FREEPER FAMILY TABLE--The Challenged Family

me | March 11, 2005 | grellis

[grellis]

We all face challenges of one kind or another but today we'll specifically discuss family members with physical or developmental challenges: Autism, Down's Syndrome, Asperger's, Alzheimer's, et al. We have wildly differring opinions on more controversial diagnoses--specifically ADD/ADHD. I'm requesting in advance that we all be nice. Please post links to support groups or informational webpages if you have any. Share with us your ups, your downs, how your "normal" (for lack of a better word) children interact with your challenged child, or anything else you'd like to discuss.

Coffee's on!

[grellis]

Good morning, ladies!

[grellis]

Good morning, gentlemen!

[grellis]

I'm later than usual in "setting the table"--I had to shovel.

[Tax-chick]

I'm afraid I can't contribute much today - we have just the usual "challenges."

[grellis]

All three of my boys have tubes in their ears--run of the mill kind of problem, but not without its difficulties. I have written nearly $1000 worth of checks so far this year in medical expenses. David is having surgery this coming Ides to have the tubes replaced in both of his ears. Poor thing can't hear at all and doesn't speak above a whisper.

I guess its a good thing that my new waitressing gig is working out okay--even with health insurance (BCBS) we're paying out quite a bit.

[sarasota]

I have an Asperger's daughter, age 22. Didn't get a diagnosis until age 17.5, so from birth to then I didn't have a clue what was going on. Since then I've become her strongest advocate and having had to jump through high school hoops, then on to help from local services like DORS (Dept. of Rehab Services), Center for Independent Living, Center for Communicative Disorders and a therapist who specializes in families with kids on the autistic spectrum. Bottom line: get a diagnosis as early as possible, learn as much from reading and support groups online and in person and focus on your child's strengths. These are special needs kids with an emphasis on "special".

[Gabz]

Shovelling??????????/ Still?

You poor thing.

[Gabz]

I'm in the same boat as you.

[Tax-chick]

Medical bills - ouch. Josie is growth hormone deficient, but we're finally almost done that. (Maybe totally done, after the next endocrinologist visit in April.) Billy has a heart murmur and hyperactivity. Tom is on the fuzzy edge of "autism spectrum."

We just lump it all together under "stuff of life."

[grellis]

I know very little about Asperger's, apart from its being in the spectrum of autism. How is it diagnosed? What are treatments? I know a few other FReepers have family members with Asperger's so I imagine there is a lot of info available right on the forum.

BTW--if any of you have a ping list (or know of a ping list) specifically for challenged families, call 'em up!

[grellis]

Shovelling??????????

I looked at the ten-day forecast last night...it ain't good.

[eccentric]

I claim 8 children: 4 step, 3 birth, one guardianship. ONLY numbers 6 and 7 were on speaking terms with me when they were 16. I'm still waiting, and dreading number 8 to get to that age.

When I told someone that 50% of my kids dropped out of highschool and the first five all had babies one the way before marriage, he said he would nominate he for "Mother of the Year."

Cats are more fun. Same mess, less stress.

[eccentric]

1982, my year-old son, who later had tubes in his ears, had sleep apnea. His tonsils were so large they actually stopped his breathing for moments. No baby monitors then, docs told me not to worry about it! He survived....

[sarasota]

Generally speaking, Aspergers kids are on the high-end of the autistic spectrum meaning that they tend to have higher I.Q's and more potential for learning. Trouble is, they lack instinctive behaviors and need help "scripting" prior to social events and other real world experiences. They can't "face read" or understand body language without coaching, tend to focus on one or two "obsessions" which consumes their interest (movies, history, clocks, etc.). Things like that. I've got the best book ever written (I think) called The Everything Guide to Parents with Aspergers Children and I wish I had it with me to list other traits but a search engine will enlighten anyone interested.

Diagnosis is easy if you find someone who specializes in kids on the autistic spectrum. The doc we had diagnosed my daughter with a questionnaire in 15 minutes. Treatments vary but it's important to get special ed help throughout school, even though some parents resist because they don't want to stigmatize their child.

Raising an AS child is totally difference from a "normal" one, so much so that I've become more like her than my other daughter who doesn't seem to "get" either of us! I've learned to love her for who she is, not for who I think she should be. She's opened me to a whole new world of love and understanding--and patience.

[Gabz]

I truly feel for you..........ours isn't too peachy either, but I don't believe it will be anything more problematic than more rain. Of course with the ground so saturated right now, that is problematic in and of itself.

[wisconsinconservative]

We had the same thing with our youngest. Tonsils so large they touched-about the size of very large grapes. He also developed asthma when he was 2 making breathing that much more difficult,especially when he had a cold. His pediatrician was of the wait and see variety so I took him right to a ENT guy who took one look and said those gotta come out. He had them out the day after his 3rd b-day. He weighed 26 lbs before surgery and 2 weeks later he had already gained 8 lbs.

7 years later it looks as though he may be growing out of the asthma!

[sarasota]

Ping

[backinthefold]

As most of you know, my 13 yr old son has Aspergers. There is so much on the net to help out with this syndrome, here is a link with FAQ's about it, and how it relates to Autism

 

http://maapservices.org/

 

(sorry, haven't figured out how to do that thing where a link just looks like click here)

 

Hitting puberty has been awful for him, but we are dealing with it as best as possible.

 

Grellis, you asked how he was diagnosed. When he was about 1 1/2 yrs old, I knew something was wrong. He was not walking, not talking other than just saying the same word over and over again- nuga- and he was unable to parallel play. We thought it was because of chronic ear infections he had, luckily, I had a wonderful doctor who listened to me when I said, "he looks right through me like I am not even there" we got him to a child psychologist, and he diagnosed Pervasive Developmental Disorder... at age 2.5. When he was 9 he was reclassified as Aspergers.

 

Sarasota, I have no problems with him at school, he gets great grades... he has no friends...

 

[sarasota]

My daughter's school mates just let my daughter keep to herself but at least they weren't rude to her as far I as know. She's had one friend her entire life, another girl on the spectrum who since left the area. Never had a date either. As one of her mentors told me, I am her "life partner" and I've assumed that role in trying to help her find ways to become more social. Going to a clinic for communicative disorders at a local college has help enormously over the last three years. She works with students from the department who have structured her dialogue so she knows what to say. I know it sounds strange, but she needs a script--and once she has it, she knows what to say.