I love being a part of the Autism Hub...it was one of my quests in life, so to speak.
Today, I was checking on the blogs and new blog writings. I was a bit taken back
that a blog member was on here...I had never noticed her being part of the Autism
Hub before.
Heck, who am I to say who can be part of the blog...but 4 years ago, a wonderful story
was written about my family...here is what one Autism Hub blog member wrote about us
4 years ago...
Lady, I Like My Cigar, Too, But Sometimes I Take It Out of My Mouth
Okay, so that headline was rude. I admit to it. But Groucho certainly had a point when he so aptly commented on one woman's prodigious reproductive skill. And I think there is a point here as well.First, a disclaimer. My heart goes out to this family. I am parenting two underage children, of which 50% are autistic, and it is hard. I simply cannot imagine how somebody - even a well-partnered and supported somebody - could survive with 5 autistic children (and one NT to spare).My question is WHY KEEP GOING? I understand that having only one child who is disabled is no reason not to try for another. But each time, they tried and "lost the statistics battle". I understand that "whoopses" happen. And I understand that they were pregnant with one when a second was diagnosed. But still... Maybe it is my personal prejudice against overpopulating the planet in general...combined with my first hand knowledge of what it is taking to get things in order for just ONE autistic child. *Shaking head*...I just don't understand. I simply hope that the resources truly are available, in both quality and quantity, to make these children's lives happy and healthy ones.AUTISTIC CONJECTURE OF THE DAYOne Family's Struggle With Autism - The Genetic FactorAug. 16, 2005 — Jeanette and Patrick O'Donnell were overjoyed by the arrival of their firstborn daughter, Caitlin Carole. But 2 1/2 years later, their baby girl still wasn't speaking. Then the O'Donnells received a frightening diagnosis: Caitlin was autistic. The O'Donnells thought that if the condition was genetic, they wouldn't have anymore children. But they say that doctors assured them autism was not passed down from the parents' genes. The young couple resumed their dream of having a big family. Along came Dierdre, Erin and Meaghan. They were a happy family, but then Erin stopped talking. Once again, doctors made the painful diagnosis: autism. "By the time Erin was diagnosed, we already had four [children]," Patrick said. And by that point, Jeanette was pregnant with their son, Patrick. Then the O'Donnells got an unplanned surprise, and little Kiernan came along. Each Child Affected DifferentlyOne by one, the O'Donnells were given the same dreaded diagnosis. All told, the they have six children under their roof in Austin, Texas. Five of them fall on the spectrum of disorders called autism — Meaghan is the only child who does not. Today, research shows a strong genetic component is at work with the disease. An estimated 1.5 million people suffer from autism, which the Autism Society of America describes as "a complex developmental disability that affects an individual in the areas of social interaction and communication." Autism affects each person differently and some have more severe complications than others. The O'Donnell children mirror the many distinct forms this complex disorder takes. Dr. David Amaral, of the MIND Institute in Sacramento, Calif., says that studying these differences could change the way doctors treat autism. "The benefit to the kids and to families will be that we'll be able to predict what will be the best treatment for a particular type of autism. Currently, we can't do that," he said. Caitlin, 14, and Kiernan, 4, the eldest and youngest, are the bookends of the O'Donnell family encyclopedia of autism. They display hallmarks of the condition — they walk on their toes, their bodies rock, arms flap, they often screech. Both are profoundly disturbed by certain environmental changes. Amaral said if you asked the children why they were upset or frightened by certain situations, they wouldn't have any insight into it. On the other end of the spectrum are Erin, 8, and Little Pat, 5, who can describe what they are feeling. Pat will hide his eyes from strangers, but says he does so because "he's nervous." Both Erin and Pat made dramatic turnarounds. "When I was about 3 years old, on my second day of school I started to speak," Erin said. But they still have strong reactions to sensory stimulation. While Erin is soothed by bubbles on her skin, Pat is terrorized by running water. And then there is Dierdre, the "quirky" one. She has a form of autism called Asperger's Syndrome. People with Asperger's will become obsessed with one particular subject. "They'll go on talking about a topic of interest to them and not take any cues from you that you're not interested," Amaral said. "You still have at the core this deficit of social function." Jeanette said it's painful for Dierdre to sit with the family and eat dinner. She prefers to eat alone, one item at a time. Children That Fit in the FamilyNo two O'Donnell children has an identical set of symptoms, but they all share one defining characteristic — a failure to have appropriate social interactions. All of the O'Donnell children have speech challenges, avoid eye contact and display little facial emotion. "It's not that they can't have any expression of emotion or attachment, it's just that it's very different," Amaral said. Today, all the children except Kiernan attend regular school; Caitlin is helped in school by an attendant. The O'Donnells say patience and a sense of humor get them through. "We laugh," Patrick said. "We have to laugh. If we don't laugh, we wouldn't be ourselves." And they have conviction that their children matter. "I'm very proud of what our children have accomplished," Patrick said. With their five distinct personalities, the O'Donnell children are a unique bridge to help researchers learn more about the mysterious world of autism. And each in their own singular way, they bring love and joy to a very special family. "We have children that are unique," Jeanette says. "We have children that fit in our family."
// posted by Susan @ 11:56 PM 0 comments
I commented then about my reaction to a mother of a child with Autism commenting on my family and how ashamed I was then...my post was not published. I posted again today, when I realized that this mother was now a Hub member....
I shall wait and see what is allowed to be posted on the same blog post I tried to post to 4 years ago.....
We all are trying to raise our children...when we become judgmental..it changes us......
My children were all supposed to be here..for that I am thankful. Because someone does
not believe in having alot of children for whatever reason, don't judge. Heck, I could mention
how being a single parent is very selfish for a child...don't they deserve a father ( I really don't believe this, but there are many who do)....
Do you see where I am going? Please people...think before you hit the ENTER key.
About Me
- Mom26children
- I am the proud mother of 6 children. 5 of our children have autism. We do not feel our world has ended, but just begun. We do not chelate, intervene biochemically, give shots of any kind, practice ABA, etc. We treat them as we treat any humanbeing. We treat them with kindness and respect and expect the same from them. They are exceptional children.
Thursday, June 19, 2008
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8 comments:
Wow. That's harsh. I don't think folks realize that they have no business discussing other people's reproductive lives. Yeah, it's hard. But I think you are doing a great job.
I have to say, I got this reaction from family members who think I am stopping at two because my kids are autistic. Has nothing to do with it, as a matter of fact. I'm stopping because I have horrible, dangerous birth complications. I desperately want to add to our family and am not afraid to have another autistic child. Been there, done that. Bought the tee shirt.
Wow- I wonder what people have written about me?!?
If I read that right, her kids are 50% autistic? What's the other 50%? ;)
Not to condone what Susan wrote in that entry (which I also find pretty harsh), but to set the record straight, she is not a new addition to the Hub; in fact she was one of the very first members.
Thanks Dave,
I stand corrected...but, hey, that makes it even worse to me.
I remember reading the blog when it was posted and was really taken aback that a mother with a child with Autism would even began to criticize us..
Funny thing, I get most of my criticisms from Autism Mother's...go figure.
Hope all is well.
Jeanette
wow, I am shocked too a little. I think though, that it's not her problem, so why should she comment. I used to sort be on her side, I only had one. We found out pretty early that he had Autism, and we made a conscious effort not to have more because at the time I knew he was all I could handle. YOu know the old saying God only gives you what you can handle, well, apparantly God feels you can handle a lot! Susan and I, not so much! lol I think that says a lot about you huh?
There's a certain type of person who is compelled to question anyone's reproductive choices, autism or not. I've got triplets, and the number of perfect strangers who have felt the need to share with me their views on my fertility (in public) over the years never ceases to amaze me. It only got worse after it became obvious that all 3 were autistic- I've always wondered how to answer people who asked why we didn't stop at one or insult our kids/choices in public. Most of the time it just rolls off my back, but it does get a bit disheartening after a while.
Hang in there!
Jeanette
Seems uncalled for, indeed.
Lillian
It never ceases to amaze me that people feel free to be critical of women who choose to have more than their predetermined appropriate number (usually 1 or 2) of children. I recently had someone ask me in front of a bunch of other women (one of whom was unable to have biological children at all) after discovering I was six months into my fourth pregnancy (now halfway through my seventh month), "Why on earth would you want to have more children?" In my head I said, "Why the blood hell not?" Out loud I said, "Why not?" She only had two children and couldn't fathom why anyone wouldn't do the same thing she did. I don't think she knows that some of my kids are autistic so she seems to just have a general prejudice against repeat childbearing.
I don't think people realise how much they devalue the lives of people when they take such an attitude.
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