ex and I get along. I just wish he could be a better Dad and just care about Joey more. He doesn't even take Joey for a haircut when he's here. He's never once gone to an appointment that concerns Joey's Autism. So sad. I know most men are in denial but I guess I just expected more from a person in the health field that went to graduate school.
Enough about my rant, even though it is important for other women to know out there that it is not just YOU! Most Dads bail on their kids, especially when there is something wrong. What gets me is when those Dads are still considered Dad of the Year by the people around them. Wake up!
He also told his Dad, "you just have to get in your car and drive...drive to the heavy house." It was just so cute...and so heartbreaking. He never talks about missing his Daddy but I know he does. His Dad will be back after his week vacation at the beginning of September. I don't have a date yet but I'm used to not getting exact information. I'm just surprised he's not rushing here for Joey's MRI. Wait...I'm not surprised.
The only thing I'm worried about is Joey getting his Dad's undivided attention once he comes back. When he visited for 3 days in July, we let him stay at our house. I told him that he could have his girlfriend over as long as we knew ahead of time. The 1st night he was here, he snuck her in and had sex with her while our son was downstairs (Bryan and I actually got to go out for once!). Doesn't really show me how much Joey means to him. Yes, we all have needs but seriously? His girlfriend was apologetic to me for coming into my house without me knowing but my ex did not apologize. What they don't realize is the thing about Autism is kids with it can't lie.
My ex has a way of fooling everyone into thinking he cares...he even fools me. I'm sure he cares in his own way but I wish it was more for Joey's sake. I know the two of them will dictate what kind of relationship they have when Joey gets older. I just wish he took part in his life now. Who leaves their special needs child for 6 months (and for less than half his salary)? Someone who is defined by what he does, not by who he loves and who loves him.
Everyone likes to think I'm the bitter ex. I'm not. My life and Joey's life is 100 times better. And I am glad that my ex and I get along. I just wish he could be a better Dad and just care about Joey more. He doesn't even take Joey for a haircut when he's here. He's never once gone to an appointment that concerns Joey's Autism. So sad. I know most men are in denial but I guess I just expected more from a person in the health field that went to graduate school.
Enough about my rant, even though it is important for other women to know out there that it is not just YOU! Most Dads bail on their kids, especially when there is something wrong. What gets me is when those Dads are still considered Dad of the Year by the people around them. Wake up!
Tuesday, August 11, 2009
We've been approved!
I just got the phone call that Joey has been approved for state services. This will open the door to more therapy and intervention opportunities. It is up to me to get him all the help I possibly can so that he can be the best little Joe he can be.
Monday, August 10, 2009
Epilepsy Awareness at Chase Field
Brought to you by the Epilepsy Foundation of AZ.
Epilepsy Awareness at Chase FieldPhoenix, AZ 6:45 p.m. - 10:45 p.m.Tuesday, September 8, 2009
Arizona Diamondbacks vs. Los Angeles Dodgers
Tuesday, September 8, 2009Chase FieldGame starts at 6:40 PM
Half Price Tickets available in select seat locations:
$30.00 (reg. $50) – Lower Level Infield Box, Section 115$15.00 (reg. $30) – Lower Level Baseline Reserve, Section 134$7.50 (reg. $15) – Lower Level Bleachers, Section 140A portion of each ticket sold is donated to the Epilepsy Foundation of Arizona.
To purchase half price tickets visit:
www.dbacks.com/groups
Sign In: epilepsyPassword: awareness
Click Here to download the flyer. Questions? Contact Elena Stone at the D-backs, (602) 462-4121.
Epilepsy Awareness at Chase FieldPhoenix, AZ 6:45 p.m. - 10:45 p.m.Tuesday, September 8, 2009
Arizona Diamondbacks vs. Los Angeles Dodgers
Tuesday, September 8, 2009Chase FieldGame starts at 6:40 PM
Half Price Tickets available in select seat locations:
$30.00 (reg. $50) – Lower Level Infield Box, Section 115$15.00 (reg. $30) – Lower Level Baseline Reserve, Section 134$7.50 (reg. $15) – Lower Level Bleachers, Section 140A portion of each ticket sold is donated to the Epilepsy Foundation of Arizona.
To purchase half price tickets visit:
www.dbacks.com/groups
Sign In: epilepsyPassword: awareness
Click Here to download the flyer. Questions? Contact Elena Stone at the D-backs, (602) 462-4121.
Saturday, August 8, 2009
Sweet Peas Child Care
I decided to do something a little different. I am in the process of becoming a certified caregiver through the state of AZ. I will basically be a respite worker providing state paid-for babysitting...the very service that I don't get! Anyway, I've decided to offer my services to my neighbors, as well as offer event childcare, which is what I had at my wedding.
I'm calling it Sweet Peas Child Care and I hope I can pick up some extra $ while learning more about caring for kids with special needs and providing more socialization opportunities for Joey.
I'm calling it Sweet Peas Child Care and I hope I can pick up some extra $ while learning more about caring for kids with special needs and providing more socialization opportunities for Joey.
Night at the museum
We ventured to the Phoenix Children's Museum last night. Other than waiting outside in the heat for an hour to get in, we all had a good time. What was great about going there was it marked the very 1st time that Joey ever wanted to do a craft with me. We decorated a bottle cap and he put it on a string for me. I will treasure it always.
Joey continues to improve in socialization and his desire to want to socialize in groups. I am so proud of him!
Joey continues to improve in socialization and his desire to want to socialize in groups. I am so proud of him!
Thursday, August 6, 2009
Accessing state services
My journey into DDD, ALTCS and the state system hasn't been as long as some people but it sure is tedious.
DDD
I applied for DDD back in May. DDD stands for Department of Developmental Disabilites. They are essentially the support coordinators for all state services. You must get approved through them before ALTCS will call you.
I met with Che, a DDD representative June 16th at their office downtown. He approved Joey as an at-risk for Autism candidate (being on the Spectrum doesn't count, but they really don't need a diagnosis of Autism until they're 6). Then, Derek got a hold of me and came out to the house July 16th. He will be Joey's support coordinator. He was here for 2.5 hours and asked a lot of questions. He observed Joey in his "natural habitat" which was a little stressful. Having a stranger just stare at your son was unnerving to both me & Joey.
He said I would be receiving a large packet from him, which I did two weeks later.
ALTCS
ALTCS stands for Arizona Long Term Care. They get their funding from the federal government and coordinate with DDD to get kids services. With ALTCS, you get approved for AHCCCS, which is the state medical plan. You can use it as primary or secondary coverage.
The medical assistant from ALTCS came to the house on July 30th. She asked a lot of questions and observed Joey. Since then, we've been waiting for her answer but now that Joey has been diagnosed with Epilepsy, he should automatically be approved. If people don't get approved for ALTCS, then they automatically don't get services.
TO BE CONTINUED...
DDD
I applied for DDD back in May. DDD stands for Department of Developmental Disabilites. They are essentially the support coordinators for all state services. You must get approved through them before ALTCS will call you.
I met with Che, a DDD representative June 16th at their office downtown. He approved Joey as an at-risk for Autism candidate (being on the Spectrum doesn't count, but they really don't need a diagnosis of Autism until they're 6). Then, Derek got a hold of me and came out to the house July 16th. He will be Joey's support coordinator. He was here for 2.5 hours and asked a lot of questions. He observed Joey in his "natural habitat" which was a little stressful. Having a stranger just stare at your son was unnerving to both me & Joey.
He said I would be receiving a large packet from him, which I did two weeks later.
ALTCS
ALTCS stands for Arizona Long Term Care. They get their funding from the federal government and coordinate with DDD to get kids services. With ALTCS, you get approved for AHCCCS, which is the state medical plan. You can use it as primary or secondary coverage.
The medical assistant from ALTCS came to the house on July 30th. She asked a lot of questions and observed Joey. Since then, we've been waiting for her answer but now that Joey has been diagnosed with Epilepsy, he should automatically be approved. If people don't get approved for ALTCS, then they automatically don't get services.
TO BE CONTINUED...
Wednesday, August 5, 2009
Associated Content Writer
That's me! Just had my 2nd article posted today. Here's the link (Sanity Saving Exersaucer) :
http://www.associatedcontent.com/article/1950482/the_sanity_saving_exersaucer.html?cat=7
1st article link here (Dating After Divorce) :
http://www.associatedcontent.com/article/1992032/dating_after_divorce.html?cat=41
http://www.associatedcontent.com/article/1950482/the_sanity_saving_exersaucer.html?cat=7
1st article link here (Dating After Divorce) :
http://www.associatedcontent.com/article/1992032/dating_after_divorce.html?cat=41
A mighty heart
We originally had Joey's appointment with a pediatric cardiologist scheduled for next week but they had a cancellation last minute and we took it! Bright and early yesterday (8/4), we took a ride to Scottsdale to see Dr. Marcus. His office is right across the street from Joey's neurologist.
The doc did the typical stuff: asked why we were here and then asked a bunch of medical questions. Then, they surprised me by doing both the EKG and Echocardiogram right away. The Echo was 1st. Joey was already shaking when he got into the office and by then, he was terrified. They made some notes and pointed to the screen a few times. The 6 lead EKG was next. They only did 6 and not the requested 12 from the hospital because the doc and his assistant felt they could get the same information with 6 and 12 would be uncomfortable for Joey. By this time, I was on the verge of tears. Especially when saying things like "I don't want to stay still" and "I don't want Bryan to hold me." Bryan wasn't there but I think he was thinking back to the EEG, another scary experience.
The doc left the room while the assistant cleaned up. Once again, like in the EEG, Joey didn't want to pull the sticky things off his chest. The doctor came in and gave me the greatest news I had heard in a long time: Joey's heart was perfect!!
I should have known when Joey asked me in the car today "where are we going" that he was scared we were going to another doctor's appointment. I'm glad we weren't and hope that it will be a week or two before we have to go to another one. Next up, the MRI for his brain.
The doc did the typical stuff: asked why we were here and then asked a bunch of medical questions. Then, they surprised me by doing both the EKG and Echocardiogram right away. The Echo was 1st. Joey was already shaking when he got into the office and by then, he was terrified. They made some notes and pointed to the screen a few times. The 6 lead EKG was next. They only did 6 and not the requested 12 from the hospital because the doc and his assistant felt they could get the same information with 6 and 12 would be uncomfortable for Joey. By this time, I was on the verge of tears. Especially when saying things like "I don't want to stay still" and "I don't want Bryan to hold me." Bryan wasn't there but I think he was thinking back to the EEG, another scary experience.
The doc left the room while the assistant cleaned up. Once again, like in the EEG, Joey didn't want to pull the sticky things off his chest. The doctor came in and gave me the greatest news I had heard in a long time: Joey's heart was perfect!!
I should have known when Joey asked me in the car today "where are we going" that he was scared we were going to another doctor's appointment. I'm glad we weren't and hope that it will be a week or two before we have to go to another one. Next up, the MRI for his brain.
Monday, August 3, 2009
Neuro appointment today
Joey and I went to see his neuro today. We were told he has parietal lobe epilepsy on the right side. It can affect speech, thought process, etc. We will know more after the MRI, which should be in a few weeks at Phoenix Children's Hospital. He will need to be sedated for this. If it is normal and there are no signs of contusion, scar tissue or brain damage from his fall 3 years ago, then there is hope that he will grow out of it. If there are signs of what I mentioned, he will never grow out of them. He needs to take Depakote 3x per day and hopefully that will improve more things than just minimizing the seizures. We may see improvement in all areas of behavior and functioning.
I also made appointments with his cardiologist and gastroenterologist. Busy day! And here I thought this week would be uneventful.
I also made appointments with his cardiologist and gastroenterologist. Busy day! And here I thought this week would be uneventful.
Sunday, August 2, 2009
Getting my PhD in Google
In this day and age, the minute we hear something we don't know about or are diagnosed with something, or even have symptoms of something, the first place we head to is Google.com. I've been spending a lot of time googling. Sometimes it is too much to handle all at once but it's great to have this info handy 24/7.
Complex Partial Seizures
I liked all of it so I copied and pasted it in here. Good info!
Complex partial seizures cause impaired consciousness and arise from a single brain region. Impaired consciousness implies decreased responsiveness and awareness of self and surroundings. During a complex partial seizure, the patient may not communicate, respond to commands, or remember events that occurred. Consciousness might not be impaired completely. During a complex partial seizure, some patients may make simple verbal responses, follow simple commands, or continue to perform simple or, less commonly, complex motor behaviors such as operating a car. Complex partial seizures typically arise from the temporal lobe but may arise from any cortical region.
Automatisms are quasi-purposeful motor or verbal behaviors that commonly accompany complex partial seizures. The behavior is called quasi-purposeful because it is repeated inappropriately or is inappropriate for the situation. Verbal automatisms range from simple vocalizations, such as moaning, to more complex, comprehensible, stereotyped speech.
Automatisms also may occur during nonepileptic states of confusion (eg, metabolic encephalopathy), after ictus, and during absence seizures. Motor automatisms are classified as simple or complex. Simple motor automatisms include oral automatisms (eg, lip smacking, chewing, swallowing) and manual automatisms (eg, picking, fumbling, patting). Unilateral manual automatisms accompanied by contralateral arm dystonia usually indicates seizure onset from the cerebral hemisphere ipsilateral to the manual automatisms.
Complex motor automatisms are more elaborate, coordinated movements involving bilateral extremities. Examples of complex motor automatisms are cycling movements of the legs and stereotyped swimming movements. De novo automatisms often begin after seizure onset. In other cases, perseverative automatisms occur as repetitions of motor activity that began before the seizure. Bizarre automatisms such as alternating limb movements, right-to-left head rolling, or sexual automatisms may occur with frontal-lobe seizures.
Seizures often begin with a brief aura (simple partial seizure) lasting seconds and then becomes a complex partial seizure. The type of aura is related to the site of cortical onset. Temporal-lobe seizures often begin with a rising abdominal sensation, fear, unreality, or déjà vu. Parietal-lobe seizures may begin with an electrical sensation, tingling, or numbness. Occipital-lobe seizures may begin with visual changes, such as the perception of colored lines, spots, or shapes or even a loss of vision.
Complex partial seizures of the temporal lobe often begin with a motionless stare followed by simple oral or motor automatisms. In contrast, frontal-lobe seizures often begin with vigorous motor automatisms or stereotyped clonic or tonic activity. Extratemporal-lobe seizures may spread quickly to the frontal lobe and produce motor behaviors similar to those associated with complex partial seizures of the frontal lobe. Tonic and dystonic arm posturing may occur in the arm contralateral to the seizure focus. Sustained head or eye turning contralateral to the seizure focus may occur immediately before or simultaneously with clonic or tonic activity elsewhere.
Complex partial seizures often last 30 seconds to 2 minutes. Longer seizures may occur, particularly when the seizures become generalized convulsions. Complex partial status epilepticus may also occur with prolonged episodes of waxing and waning of consciousness.
Retrieved from http://emedicine.medscape.com/article/1183962-overview
Complex Partial Seizures
I liked all of it so I copied and pasted it in here. Good info!
Complex partial seizures cause impaired consciousness and arise from a single brain region. Impaired consciousness implies decreased responsiveness and awareness of self and surroundings. During a complex partial seizure, the patient may not communicate, respond to commands, or remember events that occurred. Consciousness might not be impaired completely. During a complex partial seizure, some patients may make simple verbal responses, follow simple commands, or continue to perform simple or, less commonly, complex motor behaviors such as operating a car. Complex partial seizures typically arise from the temporal lobe but may arise from any cortical region.
Automatisms are quasi-purposeful motor or verbal behaviors that commonly accompany complex partial seizures. The behavior is called quasi-purposeful because it is repeated inappropriately or is inappropriate for the situation. Verbal automatisms range from simple vocalizations, such as moaning, to more complex, comprehensible, stereotyped speech.
Automatisms also may occur during nonepileptic states of confusion (eg, metabolic encephalopathy), after ictus, and during absence seizures. Motor automatisms are classified as simple or complex. Simple motor automatisms include oral automatisms (eg, lip smacking, chewing, swallowing) and manual automatisms (eg, picking, fumbling, patting). Unilateral manual automatisms accompanied by contralateral arm dystonia usually indicates seizure onset from the cerebral hemisphere ipsilateral to the manual automatisms.
Complex motor automatisms are more elaborate, coordinated movements involving bilateral extremities. Examples of complex motor automatisms are cycling movements of the legs and stereotyped swimming movements. De novo automatisms often begin after seizure onset. In other cases, perseverative automatisms occur as repetitions of motor activity that began before the seizure. Bizarre automatisms such as alternating limb movements, right-to-left head rolling, or sexual automatisms may occur with frontal-lobe seizures.
Seizures often begin with a brief aura (simple partial seizure) lasting seconds and then becomes a complex partial seizure. The type of aura is related to the site of cortical onset. Temporal-lobe seizures often begin with a rising abdominal sensation, fear, unreality, or déjà vu. Parietal-lobe seizures may begin with an electrical sensation, tingling, or numbness. Occipital-lobe seizures may begin with visual changes, such as the perception of colored lines, spots, or shapes or even a loss of vision.
Complex partial seizures of the temporal lobe often begin with a motionless stare followed by simple oral or motor automatisms. In contrast, frontal-lobe seizures often begin with vigorous motor automatisms or stereotyped clonic or tonic activity. Extratemporal-lobe seizures may spread quickly to the frontal lobe and produce motor behaviors similar to those associated with complex partial seizures of the frontal lobe. Tonic and dystonic arm posturing may occur in the arm contralateral to the seizure focus. Sustained head or eye turning contralateral to the seizure focus may occur immediately before or simultaneously with clonic or tonic activity elsewhere.
Complex partial seizures often last 30 seconds to 2 minutes. Longer seizures may occur, particularly when the seizures become generalized convulsions. Complex partial status epilepticus may also occur with prolonged episodes of waxing and waning of consciousness.
Retrieved from http://emedicine.medscape.com/article/1183962-overview
Friday, July 31, 2009
Stabbed in the heart
I got a call back from my behavioral pediatrician who just happens to be the wife of Joey's neurologist (she referred me to him). She said that I need to get in to see her husband; that the EEG is showing that Joey is having complex partial seizures and will need an MRI and possibly meds. She said that children that have these also have a high chance of having attention problems in school. When I asked her about the issue with an EKG, she said that while monitoring his heart during the EEG, they showed an arythmia. She said it is common and could be nothing or could be the sign of something serious. He will definitely need another EKG (one with 12 leads) and possibly an Echocardiogram.
Holy Crap!!!
I have a lot of health issues and can deal with anything thrown at me. I just can't deal with anything happening to my son. I'm sure a lot of moms feel that way. I can't live in a bubble but I just feel like he has been through enough. My poor Joey. I just love him so much.
Holy Crap!!!
I have a lot of health issues and can deal with anything thrown at me. I just can't deal with anything happening to my son. I'm sure a lot of moms feel that way. I can't live in a bubble but I just feel like he has been through enough. My poor Joey. I just love him so much.
Thursday, July 30, 2009
EEG results
I should have posted the day of Joey's EEG but I was just so exhaused to do so.
I was supposed to sleep deprive him for 2 nights before the EEG. The first night, Sunday, he fell asleep early. Of course he did! He also had diarrhea in his sleep so I figured that he was not feeling good. The next day, he fell asleep early around 7pm. I figured I would let him sleep for a while and that he would probably get up in the middle of the night and I would just keep him up from then. He woke up at 10pm! By 2am, when he started rubbing his eyes, I figured it was too late to let him sleep so I kept him up. Guess what...I never slept.
We got to the hospital and did not have to wait long to be seen. Joey had just fallen asleep in the car but was up once we entered the building. I was impressed by Phoenix Children's Hospital's neurology department. The people were so kind to Joey. They realized that he wouldn't lay down so they had my husband lay down next to him and restrain his arms and legs. I ended up
leaving the room because Joey got upset every time he saw me. I went out to answer some medical history questions and then waited in the private waiting room. When it was over, Joey got to pick a stuffed animal after they were done washing his hair. He wanted to keep the sticky tape on his chest. As a matter of fact, he wanted to leave his head wrapped with all the electrodes hanging off. Yet another example of him not doing well with transitions.
I spoke to the medical assistant at Joey's primary pediatrician and was told this: the EEG was abnormal and the EKG, that was only done with 2 leads, needs to be redone with 12 leads.
After hours of crying, all I can do now is wait to see the neurologist. I know that an abnormal EEG can mean many things and that I shouldn't get ahead of myself but it's hard not to overreact. I can't even think straight right now.
I was supposed to sleep deprive him for 2 nights before the EEG. The first night, Sunday, he fell asleep early. Of course he did! He also had diarrhea in his sleep so I figured that he was not feeling good. The next day, he fell asleep early around 7pm. I figured I would let him sleep for a while and that he would probably get up in the middle of the night and I would just keep him up from then. He woke up at 10pm! By 2am, when he started rubbing his eyes, I figured it was too late to let him sleep so I kept him up. Guess what...I never slept.
We got to the hospital and did not have to wait long to be seen. Joey had just fallen asleep in the car but was up once we entered the building. I was impressed by Phoenix Children's Hospital's neurology department. The people were so kind to Joey. They realized that he wouldn't lay down so they had my husband lay down next to him and restrain his arms and legs. I ended up
leaving the room because Joey got upset every time he saw me. I went out to answer some medical history questions and then waited in the private waiting room. When it was over, Joey got to pick a stuffed animal after they were done washing his hair. He wanted to keep the sticky tape on his chest. As a matter of fact, he wanted to leave his head wrapped with all the electrodes hanging off. Yet another example of him not doing well with transitions.
I spoke to the medical assistant at Joey's primary pediatrician and was told this: the EEG was abnormal and the EKG, that was only done with 2 leads, needs to be redone with 12 leads.
After hours of crying, all I can do now is wait to see the neurologist. I know that an abnormal EEG can mean many things and that I shouldn't get ahead of myself but it's hard not to overreact. I can't even think straight right now.
Tuesday, July 21, 2009
The National Autism Conference in PA ~ see it free in AZ!
Thank you, Katie Wride, for this information!
The National Autism Conference in Pennsylvania , a premier conference on evidence-based practices for students with autism will be webcasting a number of sessions this year that can be viewed from your computer from August 3-7. (Note: There is a 3 hour time difference!) The webcasts are free and require no preregistration, unless you are interested in continuing education credits. Credits are available from ASHA and for BCBAs for $300. More information and all handouts are available at http://www.outreach .psu.edu/ programs/ Autism/.
The Arizona De partment of Education, Exceptional Student Services will offer a group viewing of 2 sessions of the conference at our Phoenix office at 1535 W. Jeff erson on Tuesday, August 4, and Thursday, August 6 from 10:00-2:00 . Each session includes the webcast presentation followed by 30 minutes for discussion/networki ng. Pre-registration is required through the ADE Calendar of Events by August 1, 2009 : http://www.ade. az.gov/onlinereg istration/ calendar/ RenderCalendar. asp. Handouts will not be available at the event. They must be downloaded by each participant prior to the session at http://www.outreach .psu.edu/ programs/ Autism/.
Tuesday
August 4
10:00 AM- 2:00 PM
Autism/ Evidence-Based Strategies for Effective Early Intervention Programs
Jim Ball
Session to be webcast from the National Autism Conference in Pennsylvania followed by an opportunity for discussion and networking. This presentation will discuss systematic techniques for working with children with autism, focusing on teaching specific skills, enhancing motivation, and generalization training.
Participants must download and print handouts for session # 26 prior to the session at http://www.outreach .psu.edu/ programs/ Autism/
Thursday
August 6
10:00 AM- 2:00 PM
Autism/Preventing and Managing Behavioral Crisis
David Lennox
Session to be webcast from the National Autism Conference in Pennsylvania followed by an opportunity for discussion and networking. This session will review traditional crisis management approaches, as well as contributions from behavior-analytical research and practices for preventing and managing crises.
Participants must download and print handouts for session # 65 prior to the session at http://www.outreach .psu.edu/ programs/ Autism/
The National Autism Conference in Pennsylvania , a premier conference on evidence-based practices for students with autism will be webcasting a number of sessions this year that can be viewed from your computer from August 3-7. (Note: There is a 3 hour time difference!) The webcasts are free and require no preregistration, unless you are interested in continuing education credits. Credits are available from ASHA and for BCBAs for $300. More information and all handouts are available at http://www.outreach .psu.edu/ programs/ Autism/.
The Arizona De partment of Education, Exceptional Student Services will offer a group viewing of 2 sessions of the conference at our Phoenix office at 1535 W. Jeff erson on Tuesday, August 4, and Thursday, August 6 from 10:00-2:00 . Each session includes the webcast presentation followed by 30 minutes for discussion/networki ng. Pre-registration is required through the ADE Calendar of Events by August 1, 2009 : http://www.ade. az.gov/onlinereg istration/ calendar/ RenderCalendar. asp. Handouts will not be available at the event. They must be downloaded by each participant prior to the session at http://www.outreach .psu.edu/ programs/ Autism/.
Tuesday
August 4
10:00 AM- 2:00 PM
Autism/ Evidence-Based Strategies for Effective Early Intervention Programs
Jim Ball
Session to be webcast from the National Autism Conference in Pennsylvania followed by an opportunity for discussion and networking. This presentation will discuss systematic techniques for working with children with autism, focusing on teaching specific skills, enhancing motivation, and generalization training.
Participants must download and print handouts for session # 26 prior to the session at http://www.outreach .psu.edu/ programs/ Autism/
Thursday
August 6
10:00 AM- 2:00 PM
Autism/Preventing and Managing Behavioral Crisis
David Lennox
Session to be webcast from the National Autism Conference in Pennsylvania followed by an opportunity for discussion and networking. This session will review traditional crisis management approaches, as well as contributions from behavior-analytical research and practices for preventing and managing crises.
Participants must download and print handouts for session # 65 prior to the session at http://www.outreach .psu.edu/ programs/ Autism/
Two great websites to find service providers
http://providersear ch.com/Default. aspx helps you find local providers in your area.
www.findingservices .org was created by local families in AZ.
I hope this info helps!
www.findingservices .org was created by local families in AZ.
I hope this info helps!
Monday, July 20, 2009
Gluten Free on the go
Discovered a great website today: www.glutenfreeonthego.com.
It has long been a concern for me to start the diet for my son knowing that we do enjoy eating out a lot. This website will help you out anywhere in the world!
It has long been a concern for me to start the diet for my son knowing that we do enjoy eating out a lot. This website will help you out anywhere in the world!
Sunday, July 19, 2009
Inspiring Story
It's nice to read an inspiring story and it's also nice when it brings Autism awareness to the world, especially those who don't live with it daily.
Here's the link:
http://www.aolhealth.com/health/caregiver-support/autism-horse-boy
Here's the link:
http://www.aolhealth.com/health/caregiver-support/autism-horse-boy
WOW...it's almost been a year
11 months ago, I posted my 1st entry on this blog. I knew it was approaching but didn't realize how soon. We've been on this journery almost a year now; it's hard to remember what life was like before we started.
Music Therapy
Sometimes, things just have a way of working out. I received a flyer on a yahoo group that I am a part of and it made my day. It was advertising music therapy sessions specifically for children with PDD-NOS and Asperger's, who generally don't get services through the state. Trying to cash pay for these services elsewhere usually lands you on a waiting list because those who receive help through DDD get it first. Crazy, huh? The cost is only $15 per session!
Here's the info:
Valley Music Therapy
Tuesdays at 4pm
Scottsdale Bible Church
7601 E Shea Blvd Room E102
Call 480.332.1651
www.valleymusictherapy.com
Here's the info:
Valley Music Therapy
Tuesdays at 4pm
Scottsdale Bible Church
7601 E Shea Blvd Room E102
Call 480.332.1651
www.valleymusictherapy.com
What is Asperger's Syndrome?
Taken from Wikipedia:
Asperger syndrome is an autism spectrum disorder (ASD), and people with it therefore show significant difficulties in social interaction, along with stereotypies and other restricted and repetitive patterns of behavior and interests. It differs from other ASDs by its relative preservation of linguistic and cognitive development. Although not required for diagnosis, physical clumsiness and atypical use of language are frequently reported. It is named after the Austrian pediatrician Hans Asperger who, in 1944, described children in his practice who lacked nonverbal communication skills, demonstrated limited empathy with their peers, and were physically clumsy. Fifty years later, AS was standardized as a diagnosis but questions about many aspects remain. For example, there is lingering doubt about the distinction between AS and high-functioning autism (HFA); partly because of this, the prevalence of AS is not firmly established. The exact cause is unknown, although research supports the likelihood of a genetic basis; brain imaging techniques have not identified a clear common pathology.
There is no single treatment for Asperger syndrome, and the effectiveness of particular interventions is supported by only limited data. Intervention is aimed at improving symptoms and function. The mainstay of management is behavioral therapy, focusing on specific deficits to address poor communication skills, obsessive or repetitive routines, and physical clumsiness. Most individuals with AS improve over time, but difficulties with communication, social adjustment and independent living continue into adulthood. Some researchers and people with AS have advocated a shift in attitudes toward the view that AS is a difference, rather than a disability that must be treated or cured.
Taken from WebMD.com:
Although there are many possible symptoms of Asperger’s syndrome, the main symptom is severe trouble with social situations. Your child may have mild to severe symptoms or have a few or many of these symptoms. Because of the wide variety of symptoms, no two children with Asperger's are alike.
Symptoms during childhood:
Parents often first notice the symptoms of Asperger's syndrome when their child starts preschool and begins to interact with other children. Children with Asperger's syndrome may:
~Not pick up on social cues and may lack inborn social skills, such as being able to read others' body language, start or maintain a conversation, and take turns talking.
~Dislike any changes in routines.
~Appear to lack empathy.
~Be unable to recognize subtle differences in speech tone, pitch, and accent that alter the meaning of others’ speech. Thus, your child may not understand a joke or may take a sarcastic comment literally. Likewise, his or her speech may be flat and difficult to understand because it lacks tone, pitch, and accent.
~Have a formal style of speaking that is advanced for his or her age. For example, the child may use the word "beckon" instead of "call" or the word "return" instead of "come back."
~Avoid eye contact or stare at others.
~Have unusual facial expressions or postures.
~Be preoccupied with only one or few interests, which he or she may be very knowledgeable about. Many children with Asperger's syndrome are overly interested in parts of a whole or in unusual activities, such as designing houses, drawing highly detailed scenes, or studying astronomy. They may show an unusual interest in certain topics such as snakes, names of stars, or dinosaurs.
~Talk a lot, usually about a favorite subject. One-sided conversations are common. Internal thoughts are often verbalized. ~Have delayed motor development. Your child may be late in learning to use a fork or spoon, ride a bike, or catch a ball. He or she may have an awkward walk. Handwriting is often poor.
~Have heightened sensitivity and become overstimulated by loud noises, lights, or strong tastes or textures. For more information about these symptoms, see sensory integration dysfunction.
Ok...after reading this, I can see why the doc at Melmed would say that his diagnosis may change to this. Some people have told me that he can't has Asperger's because he had a speech delay. But he only had that because he couldn't hear. He started speaking right away after his tubes were put in.
Asperger syndrome is an autism spectrum disorder (ASD), and people with it therefore show significant difficulties in social interaction, along with stereotypies and other restricted and repetitive patterns of behavior and interests. It differs from other ASDs by its relative preservation of linguistic and cognitive development. Although not required for diagnosis, physical clumsiness and atypical use of language are frequently reported. It is named after the Austrian pediatrician Hans Asperger who, in 1944, described children in his practice who lacked nonverbal communication skills, demonstrated limited empathy with their peers, and were physically clumsy. Fifty years later, AS was standardized as a diagnosis but questions about many aspects remain. For example, there is lingering doubt about the distinction between AS and high-functioning autism (HFA); partly because of this, the prevalence of AS is not firmly established. The exact cause is unknown, although research supports the likelihood of a genetic basis; brain imaging techniques have not identified a clear common pathology.
There is no single treatment for Asperger syndrome, and the effectiveness of particular interventions is supported by only limited data. Intervention is aimed at improving symptoms and function. The mainstay of management is behavioral therapy, focusing on specific deficits to address poor communication skills, obsessive or repetitive routines, and physical clumsiness. Most individuals with AS improve over time, but difficulties with communication, social adjustment and independent living continue into adulthood. Some researchers and people with AS have advocated a shift in attitudes toward the view that AS is a difference, rather than a disability that must be treated or cured.
Taken from WebMD.com:
Although there are many possible symptoms of Asperger’s syndrome, the main symptom is severe trouble with social situations. Your child may have mild to severe symptoms or have a few or many of these symptoms. Because of the wide variety of symptoms, no two children with Asperger's are alike.
Symptoms during childhood:
Parents often first notice the symptoms of Asperger's syndrome when their child starts preschool and begins to interact with other children. Children with Asperger's syndrome may:
~Not pick up on social cues and may lack inborn social skills, such as being able to read others' body language, start or maintain a conversation, and take turns talking.
~Dislike any changes in routines.
~Appear to lack empathy.
~Be unable to recognize subtle differences in speech tone, pitch, and accent that alter the meaning of others’ speech. Thus, your child may not understand a joke or may take a sarcastic comment literally. Likewise, his or her speech may be flat and difficult to understand because it lacks tone, pitch, and accent.
~Have a formal style of speaking that is advanced for his or her age. For example, the child may use the word "beckon" instead of "call" or the word "return" instead of "come back."
~Avoid eye contact or stare at others.
~Have unusual facial expressions or postures.
~Be preoccupied with only one or few interests, which he or she may be very knowledgeable about. Many children with Asperger's syndrome are overly interested in parts of a whole or in unusual activities, such as designing houses, drawing highly detailed scenes, or studying astronomy. They may show an unusual interest in certain topics such as snakes, names of stars, or dinosaurs.
~Talk a lot, usually about a favorite subject. One-sided conversations are common. Internal thoughts are often verbalized. ~Have delayed motor development. Your child may be late in learning to use a fork or spoon, ride a bike, or catch a ball. He or she may have an awkward walk. Handwriting is often poor.
~Have heightened sensitivity and become overstimulated by loud noises, lights, or strong tastes or textures. For more information about these symptoms, see sensory integration dysfunction.
A child with one or two of these symptoms does not necessarily have Asperger’s syndrome. To be diagnosed with Asperger’s syndrome, a child must have a combination of these symptoms and severe trouble with social situations.
Although the condition is in some ways similar to autism, a child with Asperger's syndrome typically has normal language and intellectual development. Also, those with Asperger's syndrome typically make more of an effort than those with autism to make friends and engage in activities with others.
Ok...after reading this, I can see why the doc at Melmed would say that his diagnosis may change to this. Some people have told me that he can't has Asperger's because he had a speech delay. But he only had that because he couldn't hear. He started speaking right away after his tubes were put in.
1st gluten free dinner
Wrote this last night but never posted it....
I just finished cooking my 1st gluten free dinner. Joey is a picky eater but at least he ate some of it so there's hope! I cooked up Trader's Joe's mac & cheese and Whole Foods chicken tenders. It's a start!
I was told that until I have Joey evaluated by a gastro doc that I should wait to go completely GFCF. Until then, I am slowly substituting his favorite things so that I can load up my arsenal for when we are ready to go full throttle!
I just finished cooking my 1st gluten free dinner. Joey is a picky eater but at least he ate some of it so there's hope! I cooked up Trader's Joe's mac & cheese and Whole Foods chicken tenders. It's a start!
I was told that until I have Joey evaluated by a gastro doc that I should wait to go completely GFCF. Until then, I am slowly substituting his favorite things so that I can load up my arsenal for when we are ready to go full throttle!
Thursday, July 16, 2009
SARRC's Jump Start Program ~ Day 1 (7/15)
Yesterday was our 1st day at SARRC's Jump Start Program. I was on the waitlist for this since January and had to pay the full $500 tuition for it 6 weeks before the start date. Do you think we were excited? You bet we were!
What made it bittersweet was that my ex-husband just happened to be in town for a few days so he was able to make it to the 1st day. I really didn't think he would go but he did and it seemed like he wanted to be there. Well, he showed as much enthusiasm as he's capable, which is not much, but it was good for him.
The 1st part of the 3 hour session is always a lecture and the 2nd part is either observation or one on one training with your child. Yesterday's lecture was basically an introduction to the program and to Autism; basic descriptions of the Spectrum and treatments for it.
I really think that my ex finally understood that yes, there is something going on with his son and that it's a good thing Mommy hasn't buried her head in the sand the way Daddy has for the past year.
I am looking forward to the next few weeks and am already putting some of the DTT techniques they briefly touched upon yesterday.
What made it bittersweet was that my ex-husband just happened to be in town for a few days so he was able to make it to the 1st day. I really didn't think he would go but he did and it seemed like he wanted to be there. Well, he showed as much enthusiasm as he's capable, which is not much, but it was good for him.
The 1st part of the 3 hour session is always a lecture and the 2nd part is either observation or one on one training with your child. Yesterday's lecture was basically an introduction to the program and to Autism; basic descriptions of the Spectrum and treatments for it.
I really think that my ex finally understood that yes, there is something going on with his son and that it's a good thing Mommy hasn't buried her head in the sand the way Daddy has for the past year.
I am looking forward to the next few weeks and am already putting some of the DTT techniques they briefly touched upon yesterday.
The Frustrating EEG
Tuesday was our 2nd attempt at getting an EEG done. The first was last Wednesday. I sleep deprived him and myself and he wouldn't get near the table. This time, I had the neurologist prescribe a mild sedative that I would give him beforehand to calm him down. 1 1/2 doses later, he would still not get near the table. He was so scared that he was fighting sleep and when he did fall asleep, the slightest crinkle of the paper on the table woke him up. It's so hard to see your child crying and begging you to go home when you're trying to take care of him. I hate those times but I guess it comes with the territory.
I am in the process of getting it done at Phoenix Children's Hospital. Even though they won't sedate him, they are better equipped to work with him and get it done. I'll keep you all posted.
I am in the process of getting it done at Phoenix Children's Hospital. Even though they won't sedate him, they are better equipped to work with him and get it done. I'll keep you all posted.
Wednesday, July 8, 2009
Upcoming Events at SARRC
These are just two that I am hoping to attend. There are many more on SARRC's website at http://www.autismcenter.org/.
Sleep Issues
The Southwest Autism Research & Resource Center (SARRC) Education and Training Program offers topic-based training activities for parents, educators, therapists, psychologists, administrators, paraprofessionals, habilitators, social workers, and others that live or work with individuals with autism spectrum disorders (ASD). Trainings are led by local and national speakers in the field of autism spectrum disorders. This program provides opportunities for advancing the abilities of individuals with ASDs, increasing their level of quality care and instruction, and raising awareness of ASDs. Equally important, it promotes understanding and acceptance from the home, classroom and playground to the workplace and community at-large.
Training activities are recommended for parents, educators, therapists, habilitators, and others working or living with an individual with autism spectrum disorders (ASD).
When: Monday, July 13, 2009
Time: 1 p.m. - 3 p.m.
Where: SARRC Main Campus for Exceptional Children 300 N. 18th Street, Phx, AZ 85006
Cost: Please call SARRC at (480) 603-3283
Toilet Training
The Southwest Autism Research & Resource Center (SARRC) Education and Training Program offers topic-based training activities for parents, educators, therapists, psychologists, administrators, paraprofessionals, habilitators, social workers, and others that live or work with individuals with autism spectrum disorders (ASD). Trainings are led by local and national speakers in the field of autism spectrum disorders. This program provides opportunities for advancing the abilities of individuals with ASDs, increasing their level of quality care and instruction, and raising awareness of ASDs. Equally important, it promotes understanding and acceptance from the home, classroom and playground to the workplace and community at-large.
Training activities are recommended for parents, educators, therapists, habilitators, and others working or living with an individual with autism spectrum disorders (ASD).
When: Monday, August 10, 2009
Time: 9 a.m. - 12 p.m.
Where: SARRC Main Campus for Exceptional Children 300 N. 18th Street, Phx, AZ 85006
Cost: Please call SARRC at (480) 603-3283
Sleep Issues
The Southwest Autism Research & Resource Center (SARRC) Education and Training Program offers topic-based training activities for parents, educators, therapists, psychologists, administrators, paraprofessionals, habilitators, social workers, and others that live or work with individuals with autism spectrum disorders (ASD). Trainings are led by local and national speakers in the field of autism spectrum disorders. This program provides opportunities for advancing the abilities of individuals with ASDs, increasing their level of quality care and instruction, and raising awareness of ASDs. Equally important, it promotes understanding and acceptance from the home, classroom and playground to the workplace and community at-large.
Training activities are recommended for parents, educators, therapists, habilitators, and others working or living with an individual with autism spectrum disorders (ASD).
When: Monday, July 13, 2009
Time: 1 p.m. - 3 p.m.
Where: SARRC Main Campus for Exceptional Children 300 N. 18th Street, Phx, AZ 85006
Cost: Please call SARRC at (480) 603-3283
Toilet Training
The Southwest Autism Research & Resource Center (SARRC) Education and Training Program offers topic-based training activities for parents, educators, therapists, psychologists, administrators, paraprofessionals, habilitators, social workers, and others that live or work with individuals with autism spectrum disorders (ASD). Trainings are led by local and national speakers in the field of autism spectrum disorders. This program provides opportunities for advancing the abilities of individuals with ASDs, increasing their level of quality care and instruction, and raising awareness of ASDs. Equally important, it promotes understanding and acceptance from the home, classroom and playground to the workplace and community at-large.
Training activities are recommended for parents, educators, therapists, habilitators, and others working or living with an individual with autism spectrum disorders (ASD).
When: Monday, August 10, 2009
Time: 9 a.m. - 12 p.m.
Where: SARRC Main Campus for Exceptional Children 300 N. 18th Street, Phx, AZ 85006
Cost: Please call SARRC at (480) 603-3283
SARRC needs participants for upcoming research
SARRC (Southwest Autism Research & Resouce Center) is in need of participants for their new research study. I have taken part in a research project there before so I can tell you firsthand that they are great to work with and are sensitive with their subject matter.
Here's the info:
Your child must be 6-12 years of age. The program is called ConnectMe and it is a clinical research trial of an investigational medication.
Please call 602-218-8225 or go to www.autismcenter.org if you are interested in taking part of this study. With the help of participants, we get closer to finding the cause of Autism and possibly, a cure.
Here's the info:
Your child must be 6-12 years of age. The program is called ConnectMe and it is a clinical research trial of an investigational medication.
Please call 602-218-8225 or go to www.autismcenter.org if you are interested in taking part of this study. With the help of participants, we get closer to finding the cause of Autism and possibly, a cure.
Tuesday, July 7, 2009
I love to take baths but never thought about a clay one
In reading up on chelation, I stumbled upon clay baths. It's sort of a home remedy instead of spending a lot of money on chelation, the process of detoxifying the body of heavy metals.
Here is the website:
http://www.newspiritservices.com/claybath.html
It seems like a simple process; one that I would try on myself before I attempt to try it on my son. I will keep you posted.
Here is the website:
http://www.newspiritservices.com/claybath.html
It seems like a simple process; one that I would try on myself before I attempt to try it on my son. I will keep you posted.
He needs a what...?
Last Wednesday, something happened twice within a half an hour that has happened before. Joey blanks out. It's the only way I can explain it. He's had them before but I never noticed him having them twice in one day. I did some research later that night and found out that they are called absence seizures. I called his behavioral pediatrician and she said that all though it wasnt' life or death circumstances, she wanted him to be seen right away for a sleep-deprived EEG. Coincidentally, her hubby is a neuro. I called my insurance company today and he was listed as a contracted doc (I later found out that they don't take my plan so it's cash pay). My appointment is set for this Wednesday.
Thursday, July 2, 2009
I made the Type-A Mom homepage once again!
Check out www.typeamom.net under Mom Topics and you will find my new article; "When a Child on the Autism Spectrum is Part of the Wedding."
I took a previous blog post and made it into an article. It marks the 1st time I've written in 10 months and the 1st time I've written about Joey's diagnosis in an article. It makes sense that I stopped writing 10 months ago. That's when Joey was diagnosed and I couldn't find the words to put into article form but started blogging instead. Free flowing writing is what I needed at the time.
I hope you enjoy the article.
I took a previous blog post and made it into an article. It marks the 1st time I've written in 10 months and the 1st time I've written about Joey's diagnosis in an article. It makes sense that I stopped writing 10 months ago. That's when Joey was diagnosed and I couldn't find the words to put into article form but started blogging instead. Free flowing writing is what I needed at the time.
I hope you enjoy the article.
Monday, June 22, 2009
Autism Events in Phoenix
Monthly Coco's Meeting
"Please join us tomorrow (June 23rd) at Coco's Meeting at 6:30 in the backroom of the Paradise Valley location (Tatum and Cactus). We will have a surprisespeaker who will speak about a new study their non-profit is designing andwhat kind of applicants they are looking for.
We will then have Dr. JoelMorgan speak. Here is his bio:
Dr. Joel Morgan is the medical director of Pediatric Solutions MedicalCenter, where the focus is in Naturopathic family care, as well as thespecialty treatment of individuals with autism, ADHD/ADD, asthma, allergiesand intestinal health issues. Dr. Morgan graduated with honors from ArizonaState University earning a degree in Nutrition and later received hisDoctorate of Naturopathic Medicine from the Southwest College ofNaturopathic Medicine. He completed a residency in family practice with afocus in the treatment of children within the Autism Spectrum Disorders.His approach to autism stresses the importance of the relationship betweenphysician and patient and their family, centered on the whole person, whilemaking use of all appropriate therapeutic approaches, alternative andconventional.Dr. Morgan became involved in the world of autism through his experienceswith his son. He is a listed Defeat Autism Now! Doctor, has trained withDr. Bryan Jepson, Dr. Arthur Krigsman and Dr. Andrew Wakefield at theThoughtful House Center for Kids in Austin, TX, and completed medicalrotations at the Melmed Center, a leading facility in the assessment ofbehavioral, educational and developmental challenges in children and adults;and the Hamilton Elementary Medical Center, a district-wide, free healthcare clinic that serves the poverty-stricken families of the Murphy SchoolDistrict."
Thank you, Cynthia Macluskie for this information!
Lecture on the developmental aberrations in the Autistic child.
This two hour lecture will cover the developmental aberrations in the autistic child. It will address what can be done about autism to stimulate the Autistic/PDD/ Asperger child to a higher level of function.
Time: 6-8:00 pm.
Location: Sunflower Market, 4402 North Miller Road - Scottsdale, South of Camelback on Miller between Hayden & Scottsdale Rd. 480-941-6001
By: Healing Pathways Medical Clinic, 2133 Warner Road - TempeUtilizing naturopathic and biomedical adjuncts to support the biochemistry of the body. Utilizing neuro developmental therapies and models to complete developmental milestones and organize the body and brain to higher levels of function. Providing education to the caregivers and healthcare professionals. AZ Dept. of Education certificates for Professional Development CEUs available for $20
Thank you, Kelly Reedy, for this information.
P.S. Don't forget about the Parents Night Out, July 10th!
"Please join us tomorrow (June 23rd) at Coco's Meeting at 6:30 in the backroom of the Paradise Valley location (Tatum and Cactus). We will have a surprisespeaker who will speak about a new study their non-profit is designing andwhat kind of applicants they are looking for.
We will then have Dr. JoelMorgan speak. Here is his bio:
Dr. Joel Morgan is the medical director of Pediatric Solutions MedicalCenter, where the focus is in Naturopathic family care, as well as thespecialty treatment of individuals with autism, ADHD/ADD, asthma, allergiesand intestinal health issues. Dr. Morgan graduated with honors from ArizonaState University earning a degree in Nutrition and later received hisDoctorate of Naturopathic Medicine from the Southwest College ofNaturopathic Medicine. He completed a residency in family practice with afocus in the treatment of children within the Autism Spectrum Disorders.His approach to autism stresses the importance of the relationship betweenphysician and patient and their family, centered on the whole person, whilemaking use of all appropriate therapeutic approaches, alternative andconventional.Dr. Morgan became involved in the world of autism through his experienceswith his son. He is a listed Defeat Autism Now! Doctor, has trained withDr. Bryan Jepson, Dr. Arthur Krigsman and Dr. Andrew Wakefield at theThoughtful House Center for Kids in Austin, TX, and completed medicalrotations at the Melmed Center, a leading facility in the assessment ofbehavioral, educational and developmental challenges in children and adults;and the Hamilton Elementary Medical Center, a district-wide, free healthcare clinic that serves the poverty-stricken families of the Murphy SchoolDistrict."
Thank you, Cynthia Macluskie for this information!
Lecture on the developmental aberrations in the Autistic child.
This two hour lecture will cover the developmental aberrations in the autistic child. It will address what can be done about autism to stimulate the Autistic/PDD/ Asperger child to a higher level of function.
Time: 6-8:00 pm.
Location: Sunflower Market, 4402 North Miller Road - Scottsdale, South of Camelback on Miller between Hayden & Scottsdale Rd. 480-941-6001
By: Healing Pathways Medical Clinic, 2133 Warner Road - TempeUtilizing naturopathic and biomedical adjuncts to support the biochemistry of the body. Utilizing neuro developmental therapies and models to complete developmental milestones and organize the body and brain to higher levels of function. Providing education to the caregivers and healthcare professionals. AZ Dept. of Education certificates for Professional Development CEUs available for $20
Thank you, Kelly Reedy, for this information.
P.S. Don't forget about the Parents Night Out, July 10th!
Saturday, June 20, 2009
How could I forget to talk about my wedding?
I am such an ass! I never reported on how Joey did during the events that lead up to the wedding, during the Big Day and afterwards. Where has my head been?
The weekend was stressful for everyone, including Joey. With people staying at our house, he had less of my attention than he is used to. Plus, he is so set in his routine that he hates when any part of it is disrupted. He loved having Lisa, Dawn, Shannon and Skye over and still mentions their names, which is huge, but his behavior was definitely severe.
The day of the wedding, well...let's just say he was less than compliant getting his tux on. My 2 cousins had to wrestle with him to get him dressed and my sister-in-law had to carry him into the limo. He stood for some prep pictures in our house but did not smile and did not want to take any of just the two of us. This was to be expected because he runs hot and cold when it comes to getting him to take pictures other than snapshots.
When we arrived at Corte Bella, he did not want to get out of the limo. He was dragged out by my family and was disheveled. He ran around and screamed for 30 minutes until it was time to walk down the aisle. He lined up behind the flower girl but still did not want to comply with the photographer. I was just happy he still had his vest and shoes on. This was a bonus for me.
As it approached the time for him to walk down the aisle, my Dad offered him the ringbearer pillow. He had a meltdown and I threw the pillow, narrowly missing the chocolate fountain. When it was his time for him to walk, he ran away and sat down on a seat outside. I continued my walk down the aisle and to my surprise, as my parents gave me away, I turned and saw my Joey running down the aisle towards me. He grabbed my hand and then Bryan's and stayed with us during the ceremony. He wanted to light the unity candle, which was not good, but when it came to the sand ceremony, it worked out perfectly that I had extra sand just for him. I let him pick his color and he poured with us. It was perfect.
There was just one more thing: the family vows. When the minister asked Joey if he took Bryan as his stepfather, Joey just nodded his head and then silently said yes. There wasn't a dry eye in the house. Everyone let out a collective "awww.'
Joey sat well for some pictures and the photographer got some really great shots. It was also a good idea that the Minister gave us to give him is own special gift, which was 2 custom made Bride & Groom Legos to give Joey. He called them Mommy Princess and Bryan Prince. He loves Legos so it was a perfect gift! He held them all night.
I also had a babysitter at the wedding to watch over him while I was busy taking nighttime pictures or cutting cake. She is a trained caregiver for Autistic children, plus has a son on the Spectrum, so I knew she would have patience with him.
The night was a success. I'm so glad it worked out. My best advice to couples facing the same adventure is to set realistic expectations and have help on hand. Truly knowing what your child can handle and having people who understand them is the best you thing you can do for all involved.
The weekend was stressful for everyone, including Joey. With people staying at our house, he had less of my attention than he is used to. Plus, he is so set in his routine that he hates when any part of it is disrupted. He loved having Lisa, Dawn, Shannon and Skye over and still mentions their names, which is huge, but his behavior was definitely severe.
The day of the wedding, well...let's just say he was less than compliant getting his tux on. My 2 cousins had to wrestle with him to get him dressed and my sister-in-law had to carry him into the limo. He stood for some prep pictures in our house but did not smile and did not want to take any of just the two of us. This was to be expected because he runs hot and cold when it comes to getting him to take pictures other than snapshots.
When we arrived at Corte Bella, he did not want to get out of the limo. He was dragged out by my family and was disheveled. He ran around and screamed for 30 minutes until it was time to walk down the aisle. He lined up behind the flower girl but still did not want to comply with the photographer. I was just happy he still had his vest and shoes on. This was a bonus for me.
As it approached the time for him to walk down the aisle, my Dad offered him the ringbearer pillow. He had a meltdown and I threw the pillow, narrowly missing the chocolate fountain. When it was his time for him to walk, he ran away and sat down on a seat outside. I continued my walk down the aisle and to my surprise, as my parents gave me away, I turned and saw my Joey running down the aisle towards me. He grabbed my hand and then Bryan's and stayed with us during the ceremony. He wanted to light the unity candle, which was not good, but when it came to the sand ceremony, it worked out perfectly that I had extra sand just for him. I let him pick his color and he poured with us. It was perfect.
There was just one more thing: the family vows. When the minister asked Joey if he took Bryan as his stepfather, Joey just nodded his head and then silently said yes. There wasn't a dry eye in the house. Everyone let out a collective "awww.'
Joey sat well for some pictures and the photographer got some really great shots. It was also a good idea that the Minister gave us to give him is own special gift, which was 2 custom made Bride & Groom Legos to give Joey. He called them Mommy Princess and Bryan Prince. He loves Legos so it was a perfect gift! He held them all night.
I also had a babysitter at the wedding to watch over him while I was busy taking nighttime pictures or cutting cake. She is a trained caregiver for Autistic children, plus has a son on the Spectrum, so I knew she would have patience with him.
The night was a success. I'm so glad it worked out. My best advice to couples facing the same adventure is to set realistic expectations and have help on hand. Truly knowing what your child can handle and having people who understand them is the best you thing you can do for all involved.
IVIG, EEG, Chelation and other things that make you say "Huh?"
Entering the world of Autism is confusing enough without all these strange words and phrases being tossed around. I'm here to lessen the confusion while I learn on my own (I have never tried any of these).
IVIG:
"Intravenous immune globulin (IVIG) is a blood product administered intravenously. It contains the pooled IgG immunoglobulins (antibodies) extracted from the plasma of over one thousand blood donors. IVIG's effects last between 2 weeks and 3 months. It is mainly used as treatment in three major categories:
Immune deficiencies - Immune deficiencies such as X-linked agammaglobulinemia, hypogammaglobulinemia (primary immune deficiencies), and acquired compromised immunity conditions ([secondary immune deficiencies), featuring low antibody levels.
Inflammatory and autoimmune diseases.
Acute infections."
Retrieved from http://en.wikipedia.org/wiki/Intravenous_immunoglobulin
How does IVIG helps our kids?
"The rational for use of IVIG in children with autism has been (1) the assumption that bowel colonization with certain viruses (measles and rubella viruses) can result in an autoimmune reaction resulting in symptoms of autism (Wakefield, Gupta), and more recently (2) that PANDAS or PITAND-type pathophysiology can be responsible for the development of certain cases of autism. An additional boost for IVIG use in autism have been recent reports describing the appearance of classic autistic symptoms in patients following Herpes simplex encephalitis. Despite of the initial optimism generated with Gupta's reports, later experiences with IVIG therapy in autism have failed to duplicate his results."
"Even with the reported failures of IVIG treatment in autism, it will continue to play an important supportive role in the future therapeutic approaches to this condition, since IVIG appears to have a protective effect on the brain tissue. Unfortunately, the cost of this treatment is very steep and with uncertainty of the outcome of treatment it should be considered only in well chosen patients. Again, the intensity and the frequency of treatment and the duration of its benefits (if achieved) are not known."
Retrieved from http://www.webpediatrics.com/autism2.html
EEG:
"An electroencephalogram (EEG) is a test that measures and records the electrical activity of your brain. Special sensors (electrodes) are attached to your head and hooked by wires to a computer. The computer records your brain's electrical activity on the screen or on paper as wavy lines. Certain conditions, such as seizures, can be seen by the changes in the normal pattern of the brain's electrical activity."
Retrieved from http://www.webmd.com/epilepsy/electroencephalogram-eeg-21508
The EEG/Autism Connection:
"Approximately 20% to 35% of individuals with autism have a seizure disorder. About one in four autistic individuals begin to have seizures during puberty. The exact reason for the onset of seizures is not known, but it is likely that the seizure activity may be due to hormonal changes in the body. Sometimes these seizures are noticeable, (ie. associated with convulsions); but, for many, they are small, subclinical seizures, and are typically not detected by simple observation. Some possible signs of subclinical activity include the following: exhibiting behavior problems, such as aggression, self-injury, and severe tantrums; making little or no academic gains after doing well during childhood and pre-teen years; and/or losing some behavioral and/or cognitive gains. "
IVIG:
"Intravenous immune globulin (IVIG) is a blood product administered intravenously. It contains the pooled IgG immunoglobulins (antibodies) extracted from the plasma of over one thousand blood donors. IVIG's effects last between 2 weeks and 3 months. It is mainly used as treatment in three major categories:
Immune deficiencies - Immune deficiencies such as X-linked agammaglobulinemia, hypogammaglobulinemia (primary immune deficiencies), and acquired compromised immunity conditions ([secondary immune deficiencies), featuring low antibody levels.
Inflammatory and autoimmune diseases.
Acute infections."
Retrieved from http://en.wikipedia.org/wiki/Intravenous_immunoglobulin
How does IVIG helps our kids?
"The rational for use of IVIG in children with autism has been (1) the assumption that bowel colonization with certain viruses (measles and rubella viruses) can result in an autoimmune reaction resulting in symptoms of autism (Wakefield, Gupta), and more recently (2) that PANDAS or PITAND-type pathophysiology can be responsible for the development of certain cases of autism. An additional boost for IVIG use in autism have been recent reports describing the appearance of classic autistic symptoms in patients following Herpes simplex encephalitis. Despite of the initial optimism generated with Gupta's reports, later experiences with IVIG therapy in autism have failed to duplicate his results."
"Even with the reported failures of IVIG treatment in autism, it will continue to play an important supportive role in the future therapeutic approaches to this condition, since IVIG appears to have a protective effect on the brain tissue. Unfortunately, the cost of this treatment is very steep and with uncertainty of the outcome of treatment it should be considered only in well chosen patients. Again, the intensity and the frequency of treatment and the duration of its benefits (if achieved) are not known."
Retrieved from http://www.webpediatrics.com/autism2.html
EEG:
"An electroencephalogram (EEG) is a test that measures and records the electrical activity of your brain. Special sensors (electrodes) are attached to your head and hooked by wires to a computer. The computer records your brain's electrical activity on the screen or on paper as wavy lines. Certain conditions, such as seizures, can be seen by the changes in the normal pattern of the brain's electrical activity."
Retrieved from http://www.webmd.com/epilepsy/electroencephalogram-eeg-21508
The EEG/Autism Connection:
"Approximately 20% to 35% of individuals with autism have a seizure disorder. About one in four autistic individuals begin to have seizures during puberty. The exact reason for the onset of seizures is not known, but it is likely that the seizure activity may be due to hormonal changes in the body. Sometimes these seizures are noticeable, (ie. associated with convulsions); but, for many, they are small, subclinical seizures, and are typically not detected by simple observation. Some possible signs of subclinical activity include the following: exhibiting behavior problems, such as aggression, self-injury, and severe tantrums; making little or no academic gains after doing well during childhood and pre-teen years; and/or losing some behavioral and/or cognitive gains. "
Retrieved from http://www.examiner.com/x-3971-Philadelphia-Special-Needs-Kids-Examiner~y2009m2d23-Seizures-in-Autistic-Children
Chelation
"Chelation therapy is the administration of chelating agents to remove heavy metals from the body. For the most common forms of heavy metal intoxication—those involving lead, arsenic or mercury—the standard of care in the USA dictates the use of dimercaptosuccinic acid (DMSA).[citation needed] Other chelating agents, such as 2,3-dimercapto-1-propanesulfonic acid (DMPS) and alpha lipoic acid (ALA), are used in conventional and alternative medicine."
Retrieved from http://en.wikipedia.org/wiki/Chelation_therapy
Why do Autistic people try this?
"Our children are exposed to more and more toxic metals and chemicals every day, such as mercury, lead, food additives, pesticides, vaccination toxins, and so on. In some children, especially those on the spectrum, these toxins build up in their systems due to a “metal-metabolism” disorder.In other words, they are genetically unable to detoxify sufficiently. This causes neurological as well as digestive problems. As a result, chelation therapies to remove toxic metals including thimerosal (mercury from vaccinations) from the body are now a cornerstone with DAN (Defeat Autism Now) doctors and other experts treating childhood neurological & behavioral conditions."
Retrieved from http://www.evenbetternow.com/autism.asp?s=gaw5&gclid=COm8va2qxZsCFR7yDAodq2qwBg
DAN Doctor
"Mainstream medical practitioners tend to believe that autism is probably caused by a combination of genetic and structural differences. As a result, they stress a combination of behavioral therapies and, when warranted, pharmaceutical treatments. There are many doctors and therapists, however, who believe strongly that autism is caused by biomedical factors (toxins, immune deficiencies, inflammation in the "gut," and/or a combination of these and other issues).
The Defeat Autism Now (DAN!) project, created by the Autism Research Institute, created an approach to autism treatment called the "DAN! protocol" based on the biomedical theory of autism. Many parents believe that DAN! doctors are the best choice to treat their children with autism, and there are many testimonials to the effectiveness of the treatments. DAN! doctors, however, do often prescribe treatments and diets that mainstream doctors question or even denounce."
Retrieved from http://autism.about.com/b/2007/04/11/what-is-a-dan-defeat-autism-now-doctor.htm
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