Today is a big day. Not only do both boys have big medical appointments
today, but Joey is going on his one and only play date (probably too old
to call it that) this entire summer. He is very excited that his friend
Joshua wanted to see him before he changes schools this year. I can
tell this means a lot to him. He is so excited.
The summer time can really remind you of how isolated your child is. Although we do a lot to get him out and around other kids, it still stings when you realize how alone your kid is. Joey seems fine with it. Sometimes I think it's a gift that he doesn't get emotionally attached or feel overly hurt not having a lot of friends.
I'm still feeling the sting from last Saturday of him not being invited to the sleep over by his best friend.
Having a kid is rough. I feel like I'm reliving my social anxiety all over again through him.
I am so glad Joshua's mom reached out to me to get the boys together because Joshua has so much fun with Joey. The smile on Joey's face made my entire year.
This blog is about my 8 year old son Joey and our journey into diagnosing his PDD-NOS and Epilepsy, learning from it and helping others, as well as being a great place to store all the information I gather along the way.
Thursday, July 26, 2012
Monday, July 23, 2012
Being different
Some days remind you that your kid really is different. And it hurts.
That was my Twitter status on Saturday.
And as much as my friends tried to tell me that "being different" is ok, and in some ways, really good, they don't understand. They don't get it. We Autism parents just want our kids to be the same, we want them to fit in. We think that every bad thing they do is also great because it means they are imitating their peers.
Am I weird for wanting my kid to hang out with kids and go through peer situations because they are good learning experiences.
I had a rough day with my son Saturday. He wasn't following directions to get ready. We were late for tutoring at the library and were running in. He couldn't keep up and I was angry. This brought stares from the snooty Jr. librarian. Then, watching Joey in the play area and seeing other moms stare as he ignored their children. Then, later, finding out that his "best friend" left him off the list for a super cool sleep over.
I cried so much that day. Partly, because I feel I failed as a Mom by not giving him a sibling. Not giving him a permanent playmate.
As 2nd grade approaches and I wonder what it will bring, I am so nervous as everything seems to get harder. Homework. Social situations. Reading. Life.
Once this exam is over, I really need to find something to help me feel better. To help me get through. Because I think I'm starting to lose it.
That was my Twitter status on Saturday.
And as much as my friends tried to tell me that "being different" is ok, and in some ways, really good, they don't understand. They don't get it. We Autism parents just want our kids to be the same, we want them to fit in. We think that every bad thing they do is also great because it means they are imitating their peers.
Am I weird for wanting my kid to hang out with kids and go through peer situations because they are good learning experiences.
I had a rough day with my son Saturday. He wasn't following directions to get ready. We were late for tutoring at the library and were running in. He couldn't keep up and I was angry. This brought stares from the snooty Jr. librarian. Then, watching Joey in the play area and seeing other moms stare as he ignored their children. Then, later, finding out that his "best friend" left him off the list for a super cool sleep over.
I cried so much that day. Partly, because I feel I failed as a Mom by not giving him a sibling. Not giving him a permanent playmate.
As 2nd grade approaches and I wonder what it will bring, I am so nervous as everything seems to get harder. Homework. Social situations. Reading. Life.
Once this exam is over, I really need to find something to help me feel better. To help me get through. Because I think I'm starting to lose it.
Tuesday, July 17, 2012
Survey for 1 year olds for potential risk of ASD diagnosis
Amazing!
Link: http://www.huffingtonpost.com/2012/07/16/diagnosing-autism-babies-survey-parents-detection_n_1676878.html?ref=topbar&ncid=edlinkusaolp00000008
Diagnosing Autism In Babies: New Survey Could Identify Disorder In First Year Of Life
Link: http://www.huffingtonpost.com/2012/07/16/diagnosing-autism-babies-survey-parents-detection_n_1676878.html?ref=topbar&ncid=edlinkusaolp00000008
Diagnosing Autism In Babies: New Survey Could Identify Disorder In First Year Of Life
Posted: 07/16/2012 5:11 pm Updated: 07/16/2012 5:22 pm
Follow:
A questionnaire could help identify children at risk for autism in their first year of life, new research shows, and that could affect how early children start intervention programs as well as those programs' effectiveness.
"Identification of children at risk for [autism spectrum disorder] at 12 months could provide a substantial number of children and their families with access to intervention services months or years before they would otherwise receive a traditional diagnosis," study co-author Lauren Turner-Brown, a researcher with the Program for Early Autism, Research, Leadership and Service at the University of North Carolina School of Medicine said in a statement.
Nearly 700 parents completed the "First Year Inventory" questionnaire, designed by University of North Carolina researchers. The survey asks roughly 60 questions about things like reactivity, repetitive behavior and expressive communication -- all of which can provide hints about whether or not a child is autistic.
The parents also filled out screening questionnaires when their children turned 3.
More than 30 percent of the children believed to be at-risk for an autism spectrum disorder based on answers provided at age 1, were diagnosed with the disorder by age 3. Eighty-five percent of the children who were at-risk based on answers when they were 1, had other developmental challenges that called for evaluation or intervention by age 3.
Overall, the researchers called those results "encouraging."
"Whenever you develop a screening instrument, the two concerns are false positive and false negatives," said Steven Meyers, a professor of psychology at Roosevelt University and a Chicago-based clinical psychologist who was not a part of the new study.
"A false positive means a child is identified as at-risk for autism, but does not develop it. A false negative means a child will have autism, but the instrument did not pick it up. It offers a false sense of security."
The new study, published in the journal Autism, found very low rates of false positives associated with the First Year Inventory. There was a slightly higher rate of false negatives, but that was also relatively low, Meyers said.
The American Academy of Pediatrics recommends that all children get some form of autism screening at 18 and 24 months, or earlier if parents have particular concerns. It "strongly believes" in the importance of early and continuous screening, which can lead to early intervention.
Though there is no cure for autism spectrum disorders, which typically begin before age 3 and last a lifetime, research has shown that programs can greatly improve children's development, helping them walk, talk and interact.
The authors of the new study say that at the very least their findings could identify high-risk infants so they can study early symptoms, as well as how well early intervention programs work. If additional studies verify the new findings, the questionnaire also could be helpful in clinical settings, allowing doctors and parents to identify at-risk children at earlier ages, they say.
But even then, Meyers cautioned, the results must be kept in perspective: The questionnaire is a possible screening tool, not a diagnostic instrument. Screening tools simply alert parents and doctors to the fact that an in-depth evaluation may be necessary. Then, it is up to health-care providers to diagnose autism or another developmental difficulty.
"A screening test is always the first step," said Meyers. "It is never the last word."
"Identification of children at risk for [autism spectrum disorder] at 12 months could provide a substantial number of children and their families with access to intervention services months or years before they would otherwise receive a traditional diagnosis," study co-author Lauren Turner-Brown, a researcher with the Program for Early Autism, Research, Leadership and Service at the University of North Carolina School of Medicine said in a statement.
Nearly 700 parents completed the "First Year Inventory" questionnaire, designed by University of North Carolina researchers. The survey asks roughly 60 questions about things like reactivity, repetitive behavior and expressive communication -- all of which can provide hints about whether or not a child is autistic.
The parents also filled out screening questionnaires when their children turned 3.
More than 30 percent of the children believed to be at-risk for an autism spectrum disorder based on answers provided at age 1, were diagnosed with the disorder by age 3. Eighty-five percent of the children who were at-risk based on answers when they were 1, had other developmental challenges that called for evaluation or intervention by age 3.
Overall, the researchers called those results "encouraging."
"Whenever you develop a screening instrument, the two concerns are false positive and false negatives," said Steven Meyers, a professor of psychology at Roosevelt University and a Chicago-based clinical psychologist who was not a part of the new study.
The new study, published in the journal Autism, found very low rates of false positives associated with the First Year Inventory. There was a slightly higher rate of false negatives, but that was also relatively low, Meyers said.
The American Academy of Pediatrics recommends that all children get some form of autism screening at 18 and 24 months, or earlier if parents have particular concerns. It "strongly believes" in the importance of early and continuous screening, which can lead to early intervention.
Though there is no cure for autism spectrum disorders, which typically begin before age 3 and last a lifetime, research has shown that programs can greatly improve children's development, helping them walk, talk and interact.
The authors of the new study say that at the very least their findings could identify high-risk infants so they can study early symptoms, as well as how well early intervention programs work. If additional studies verify the new findings, the questionnaire also could be helpful in clinical settings, allowing doctors and parents to identify at-risk children at earlier ages, they say.
But even then, Meyers cautioned, the results must be kept in perspective: The questionnaire is a possible screening tool, not a diagnostic instrument. Screening tools simply alert parents and doctors to the fact that an in-depth evaluation may be necessary. Then, it is up to health-care providers to diagnose autism or another developmental difficulty.
"A screening test is always the first step," said Meyers. "It is never the last word."
7 year old NY girl saved by neighbor
This is why precautions need to be taken when you have a child with Autism who does not understand safety and danger.
Link: http://usnews.msnbc.msn.com/_news/2012/07/17/12786112-ny-bus-driver-catches-girl-7-in-three-story-plunge#.UAVaCcLT_Qg.twitter
"Please let me catch her, please let me catch her," Stephen St. Bernard, 52, recalled thinking. "That's all I could say. Let me catch the little baby."
"I think about my daughter, and you know, she's a little kid," he said.
St. Bernard, an MTA bus driver of 10 years, was returning home to Coney Island from his job at about 2 p.m. when he heard screams coming from a building courtyard.
He rushed toward the commotion and saw a girl standing on top of a third-floor window air conditioning unit. He immediately ran underneath the window.
"She just stood up there teetering, teetering," he said.
See the original story at NBCNewYork.com
Amateur video shows St. Bernard shouting up to the girl, trying to talk the girl into going back into her apartment. Suddenly, the girl falls, eliciting horrified screams from neighbors.
But St. Bernard catches her in his arms, stumbling slightly forward to the ground with the girl still firmly in his grasp.
"I picked her up and carried her, and I was holding her, rubbing her, and she just more or less kept looking around," he told NBC 4 New York. "She never closed her eyes, she didn't lose consciousness."
The girl was not wearing pants, and St. Bernard wrapped her in his MTA uniform shirt as he waited for paramedics to arrive.
She was taken to Coney Island Hospital with very minor injuries.
"He's my hero," said the girl's aunt, Monique Harding. "He definitely did our family a favor today."
Police sources said the girl has autism. Her mother was inside the apartment watching her other child and did not see the girl standing outside on the A/C, the sources said.
St. Bernard sustained a torn tendon in his shoulder but he is expected to be OK.
The girl's mother did not want to speak with reporters Monday.
More content from NBCNews.com:
Link: http://usnews.msnbc.msn.com/_news/2012/07/17/12786112-ny-bus-driver-catches-girl-7-in-three-story-plunge#.UAVaCcLT_Qg.twitter
NY bus driver catches girl, 7, in three-story plunge
Dramatic video captured a seven-year-old falling from a third-story window and being caught by a neighbor. NBC's Katy Tur reports.
By NBCNewYork.com
A city bus driver says he was thinking of his own young daughter when he rushed to catch a 7-year-old girl plunging three stories from a New York building Monday – an action caught on video."Please let me catch her, please let me catch her," Stephen St. Bernard, 52, recalled thinking. "That's all I could say. Let me catch the little baby."
"I think about my daughter, and you know, she's a little kid," he said.
St. Bernard, an MTA bus driver of 10 years, was returning home to Coney Island from his job at about 2 p.m. when he heard screams coming from a building courtyard.
He rushed toward the commotion and saw a girl standing on top of a third-floor window air conditioning unit. He immediately ran underneath the window.
See the original story at NBCNewYork.com
Amateur video shows St. Bernard shouting up to the girl, trying to talk the girl into going back into her apartment. Suddenly, the girl falls, eliciting horrified screams from neighbors.
But St. Bernard catches her in his arms, stumbling slightly forward to the ground with the girl still firmly in his grasp.
"I picked her up and carried her, and I was holding her, rubbing her, and she just more or less kept looking around," he told NBC 4 New York. "She never closed her eyes, she didn't lose consciousness."
The girl was not wearing pants, and St. Bernard wrapped her in his MTA uniform shirt as he waited for paramedics to arrive.
She was taken to Coney Island Hospital with very minor injuries.
"He's my hero," said the girl's aunt, Monique Harding. "He definitely did our family a favor today."
Police sources said the girl has autism. Her mother was inside the apartment watching her other child and did not see the girl standing outside on the A/C, the sources said.
St. Bernard sustained a torn tendon in his shoulder but he is expected to be OK.
The girl's mother did not want to speak with reporters Monday.
More content from NBCNews.com:
- Video: Bus driver catches girl, 7, in three-story plunge
- 17 hurt, four critical, in Alabama bar shooting
- Crews drag lake in search for missing young Iowa cousins
- Battle brews over Trayvon Martin memorial
- Paterno family says it will conduct own probe
Tuesday, July 10, 2012
Shifting Focus
Here is the link to a great article by Holly Robinson Peete:
http://www.huffingtonpost.com/holly-robinson-peete/shifting-focus-8-facts-ab_b_501183.html
As a Mom, it is great to have someone who is a step ahead on this journey. We can learn a lot from her as her son enters puberty and adulthood.
Shifting Focus: 8 Facts About Autism the Media Is Not Covering
Over the years many parents have reached out to me for emotional support after their child was diagnosed with autism. I particularly remember getting Jenny McCarthy's phone call shortly after her son's diagnosis. Like most moms and dads, she needed to connect with somebody who knew first hand the swift gut-kick of this difficult diagnosis, somebody who had been in the trenches for 7 years already.
We cried. We cussed. We even managed to laugh. We spoke for eight hours. She was naturally frustrated with the lack of answers about autism. I was there for her as I'd be for any parent, and I told her she was blessed to get such an early diagnosis. Her passion was palpable and I could tell she was going to grab autism by the horns, making it her mission and focus. I knew she'd help spread autism awareness like nobody else could and the media would pay attention. Since that phone call, she has created a very successful platform with her powerful opinions, blogs and books on vaccine safety, diet and recovering her son among other things. It has been a courageous, controversial and fearless ride. Miss Jenny is not scared to get in the ring with the big boys!
Though I share many of same concerns, I feel compelled to shed light on the fact that families affected by autism are struggling on multiple levels. We need a shift of focus to share the spotlight with other often overshadowed issues that profoundly impact families daily.
To that end, below I highlight 8 things about autism the media is not covering enough. They are not hot-button, provocative or headline-grabbing, but with 1 in 110 children affected by autism (and rising), these issues desperately need more attention:
1. Autism Is Unaffordable
I'd love to see more media focus on how ridiculously expensive it is to treat a child with autism. You can counsel folks all day long to get early intervention, but who in the world can pay for it? Therapies can average over $100-$150 an hour - many require up to 14 or more hours a week. With insurance companies still not covering the vast amount of therapies needed, too many families are forced to pay out of pocket for much of these expenses. A 2006 Harvard study puts the average cost of services for an individual with autism is $3.2 million over his/her lifetime! A total of $35 billion a year is spent on services for individuals with autism in the U.S. The numbers have climbed since then...
Bottom line is treatment is completely and ridiculously unaffordable and can financially bring a family to its knees... even in good times.
Families live on pins and needles with hopes that they're doing the right thing. But the fact is for too many, the things we want to do are simply out of reach financially. I can think of no worse scenario than not being able to afford to help your child.
2. Parental Guilt
So if you are blessed enough to afford it, in my experience it seems that some kids can improve tremendously with a mix of intensive behavioral, biomedical and other treatments. But the fact is so many likely will never be "recovered" and nothing, I mean nothing, makes a parent feel more guilty than thinking you could've "fixed" your kid but... well you didn't or couldn't afford to. If you have a child who is non-verbal and severely impacted by autism, for example, and all you want to hear is him speak or just use the word "no" appropriately, it can be maddening to hear that someone else did x, y or z and now their kid is no longer on the spectrum at all. So many parents have shared with me how badly they feel about this. And although I personally have broken my butt for my son and though he has overcome many challenges we were told he would not, he still has autism. What could I have done better? Oh the guilt! Don't get me wrong, I am always elated for any child's success in this journey, but it can be very hard to swallow at times-making you feel like a failure. Just one mom's opinion, keeping it real...
Alas, accepting my son's progress or lack thereof is the key to moving forward with my head up.
3. Puberty Plus Autism Can Be a Volatile Mix
Our son is almost 13 and has entered puberty. Oftentimes kids on the spectrum can start puberty prematurely, and it can be an extremely jarring experience.
A dear friend of mine and autism "Superdaddy" explains puberty's effect on autism like this: "[Puberty is] an 'oy vey' for a normal child but it can send hormones racing in a child with autism that they don't know how to deal with."
The hormonal surge can cause violent and unpredictable behavior. Stress and depression can develop accompanied by social ostracism.
Our son has suddenly regressed recently after making so much progress, bringing us a new set of challenges we hadn't anticipated. We always always remain extremely hopeful and have been blessed beyond our wildest dreams with what he has been able to overcome to this point. But puberty has been a challenge more parents need to be prepared for. It can be a completely different dynamic at this age. Let's get that out there, please.
4. Minority Children are Diagnosed with Autism Years Later Than Other Children
There are a lot of mysteries about autism. But one thing we know, according to a study covered by CNN:
5. Autism Can Be Tough on A Marriage
Autism is not a divorce mandate. Often it can bond a family tighter. But too often the financial and/or emotional toll autism can take leaves some couples feeling distanced from each other. This was the case with our marriage. My husband and I narrowly survived statistic status. But over the last 10 years I have marveled at his ability to evolve as a father and husband during this bumpy ride that he chronicled in his new book Not My Boy! A Father, A Son, and One Family's Journey with Autism (Hyperion).
I want to shamelessly plug my former NFL QB's evolved, honest account of his pain of dealing with this diagnosis. His personal revelation was that he had to adjust his expectations of his son. Our hope is that Not My Boy! will help so many dads (and moms) confront these challenges without feeling so alone. Rodney has taught me that men process things so differently. I could have been more patient and empathetic with respect to that... a book like this might have offered me that insight earlier on.
Couples digging deep to find the strength and resources to take on this fight together may be rewarded by actually connecting more deeply through this journey instead of being fractured by it.
6. Autism's Effect on Siblings
We don't see too much coverage about what the siblings of autism endure.
Ruined play dates, family outings cut short due to a brother's or sister's public meltdown, feelings of neglect, life planned exclusively around the affected child, social stigma... the list goes on.
It can be devastating for a typical child to have to grow up in such an environment. Sibs are often overlooked and really need a bit of attention; parents need tips to help the siblings cope.
I'm so hopeful this will change a bit with the release of My Brother Charlie, a new children's book co-written by my daughter and me. (We've been a busy family!) Told from a sister's perspective, in My Brother Charlie Callie acknowledges that while it hasn't always been easy for her to be Charlie's twin, she advocates lovingly for her brother, letting people know about all the cool things he can do well. I pray this book will go a long way towards fostering autism acceptance among children and mainstream schools. We found it hard to believe that there wasn't already such a book in children's libraries, considering the rising number of children on the spectrum. We are thrilled that Scholastic stepped up enthusiastically to embrace this important effort.
7. Adults Living with Autism
The face of autism is changing. Our children grow up. Understandably, every parent stresses about what will become of their child with autism in adulthood. It's my own personal recurring nightmare. We ask ourselves: How will he make it in this cruel world without me? Will he live on his own? Will he ever get married or have meaningful relationships? Who will protect his heart? Our fears in this area can consume us.
Here are a few sobering facts:
•More than 80% of adults with autism between 18 and 30 still live at home (Easter Seals)
•There is an 81% unemployment rate among adults with autism (CARD)
•78% of families are unfamiliar with agencies that could help them (CARD)
•At least 500,000 children with autism will become adults during the next decade, and they will need homes, jobs, friends and a future
The good news is many adults living with this disorder live very fulfilling lives, but too many face a variety of difficulties including anxiety, depression, anger and social isolation.
We must create meaningful respectful futures for adults with autism that include homes, jobs, recreation, friends and supportive communities. They are valuable citizens!
How glorious would it be to get more media attention on this particular issue.
And bravo to Fox Searchlight Pictures for their beautiful and enlightening film Adam, which gave great insight into what it is like for a young man with Asperger's syndrome to live and thrive on his own.
8. Autism Advocates Who Actually Have Autism:
What a concept! Rarely do you hear any stories in the media about people actually affected by autism ever weighing in on the issues surrounding it. Because people on the spectrum may seem disengaged, they hear you talking about them and can develop frustration at not being able to respond to issues that affect them. We all need to remember that...
I have had some enlightening and profound conversations with folks on the spectrum who have made it very clear that they feel completely excluded from any national autism conversation. I've had some ask me to be very mindful about my language when speaking about autism. For example, several have said to me they cringe at the word "cure." Many have expressed that they feel this was their destiny, that they were born this way so stop trying to "cure me." Whatever our views or personal agendas, we have to respect that.
Others have been frustrated by the polarizing issues disproportionately covered in the media and would prefer for us neuro-typicals to focus that energy towards trying to understand their world, how they see things. "Come into my world!" one 25 year old young man with Asperger's told me passionately.
My friend, 14-year-old Carly Fleischmann, has autism, and has taught me more about it through her expressive writings than I've learned in any book! You go, Carly!
I am also so grateful to HBO for recently airing the sensational Temple Grandin, finally giving us an image in the media of an adult with autism advocating beautifully and articulately for others like herself.
Bottom line: Their opinions should be heard, valued and included.
So here's to breaking off 8 rays of the media spotlight towards some other important autism issues. Families affected by autism deserve more than just fiery headlines; we deserve a 360 degree, multi-faceted conversation. Spread the word!
Holly Robinson Peete
Actress, Author, Proud Mom of Four
http://www.huffingtonpost.com/holly-robinson-peete/shifting-focus-8-facts-ab_b_501183.html
As a Mom, it is great to have someone who is a step ahead on this journey. We can learn a lot from her as her son enters puberty and adulthood.
Shifting Focus: 8 Facts About Autism the Media Is Not Covering
Over the years many parents have reached out to me for emotional support after their child was diagnosed with autism. I particularly remember getting Jenny McCarthy's phone call shortly after her son's diagnosis. Like most moms and dads, she needed to connect with somebody who knew first hand the swift gut-kick of this difficult diagnosis, somebody who had been in the trenches for 7 years already.
We cried. We cussed. We even managed to laugh. We spoke for eight hours. She was naturally frustrated with the lack of answers about autism. I was there for her as I'd be for any parent, and I told her she was blessed to get such an early diagnosis. Her passion was palpable and I could tell she was going to grab autism by the horns, making it her mission and focus. I knew she'd help spread autism awareness like nobody else could and the media would pay attention. Since that phone call, she has created a very successful platform with her powerful opinions, blogs and books on vaccine safety, diet and recovering her son among other things. It has been a courageous, controversial and fearless ride. Miss Jenny is not scared to get in the ring with the big boys!
Though I share many of same concerns, I feel compelled to shed light on the fact that families affected by autism are struggling on multiple levels. We need a shift of focus to share the spotlight with other often overshadowed issues that profoundly impact families daily.
To that end, below I highlight 8 things about autism the media is not covering enough. They are not hot-button, provocative or headline-grabbing, but with 1 in 110 children affected by autism (and rising), these issues desperately need more attention:
1. Autism Is Unaffordable
I'd love to see more media focus on how ridiculously expensive it is to treat a child with autism. You can counsel folks all day long to get early intervention, but who in the world can pay for it? Therapies can average over $100-$150 an hour - many require up to 14 or more hours a week. With insurance companies still not covering the vast amount of therapies needed, too many families are forced to pay out of pocket for much of these expenses. A 2006 Harvard study puts the average cost of services for an individual with autism is $3.2 million over his/her lifetime! A total of $35 billion a year is spent on services for individuals with autism in the U.S. The numbers have climbed since then...
Bottom line is treatment is completely and ridiculously unaffordable and can financially bring a family to its knees... even in good times.
Families live on pins and needles with hopes that they're doing the right thing. But the fact is for too many, the things we want to do are simply out of reach financially. I can think of no worse scenario than not being able to afford to help your child.
2. Parental Guilt
So if you are blessed enough to afford it, in my experience it seems that some kids can improve tremendously with a mix of intensive behavioral, biomedical and other treatments. But the fact is so many likely will never be "recovered" and nothing, I mean nothing, makes a parent feel more guilty than thinking you could've "fixed" your kid but... well you didn't or couldn't afford to. If you have a child who is non-verbal and severely impacted by autism, for example, and all you want to hear is him speak or just use the word "no" appropriately, it can be maddening to hear that someone else did x, y or z and now their kid is no longer on the spectrum at all. So many parents have shared with me how badly they feel about this. And although I personally have broken my butt for my son and though he has overcome many challenges we were told he would not, he still has autism. What could I have done better? Oh the guilt! Don't get me wrong, I am always elated for any child's success in this journey, but it can be very hard to swallow at times-making you feel like a failure. Just one mom's opinion, keeping it real...
Alas, accepting my son's progress or lack thereof is the key to moving forward with my head up.
3. Puberty Plus Autism Can Be a Volatile Mix
Our son is almost 13 and has entered puberty. Oftentimes kids on the spectrum can start puberty prematurely, and it can be an extremely jarring experience.
A dear friend of mine and autism "Superdaddy" explains puberty's effect on autism like this: "[Puberty is] an 'oy vey' for a normal child but it can send hormones racing in a child with autism that they don't know how to deal with."
The hormonal surge can cause violent and unpredictable behavior. Stress and depression can develop accompanied by social ostracism.
Our son has suddenly regressed recently after making so much progress, bringing us a new set of challenges we hadn't anticipated. We always always remain extremely hopeful and have been blessed beyond our wildest dreams with what he has been able to overcome to this point. But puberty has been a challenge more parents need to be prepared for. It can be a completely different dynamic at this age. Let's get that out there, please.
4. Minority Children are Diagnosed with Autism Years Later Than Other Children
There are a lot of mysteries about autism. But one thing we know, according to a study covered by CNN:
if a child is diagnosed with autism as early as 18 months of age, offering the toddler age-appropriate, effective therapy can lead to raised IQ levels and improved language skills and behavior.That's why the fact that African American, Asian and Hispanic children tend to be diagnosed much later than other children (sometimes 2-5 years later) is extremely concerning and needs more attention. One reason these children are diagnosed later is that there are more barriers for socio-economically challenged families to access information. Certain developmental milestones are ignored, unknown or overlooked. Another part of the reason is that there are some cultural and social stigmas about mental health and a fear of talking openly or seeking help for them. So the hope often is that the child will just grow out of it. We just need way more infiltration of autism information and support in minority communities, which will hopefully result in earlier diagnosis. I've visited black churches with this message letting them know they can be extremely helpful in this effort. We can't allow the window for "age-appropriate, effective therapy" to close on these kids.
5. Autism Can Be Tough on A Marriage
Autism is not a divorce mandate. Often it can bond a family tighter. But too often the financial and/or emotional toll autism can take leaves some couples feeling distanced from each other. This was the case with our marriage. My husband and I narrowly survived statistic status. But over the last 10 years I have marveled at his ability to evolve as a father and husband during this bumpy ride that he chronicled in his new book Not My Boy! A Father, A Son, and One Family's Journey with Autism (Hyperion).
I want to shamelessly plug my former NFL QB's evolved, honest account of his pain of dealing with this diagnosis. His personal revelation was that he had to adjust his expectations of his son. Our hope is that Not My Boy! will help so many dads (and moms) confront these challenges without feeling so alone. Rodney has taught me that men process things so differently. I could have been more patient and empathetic with respect to that... a book like this might have offered me that insight earlier on.
Couples digging deep to find the strength and resources to take on this fight together may be rewarded by actually connecting more deeply through this journey instead of being fractured by it.
6. Autism's Effect on Siblings
We don't see too much coverage about what the siblings of autism endure.
Ruined play dates, family outings cut short due to a brother's or sister's public meltdown, feelings of neglect, life planned exclusively around the affected child, social stigma... the list goes on.
It can be devastating for a typical child to have to grow up in such an environment. Sibs are often overlooked and really need a bit of attention; parents need tips to help the siblings cope.
I'm so hopeful this will change a bit with the release of My Brother Charlie, a new children's book co-written by my daughter and me. (We've been a busy family!) Told from a sister's perspective, in My Brother Charlie Callie acknowledges that while it hasn't always been easy for her to be Charlie's twin, she advocates lovingly for her brother, letting people know about all the cool things he can do well. I pray this book will go a long way towards fostering autism acceptance among children and mainstream schools. We found it hard to believe that there wasn't already such a book in children's libraries, considering the rising number of children on the spectrum. We are thrilled that Scholastic stepped up enthusiastically to embrace this important effort.
7. Adults Living with Autism
The face of autism is changing. Our children grow up. Understandably, every parent stresses about what will become of their child with autism in adulthood. It's my own personal recurring nightmare. We ask ourselves: How will he make it in this cruel world without me? Will he live on his own? Will he ever get married or have meaningful relationships? Who will protect his heart? Our fears in this area can consume us.
Here are a few sobering facts:
•More than 80% of adults with autism between 18 and 30 still live at home (Easter Seals)
•There is an 81% unemployment rate among adults with autism (CARD)
•78% of families are unfamiliar with agencies that could help them (CARD)
•At least 500,000 children with autism will become adults during the next decade, and they will need homes, jobs, friends and a future
The good news is many adults living with this disorder live very fulfilling lives, but too many face a variety of difficulties including anxiety, depression, anger and social isolation.
We must create meaningful respectful futures for adults with autism that include homes, jobs, recreation, friends and supportive communities. They are valuable citizens!
How glorious would it be to get more media attention on this particular issue.
And bravo to Fox Searchlight Pictures for their beautiful and enlightening film Adam, which gave great insight into what it is like for a young man with Asperger's syndrome to live and thrive on his own.
8. Autism Advocates Who Actually Have Autism:
What a concept! Rarely do you hear any stories in the media about people actually affected by autism ever weighing in on the issues surrounding it. Because people on the spectrum may seem disengaged, they hear you talking about them and can develop frustration at not being able to respond to issues that affect them. We all need to remember that...
I have had some enlightening and profound conversations with folks on the spectrum who have made it very clear that they feel completely excluded from any national autism conversation. I've had some ask me to be very mindful about my language when speaking about autism. For example, several have said to me they cringe at the word "cure." Many have expressed that they feel this was their destiny, that they were born this way so stop trying to "cure me." Whatever our views or personal agendas, we have to respect that.
Others have been frustrated by the polarizing issues disproportionately covered in the media and would prefer for us neuro-typicals to focus that energy towards trying to understand their world, how they see things. "Come into my world!" one 25 year old young man with Asperger's told me passionately.
My friend, 14-year-old Carly Fleischmann, has autism, and has taught me more about it through her expressive writings than I've learned in any book! You go, Carly!
I am also so grateful to HBO for recently airing the sensational Temple Grandin, finally giving us an image in the media of an adult with autism advocating beautifully and articulately for others like herself.
Bottom line: Their opinions should be heard, valued and included.
So here's to breaking off 8 rays of the media spotlight towards some other important autism issues. Families affected by autism deserve more than just fiery headlines; we deserve a 360 degree, multi-faceted conversation. Spread the word!
Holly Robinson Peete
Actress, Author, Proud Mom of Four
Friday, July 6, 2012
Dr. Joe
Looks like I am doomed to the couch for yet another night. Dr. Joe comes to check on me every once in a while, to make sure my heating pad is on red, and then he rubs and kisses my belly. He is now prescribing me a "healthy dinner" of apples, carrots, grapes, fruit loops, and meatballs.
Wednesday, July 4, 2012
The art of getting dressed
I woke up to a snuggly boy, crawling in between me and Bryan. "Mama, are we going anywhere today?" I said, "No." He promptly replied "Yay!" and went about his business.
About 2 hours later, as the time approached noon, I heard a little voice from upstairs yell down, "I need pants." I told him he could find some in his drawer or downstairs in the dryer. "Is it ok to wear pajamas?" I told him yes and he disappeared back into his room.
A little while later, he came down and I started to giggle. I quickly stopped, as I didn't want him to think that I was laughing at his choice in clothes. He had on a size 4 Lego Star Wars red pajama top and size 4 or 5 Cars blue pajama pants. I told him that the outfit was perfect for 4th of July. He even pointed it out some of the white in the explosions on the shirt.
Every summer, he grows by leaps and bounds. So proud of him!
About 2 hours later, as the time approached noon, I heard a little voice from upstairs yell down, "I need pants." I told him he could find some in his drawer or downstairs in the dryer. "Is it ok to wear pajamas?" I told him yes and he disappeared back into his room.
A little while later, he came down and I started to giggle. I quickly stopped, as I didn't want him to think that I was laughing at his choice in clothes. He had on a size 4 Lego Star Wars red pajama top and size 4 or 5 Cars blue pajama pants. I told him that the outfit was perfect for 4th of July. He even pointed it out some of the white in the explosions on the shirt.
Every summer, he grows by leaps and bounds. So proud of him!
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