The Iallonardi family.
Managing Editor's Note: Our contributing editor Katie Wright wrote a post
Katie Wright and her sons.
for the Katie Couric talkshow which airs today and features autism. It seems that the children/people with autism chosen to appear on camera do not represent many of our readers' own children. Katie Wright does a great job of pointing out the vast differences under the name "autism" in her blog entry that is on the Couric site (see below.) Also, our friend Michele Iallonardi herself Mom to three beautiful boys, 2 with autism and 1 who is recovered, has a blog entry that also presents a written juxtapostion to what viewers will see.
You might recall Michele from the movie Autism Every Day, which came out many years ago. She is also in the new movie United States of Autism. Michelle is always a strong voice for families - and a realistic voice of the day to day challenges we face. Check your local listings for air time.
By Katie Wright
Watching the boys and adults affected with autism tape the Katie episode about autism was so inspiring to me. These are amazing, articulate, gifted and artistic young men. I loved hearing everything they had to say and learning how their parents dedicated their lives to facilitating their child’s success.
Christian cannot be interviewed on talk shows because he cannot speak.
As I was watching the show, however, I couldn’t help but be reminded of the huge disparity that makes up the autism spectrum. My son lives on the other side, the severely affected side of the spectrum. I am so proud of my 11-year-old son Christian – no one works harder (my opinion as his Mom!). However, Christian is not a savant, not a professor, not an artist, but just a typical kid struggling with severe autism. He was toilet-trained at age nine and needs 24-hour-a-day supervision because he has no awareness of danger. More to the point, Christian cannot be interviewed on talk shows because he cannot speak.
When people discover my son is severely affected they often ask if he received early intervention. Yes! So to all those parents who did the same, you are not alone! We spent our entire savings on the best intervention possible. The problem was that his untreated biological issues made cognitive progress impossible for many years. I believe this is because he has “total body” autism, not a behavioral disorder. Additionally, kids like mine have complicated gastrointestinal and immunological problems, which is, unfortunately, fairly common... Read the full post at Katie Couric's site.
By Michele Iallonardi
As a parent of a child with autism, I am always interested in hearing about the experiences of others in my shoes. Very often, the stories that most people know about are those who have made amazing strides and had incredible success despite their disability. As a Board Member of the Nassau/Suffolk Chapter of the Autism Society of America, I have met hundreds of families affected by autism, and I know firsthand the struggles that they face each day. As my son gets older, I have thought more about how the world perceives children with autism who are severely affected. When I look at my own son, my friend’s children, and many of the children in our autism community, our stories are very different than the ones who usually garner the most attention. I worry constantly about their future.
What I fear is that people will think that our children are not enough. That we are not doing enough. It concerns me that the world will judge us even more, and that people will think, “Well, if the parents had tried xyz, then maybe their child would be able to talk/play/work, etc.” I fear that the world will not accept my son as he is — a sweet, beautiful, loving boy – who is also significantly affected by autism.
Jackson is almost 12-years-old. He still wears pull ups at night. He speaks very few words, and is only understood by those who know him. Jackson stills likes it when you sing the ABCs or Twinkle Twinkle Little Star. He wants to be picked up all the time and carried around like a toddler and he does not understand that he might be too big for some people to lift. He loves to squeeze your neck so tight, when he is happy or sad, and he doesn’t know his own strength. Jackson would never intentionally hurt you, and he doesn’t even notice or understand when he does. My sweet boy needs to be watched every single minute of every single day in order to keep him safe. At 12-years-old, he will still need help to eat, wash, and use the bathroom. There is not a single thing that he can do alone. Read the full post at the Katie Couric site.