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  #21 (permalink)  
Old 03-28-2005, 01:21 PM
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I have read through all the posts up to this point and want to respond to a few of them.

First of all, "Bluebird" and others, have you read "Dangerous Grains"? It is regarding sensitivity to gluten-containing grains, such as wheat, rye, barley, and possibly oats. While the author's science appears somewhat shaky at times to me, if his theory is to be believed, intolerance to gluten and its relatives is at least one possible factor (and he thinks it's the major one) in several of the problems you list, including autoimmune disorders (such as JRA, diabetes, etc.). One of the most interesting comments in his book was that he feels that the most frequent presenting symptom for celiac disease or other gluten intolerance (I can't remember which and I had to take the book back to the library but either is usually considered purely physical) is depression. (I don't know about the bipolar aspects, but have to wonder if a gluten-free diet might help with that also. For some kids, a gluten- and casein-free diet (casein is the protein in milk) does wonders.

Kimmer, be careful about getting your son's diagnosis changed, at least if you mean medical diagnosis and not just educational eligibility for special education services. Once the diagnosis "autism" appears on someone's chart, from what I understand getting physical services is difficult for anything related to this (physical or occupational therapy, for example), because it's seen as a mental health diagnosis, even though more and more practitioners are realizing that various physical issues that have been associated with it for years and explained as "of course he has/does that, he's autistic" are treatable and in many instances relate to the "psychological" symptoms people with autism exhibit. The bigger issue, however, is not being able to get health insurance at all if you switch insurances or when he is an adult, as from what I understand that is one of the diagnoses that no insurance company will touch unless they have to. Think very carefully about the repercussions of doing this before pursuing this.

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  #22 (permalink)  
Old 03-28-2005, 02:16 PM
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Good point on the food allergies. My dd has many food allergies. We are hoping with the immune suppresive therapy she is on, it will help her food allergies too. As for ds, I know when he eats 'junky' carbs, white flour noodles, breads, ect... that sets him off. He craves them, which is a sign of a allergy too. Potatoes don't bother him. Processed white flour items do. When I use the whole wheat products, like pasta, we don't have a problem.

What are the signs of ADD? I am looking at my ten y o and wondering.... he was complaining today about not being able to concentrate on his school. I think I will call the doctor that my 19 y o son and dh see for thier bi polar.
Don't stay were you are tolerated, go where you are celebrated!
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  #23 (permalink)  
Old 03-29-2005, 08:09 AM
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Join Date: Jan 2003
Location: southeastern CT
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what are your sources of support?

Good morning once again ~

I replied to this post earlier on and am coming back for a revisit to explore the topic a little bit further, as I see others have also done.

One of the things I found, in dealing with some difficult issues, was that my son's diagnosis/behaviors affected the entire family.

My choice was to hook up with a support group, as well as engaging in some systems level learning and advocacy - I figured that if I understood better how the "system" functions, it would be less scarey to navigate.

The support group is for families who have a child with special mental health needs. I found that I could learn in that venue, too. The group I affiliate is proactive; while we take time to cover personal issues, we also are encouraged to look at children's mental health on a global basis.

I am curious to know how others keep things going, over time? I think it is important to ally with support even when there is no current crisis.
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  #24 (permalink)  
Old 03-29-2005, 08:23 AM
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Support Groups

The support groups I attend help keep me sain and gives me other parents who understand what we are going through. I get valuable advice, hints and strategy that they have learned the hard way and are more than willing to share. My ADHD support group is lead by a Pschyologist who volunteers her time, she Is EXCELLENT and she has ADHD also so she knows. My Special Needs group is lead by a "Special Needs Professional". We are even planning trips together so that our kids will have kids with the same issues around. We also have lots of fun, we always try to focus on the positive and I feel so much better, most nights I come away glad that my son is doing much better than at least one other child there. It really is something you all need to locate, if you do not find one in your area think about starting one. We are debating on whether or not to join the CHADD (national- ADHD support group or not). It is rather expensive but probally well worth it,our group is free and a local organization even provides free child care and refreshments. We get to leave the kids to someone else while we get our mind, body and spirit requvinated. At our last meeting we had a spa, stress relieve session. Boy was it RELAXING. They showed us ways we could treat ourselves and take time for ourselves so we could deal with the everyday issues much easier and calmer.

My ADVICE IS TO JOIN ONE TODAY!!!! I promise you will not be sorry!!!
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  #25 (permalink)  
Old 03-29-2005, 01:08 PM
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Gee I really wish there was a group like yours somewhere around where I lived, it sounds wonderful. We joined CHADD for awhile and my DH even set up their web page and ran that for them for awhile but it was such a long drive from our house that the trips just got to be to much conflict. Every week it was something different like she didn't want to wear her seat belt or she would have to go to the bathroom 4 or 5 times or she would just choose something to argue with the boys over. If we had a closer place we would go again.

Today has actually been a pretty good day for us, she got a lot of her school work caught up and has been very agreeable with her dad and I. I love the days like today when she is my little angel.

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  #26 (permalink)  
Old 03-29-2005, 07:50 PM
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Lightbulb Welcome To Holland

Welcome to Holland
c1987 by Emily Perl Kingsley all rights reserved

I am often asked to describe the experience of raising a child with a disability-to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip- -to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo. David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say./What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy> All my life I've dreamed of going to Italy!"

But there's been a change in the flight plan.They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting filthy place, full of pestilence, famine and disease.It's just a different place.

So you mustyou must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around... and you begin to notice thatHolland has windmills...and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was suppossed to go. That's what I had planned."

And the pain of that will never, ever,ever, ever go away...because the loss of that dream is a very very significant loss.

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.
there is no death; only a changing of worlds.
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  #27 (permalink)  
Old 03-29-2005, 08:00 PM
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I found this in Dear Abby about a year ago. It touched me so that I put it in a frame with my son's picture. Even your best friend probably cannot begin to understand how you feel, how you struggle with decisions. Not knowing if you've made the right decision. Dealing with the sometimes VERY obvious dissapproval of people you've never seen before & will never see again, & even if you did know them, it's still none of their business!
That's where the support of kindred souls comes in. Thank you everyone that has posted, or just read and lifted up a prayer for thoose of us that have such precious, special children.
there is no death; only a changing of worlds.
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  #28 (permalink)  
Old 03-30-2005, 07:45 AM
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Ds's doctor called last night. His Lexapro level is too high in his blood. He will be taking 500 mg instead of 1000 mg. The doctor thinks this is why ds has been acting so ..... strange. That sounds better than acting stupid. LOL Maybe things will calm down with him.
Don't stay were you are tolerated, go where you are celebrated!
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  #29 (permalink)  
Old 04-01-2005, 07:44 PM
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That essay was just beautiful. Thank you for sharing it.. it touched me deeply.

For years, I "was in Italy", and then one night I woke up and realized that somehow I was mysteriously transported to "Holland"..

It takes some getting used to.. but the "tulips" are indeed precious.

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  #30 (permalink)  
Old 04-02-2005, 11:46 AM
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Susan Thanks I will have more questions for my doctor when I take David back to him. He will let me know what he can and find out what he doesn't know for me.

According to our state special education laws. If you are classified in any autism classifications. Any services that the parents want can not be denided. Right now David does receive OT/PT but I still feel that he needs speech at least once a week but the school disagrees with me. I am asking for a new speech test this year during his tri-annual testing.
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