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CNN autism family report

February 4, 2009 AmeliaJake 6 Comments

I hesitate to remark on this – this article on CNN.com about a family with an uncontrollable autistic tantrum-throwing child (age 13) who has supposedly been tremendously helped by a five-day $20,000 (provided gratis) intervention. The family is no longer in “chaos”. I hope this is true, but I doubt it. I’m not going to analyze the article, other than to point out a telling paragraph :

That’s just what the Bilsons are doing: One step at a time. They have increased the amount of time that Marissa has to practice her new behavior, from a starting time of 20 minutes a day toward a goal of 60 minutes.

The reason I have a problem with this article is that it tells people who do not live with children who are incredibly disruptive that it is easy to correct the situation. I speak from experience: THAT IS ABSOLUTE . . . excuse me for straying from AJ speak . . . BULLSHIT.

With all due respect to my middle grandson, who is now 14, tons of time, money, hospitalizations and therapies have not altered his behavior in a way it is possible for his brother and sister to have friends over. I can’t understand it; it does not make sense. It does not respond to any “this is in your best interest” argument. I know he did not ask to be like this, but gosh o’mighty, it is hard to live with him.

I cringe at thinking of parents now who are going to have to deal with the old “Oh, you just need rules and behavior modification” and you’ll be fine. BULLSHIT. I guess I’m angry here. First parents have to deal with this type of condition in a child and now they will have people thinking they just aren’t handling it correctly.

It can get bad, very bad. Tantrums, violence, the refusal to use the bathroom – #1 and #2. Yes, I’m sorry; it’s indelicate, I know . . . but it happens. It is real for some families.

6 thoughts on “CNN autism family report”

pottermom says:

February 4, 2009 at 2:54 pm

I always hate when the newest expert on the block shows up and starts saying… “if you only do this then the problem will be solved…” and it seems that each year brings a new expert. And none of them know diddly about the subject when it comes right down to it.
I find it irritating that these experts, in the process of trying to convince you of their “rightness”, totally make you out to be a slime-ball parent for doing what you have been doing (which often is just hanging on).

Almost worse though are the well meaning “friends” who have all the answers (although they don’t have any of the issues, they are strictly outsiders).

Each child is different. Each one reacts differently. What works for one doesn’t work for another. Parents though need to know that they are doing the best simply by doing what they can. They don’t need to be made to feel that they are bad parents or that the answer is “easy” when it isn’t. If you notice though, many of the experts have no personal experience. They see kids in clinic, in trials. They do not live with them 24 hours a day. Huge difference.

I’m with you on the irritation level of things like this. Although we have not been touched by autism in our family I have dealt with my share of “well-meaning idiots” (oops, friends) who have all the answers for a medical condition we do have in the family. Because they read it somewhere it must be true…. try living with it folks THEN you can talk to me.
Susanne says:

February 4, 2009 at 9:46 pm

Pottermom, the directors of Autism Partnership are not exactly “the newest experts on the block.” They have been working in the field of autism for over 30 years. If you search through the psychology literature (you can do so at pubmed.com) you will find their names appearing in more than one reputable journal.
And no, they may not have children with autism at home, but I think it’s clear they know their stuff. There is a reason it is unethical for doctors to treat their own family members. They would not be effective clinicians if they had that bias.
FYI, there is a response posted on their blog:
http://www.autismpartnership.blogspot.com/
AmeliaJake says:

February 5, 2009 at 9:04 am

Pottermom, I want to thank you for your words of understanding. You can see your comment prompted another response. I approved the comment so the content could be viewed, but I want you to know I wish it had been expressed in a less edgy tone.
pottermom says:

February 5, 2009 at 9:19 am

Well knock me over with a feather. Seems my generic “newest expert on the block” and “well meaning friends” seemed to be read as “the directors of Autism Research” when I don’t believe I ever mentioned them. My point was support for the parents who are often made to feel like they are failures when they are doing their best. I suppose my ire is more for the “well-meaning friends” than the clinicians. Those well-meaning friends truly stand on the outside and judge…..
But then as usual my wording is less than grand and clear as mud so it’s natural that a little of that goo climbs out of my post and smacks me in the face. I’ll live with it. Mud makes a lovely beauty mask.
AmeliaJake says:

February 5, 2009 at 12:42 pm

PM
I thought your point was clear and well-expressed; do not sell yourself short.
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***Jody Lynn Vance: 1985-2011***

Jody was born at sunrise on a bright, sunny, cold, snowy Groundhog’s Day and from Day One she was a gift to everyone around her. Her infectious laugh and rambunctious spirit made her the center of attention where ever she happened to be.

She and her Dad would watch Sesame Street and sing at the top of our voices (and quite out of key) all of the songs. She enjoyed having Mom fix her hair so it was fancy and just right.

As a toddler she had quite an impressive vocabulary and often had a lot to say. One time Dad was headed out the door to go to work and she pointed her finger and said, “No. No. No. Don’t go anywhere!“

Jody was very seldom crabby, always happy and she wasted no time in spreading that joy to everyone around her. Jody’s favorite place was to be perched on the lap of Mom or Dad or playing with her toys spread out all over the floor. Jody was always affectionate, wanting hugs and “moochies” as she called smooches on the cheek.

At around two, Jody’s illness began to attack her. It took a beautiful, innocent child and put her through untold pain and suffering,

I know that through all of that she was not afraid. She had the heart and spirit of lion. She never gave up; time after countless time, she would open her eyes and there would come that smile. Jody lost her speech, but never was at a loss for words. She could say more with a look or a half smile than most people do yakking all day long.

After numerous doctor, hospital, and specialist visits, we were given the news of her illness. I remember that moment frozen in time … it was as if the entire world stopped. It was in that brief moment we both knew that we must make the very most of the time we had remaining together and not dwell on the despair of all of the things that would never be.

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Joe and Sam did without a lot of things that other kids had, did and took for granted … and they never once complained or were resentful of the way things were. That shows a special kind of love and a special kind of family.

As the years went by and the boys grew up into strong and healthy, Jody’s health slowly and steadily declined. She would have long stretches where she was fairly stable and then would become so very ill.

Many times we were sure the end was near and then she would open those sparkling blue eyes and stretch just like nothing had happened at all.

Once she was in the hospital with her usual bout of pneumonia and lapsed into a coma; this went on for 8 days. One Dr. came in, examined her and just shook his head. Later that night Jody’s eyes popped open and she was refreshed from her cat- nap.

People over the years have commented, ”I don’t know how you do it. ”This always struck me as odd. My thoughts would always be: How could you even think of turning your back on someone who needs you that much?

It was always our promise to Jody that she would always live at home with her family and I think she found comfort in knowing that.

But, no one person can take the credit for caring for this wonderful young woman. It has taken an army of doctors, nurses, teachers, aides, pharmacists, friends, and family over the years to maintain Jody at home, and we could never begin to thank you enough.

Jody always kept her head held high and never seemed to be afraid; she has truly been my inspiration on many occasions. When things were gloomy and seemed hopeless, just one smile and a hug was all I needed to go on. Jody will always be my hero. I love her and will treasure the time we had together.

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6 thoughts on “CNN autism family report”

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