Monday, August 31, 2009

Car emergency cards for Autistic kids: Paramedic approved!

Great article from The Autism News today. Here's the link:

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

The movie "Adam"

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."

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.

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.

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:

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.

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.

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).

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

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:

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.

"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!!!

Monday, August 17, 2009


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.

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 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

Great site

Found this site through the Epilepsy Foundation:

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:
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.

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!

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.

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 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.


Wednesday, August 5, 2009

Pulling him through the window

Associated Content Writer

That's me! Just had my 2nd article posted today. Here's the link (Sanity Saving Exersaucer) :

1st article link here (Dating After Divorce) :

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.

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.

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 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