Special Needs Children

[InLove]

May Love surround you and your family, Abogado. My grandson will be eleven this summer. He is the eldest of three children and his mother (my daughter) is 28 and finds herself raising them all on her own. He is intelligent and loving, but extreme ADHD has had such an effect on his life and the way people react to him. No one can seem to find the right medicines for him, and recently he spent time in a diagnostic facility because the doctors strongly believed he was bi-polar. Ultimately, they decided he was not, but his behavior still seems to indicate it. So his mother is looking into the situation further. It has been a struggle for my grandson, his mother, and his siblings for years.

Yes, he is treated differently at school, but he still has friends, and caring educators (not always, but often.) Sometimes people (especially older adults) do not understand his problem, and so they do not understand how to interact with him. But I know that the love of his family is very important to him, and I know he really depends on this security. Guess what he likes to talk with me about? He loves to talk about God--he is quite a budding theologian, and has no limits or preconceptions. It's great.

God bless you and yours, and I lift you up to Love's warm light.

InPeace,
InLove

[Abogado del Diablo]

Here's an update on my son.

In July of last year we went back to a casein free/gluten free diet, started him on a type of treatment for heavy metal poisoning called chelation and begin administering bi-weekly injections of a supplement called methylcobalamin (methyl-B12). When he was evaluated at baseline on the Childhood Autism Rating Scale ("CARS") he scored a 38, which is on milder side of "moderately autistic."

Baseline labwork showed no abnormal metal levels. However, after 3 months of chelation, he began showing higher and higher levels of mercury and lead in his blood. After 10 months the levels went back to normal and stayed that way. We discontinued the chelation because it appeared to have done its job.

Autism is often accompanied by severe gastrointestinal problems (and was with our son). Recent research indicates that certain autistic kids, particularly those with GI dysfunction, may actually be suffering from a breakdown in a key pathway for cellular metabolism (folate-dependent methylation). A side effect of this is the reduction in the production of an essential amino acid called glutathione. Reduced glutathione is associated with gut lesions and oxidative stress in cells. It is also a key to the body's defense against toxic heavy metals. In short, it appears from recently published scientific research that some autistic kids suffer from sluggish methylation (inherited) which makes them particularly susceptible to heavy metal poisoning. This is known as an "efflux disorder" - an inherited deficiency in the body's ability to bind and excrete certain toxins so that even tiny doses can have disastrous effects. In this case, it was mercury and lead.

Our son was such a kid. By giving him the methyl-B12, we have stabilized his glutathione production and completely eliminated his GI problems. The chelation helped reduce his body burden of toxic mercury and lead.

And here's the good news. At his most recent evaluation he was scored at 32 on the CARS. Under 30 is considered non-autistic. He has COMPLETELY recovered his joint attention and capacity for emotional attachment, and mostly recovered his ability to learn by socialization and immitation. He is still speech-delayed (though he does great with sign language) and will need some time and therapy to catch up to other kids his age in that and a few other areas. According to his developmental pediatrician, if he begins to catch up on speech and a couple of coping behaviors, he will be well below 30 and no longer considered autistic.

To appreciate this, consider that when that last picture was taken (the one above from Christmas 2004) he was near catatonic and the only reason he was even sort of looking toward the camera is because my wife was spinning a toy he was fixated on behind and to the side of me. He almost completely lived in his own world and would look right through you as if you weren't even there. And now we have him back.

Here's a picture of him with his mom from the Waipio Valley, Hawaii taken about six weeks ago:

[lunamoth]

This is a wonderful progress report Abogado. I'm so happy for your family, for your son. It reminds me I need to get in touch with a friend back in Missouri who was trying nutritional approaches and considering chelation therapy for her autistic daughter.

Thank for the photo update: He's adorable. Best wishes to your family.

luna

[seattlegal]

I'm so happy for you and your family!

[wil]

Awesome.

[flowperson]

May G-d continue to bless you and your family.

flow....

[amellcheney]

My daughter was a special needs child. she was 2'2oz at birth and had so many problems. She was born with very low vision, profound hearing loss with lead to speech problems, a heart defect (fixed at 6 surgeries)lung problems, motor skill and cognitive problems. She was introduced to early intervention at about 6 months, started wearing coke bottle glasses at 9 months. At about a year she had many ear surgeries, at 15 months her lungs collapsed so every year without fail until she was 18 0r 19 she would get pneumonia. She did not grow even close to normal size until she was 5 or 6. she had to be fed through her stomach until she was 8 months.
I became very outspoken about her care and treatment. Mindy did not have a specific named birth disorder per Se just with all she had made it rough for her.
Mindy was a very sweet loving child. she will always wear strong glasses, still has some hearing problems, lung problems.
Once Mindy learned to walk and talk and grow she became a social butterfly and rebel.
Having had a special child taught me to be very tolerant of other kids except the ones that are plain spoiled brats. She taught me to sit on the floor and play for hours, she taught me that nothing is more important then the time you spend with them, how to let dinner be late, and so what if there were dirty dishes in the sink. She taught me to love in a way I never thought possible. The only way Mindy would walk was if I held this silly pink ribbon on one end and she held on the other end. If we went shopping or something like that I would tie that ribbon on her wrist to keep her from wandering. When she was learning to walk she only saw shadows and at that time she was unable to hear making a simple outing dangerous.
I was standing in line at a store one time and this stupid woman behind us said that they should not let the retards out in public and for the first time in my life I could have strangled that woman.
The one thing I can tell you is be patient, love that baby, and to be the best advocate you can be.

[Sunny C.]

My youngest girl has some developmental delays. This is very worrisome to my wife and me. She went to a special pre-school this last year, and she'll be attending a special kindergarten next year. It's especially hard because no one can measure and tell us what's really going on, or offer any kind of prognosis. We just hope, and hope things work out. That's all we've got. That and a determination to gut it out whatever comes.

I don't like talking about this stuff. I immediately feel guilty because of all the kids and parents who are so much worse off than we are.

[Quahom1]

Originally Posted by amellcheney

I was standing in line at a store one time and this stupid woman behind us said that they should not let the retards out in public and for the first time in my life I could have strangled that woman.
The one thing I can tell you is be patient, love that baby, and to be the best advocate you can be.

I think I'd have done it for you, had I been in line. better yet, I probably would have publicly pointed out what an uncouth "moron" she was, and when God said He was handing out "Brains", she thought He said "Rain" and ran for cover...

I had a family member who was considered an "idiot/savant". She too was quite precocious, and strong willed. What she lacked in basic motor skills and articulated speech, she more than made up for in photographic memory, and
the ability to play anything she heard once, on the piano, without error. Her sense of humor was also quite "wry". (lol)

Unfortunately her body could not keep up with life, and she passed on at 21.

But what a treasure, that one...and a joy to have around.

I guess "judge a book not by its cover", is to be taken to heart.

v/r

Q