Article in the Philadelphia Inquirer

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Registered: 04-01-2003
Article in the Philadelphia Inquirer
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Wed, 04-19-2006 - 12:32pm

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Registered: 02-24-2004
Wed, 04-19-2006 - 12:53pm

Thanks for sharing!!

michelle

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Registered: 02-20-2001
Wed, 04-19-2006 - 1:05pm
I read this on Monday and it was interesting, but the first thing this always makes me wonder is am I doign enough and who the heck could I afford to do what these parents are doing.

 


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Registered: 01-16-2006
Wed, 04-19-2006 - 2:40pm
This was a great and encouraging article but does anyone else get frustrated reading these 'success' stories? I mean DD (3 -Pdd-Nos) has been in early intervention for a year now and has made wonderful improvement and lately has been improving by leaps and bounds butI can't help but feel these stories get parents hopes up, which i suppose they are supposed to do, but don't offer much guidance etc.. for children who can't afford $150K worth of additional therapy or to have rooms in their houses converted to therapy centers etc,....YKWIM? I guess stories like this just make me scared.... I want to read about successful and happy families who children weren't "suddenly misdiagnosed etc..." because for a lot of us, that is or will be our reality. Am I crazy???
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Registered: 03-26-2003
Wed, 04-19-2006 - 4:48pm

You are not crazy. I feel the same way so often. Mike continues to struggle and fall behind further and I don't know why and it is very frustrating. Particularly when I see a few other kids I know personally who are those success stories. I think did I do something wrong? The news likes to tell the success stories, but it doesn't tell the whole story at all.

First, as far as therapies and money. I recently read an article in the ASA newsletter about autism over the life of a child. If you have a membership to the ASA, you can get the article online. It was called the natural history of autism or something like that. Bascially, it talks about how back even in its beginning with autism some kids just made progress. That often kids particularly on the higher end of the spectrum went through a pattern of improvement. This was prior to early intervention and most autism treatments. Does this mean that early intervention or treatments aren't useful, no I don't think so. But what it does begin to tell us is that it may not be the be all and end all of treatment. How much money you put into therapy is not going to determine neccessarily how much recovery a child has. Sure having all the best may help, but often no one knows which one helps what. We try to teach our kids the same skills you teach kids who are NT but do it in a way that they can learn. I think we have to break it down one need at a time and address that need.

I figure it is like regular parenting. Sure we would all like to send our kids to the best private schools, have the best private piano lessons, camps, private tutors, vacations in france. But most of us send our kids to public school, town rec programs, and take them to the movies. We have to live within our means and focus on having a happy family and raising our kids to be hardworking, independent, happy adults.

I don't buy that boy is now typical. Sorry, but I have been there once and learned my lesson the hard way. Cait was basically "recovered" at about 5-6. In fact, around her 6th birthday I asked her doctor about removing the ASD diagnosis. She was significantly delayed in preschool. My pediatrician is very wise. She said she would only remove the diagnosis if Cait could go a full year without any supports and succeed. She didn't and she is a very typical aspie nearly 12yo still in special education.

We just do our best and don't expect the media to accurately portray our lives or even autism because I don't think there is one way to portray it.

It is nice to see coverage. It is nice to see the improvements those boys have made. It is nice to see with ASD's kids can make improvements and adults can lead very fullfilling lives even if they are a bit different from the norm.

Renee

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Registered: 02-20-2001
Wed, 04-19-2006 - 4:52pm
You know I read somewhere about Doug Flutie and Dan Marino.

 


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Registered: 08-26-2005
Thu, 04-20-2006 - 1:46am
I too always wonder if I'm doing enough when I hear these stories. The first thing I think of is let's try the GFCF diet and naybe I should start supplements. It's frustrating sometimes to hear stories like that because on one hand it makes you hope but I honestly think there is no magic cure!
Teresa
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Registered: 01-19-2005
Thu, 04-20-2006 - 12:52pm

Hi Renee,

As usual, I think your insights are very wise. Although I understand where those parents are coming from, we do a mix of traditional and alternative therapies.

But I was thinking to myself, they've hired 6 therapists. I AM MY SON'S 6 THERAPISTS! (Although he does get four 30 minute sessions private ST/OT per week, but we do most ourself at home.) They have a remodeled therapy/play room. MY LIVING ROOM, KITCHEN, BACK YARD, WHOLE HOUSE are our "therapy room." There is a mini-tramp in the middle of my living room. Not great interior decor, but whaddya gonna do?

Guess I am a little jealous of that couple, like you said, we all wish for the best for their kids. I wish I had the $$$ to do more. But I also agree with that ASA article you cited. Eric is adopted and has 2 sibs with ASD. One had no early intervention, and speaks fine now although he did have echolalia and all the signs as a young boy. Now he comes off as more ADHD. The other was diagnosed at age 5 and got into therapy right away, is in a very good school program, but is much more affected. My Eric, was diagnosed very early, did have early intervention, and although doing great, has more OCD/stimmming problems than his older birth-sib. It is a puzzle still.

I also agree about the "recovery" issue. I know this is a touchy subject. I see the videos of "recovered" kids and I want to hope too. But in my heart I know our kids will always be wired a little bit differently, though they can do great things with that unique way of experiencing the world. This is something I actually do not want to change about Eric. I heard a DAN doc speak recently. Someone asked him if he had "recovered" any kids. He said, "NO. But if you asked me have I improved the quality of life for some kids and made the difference between them being able to function in every day situations or needing constant care, I will tell you, yes. In that way I have made a difference."

I found that to be a really honest answer.

I did really find the Inquirer article to be fascinating though. Thanks, LR for posting it. I found it very interesting that a doctor was pursuing alternative therapy with his children.

BTW, on a side note. My son gets his therapy at the Dan Marino Center. I will always be so grateful to the Marinos for using their money to help people like us. The Center is really great, the Marino Foundation here offers financial help. If it weren't for the Marino family, there would be so little services here.

Sorry to be so long-winded. Guess I got carried away!

Katherine

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Registered: 04-01-2003
Thu, 04-20-2006 - 4:01pm

I hear what you guys are saying - we can't all go into treating our kids with the end result we most look forward to being a CURE. I do believe that some children DO become neurotypical after treatments, but these cases are probably not par for the course. I feel that ASD is most often a medical problem(s) and treatments most often have SOME affect.

So I will say this: We have found the Magic Bullet for one of our twins.

Ever since we began the supplements + GFCF diet, he has been a DIFFERENT KID. I am not kidding. At first we thought we were just imagining him to be better. We thought we were overstating when we would tell people how calm he's been, so much more interactive, so much more eye contact!

Well, we WERE seeing changes, and that was confirmed when 3 weeks into supplementing (we had been doing the diet for a month by the time we started supp'ing), his special ed teacher called. I know many of you heard this story when I fanatically posted it a few weeks ago ! ;) But she was in awe - she asked what we had been doing differntly at home, b/c what she was seeing at school was "a miracle."

She has called again since then, about a week ago, still in shock over his newly gained appropriateness in all areas, academic and social. Could this all be a coincidence? Maybe, but she's worked with him for almost 2 yrs, and he has never even had one day the way she is describing to be, and has been for the last 4 weeks or so.

He has been affected by the treatments we are administring under our DAN Dr, there is no question. And when he has his blood and urine analyses done again we are expecting to see these dramatic improvements reflected in those lab tests, where before he was showing abnormal levels of MANY markers that are very common in ASD children.

Don't give up hope feeling that your child can not become healthier - if you go into treatments just hoping for their guts to heal, and their various biological abnormalities (found thru lab tests) to become more healthy, then you can be *pleasantly surprised* if these gains are also seen in your child's behaviors & ability to cope more easily...

Meg

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Registered: 03-26-2003
Thu, 04-20-2006 - 10:21pm

Doug Fluties son is very severe. In fact I have read that he may actually be CDD (childhood degenerative disorder). He lived here in San Diego for a bit and was involved around here. There was even radio comercials for cars where he mentioned his son in them. Something about the safety of the car. It was obvious from his remarks as well as video there have been of Dougie often shown during april that he is quite affected.

Dan Marino's son was on TV last year during that big NBC autism week. There is still the link for the spot online. He appeared very typical in many ways. It did say he was still in special education classes but the boy did very well on TV and looked like a typical teen.

Renee

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Registered: 03-26-2003
Thu, 04-20-2006 - 10:30pm

I am really glad to hear your sons progress. That is positively wonderful and I hope he continues to grow and improve.

There is definite progress. My kids do grow and improve in many ways. In fact, when my daughter was 4 I never dreamed she would have come as far as she has. It still amazes me to this day. A girl I never thought would ask a "wh" question (sound familiar Amy?) or have a conversation with me, and she is quite a lady now. So much fun in so many ways, but her brain is still autistic and that doesn't have to be a horrible thing any more. She isn't "recovered" because she still needs so many supports to be able to function normally, but she is in mainstream classes with a B-C average. She has hobbies. She has friends. She has definite talents.

However, with my son unfortunately I have had the rug pulled out of me a few times when I became hopeful. When something really seemed to be working then the floor would fall out from under me when it stopped. I guess we haven't found that thing yet. Now if he starts to do well my phrase is "cautiously optomistic" that we actually are going to have some real progress but I still remain aware for those things that pull that rug out from under us.

Renee

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