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OT: Happy news on the family front

I've talked with some of you about my youngest son who has a genetic disorder called Tuberous Sclerosis (which causes any and all of the following: mental retardation, epilepsy, autism, tumors in the brain, eyes, heart, lungs and kidneys and on the skin and all kinds of behavior issues. TSC affects people in a HUGE variety of ways -- with some individuals severly impaired and some very mildly affected. (learn more here:

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Ryan is 21 and is mentally retarded (although quite high functioning), has a history of seizures (seizure free for 10 years) and is on meds for ADHD and Mania. He shows a handful of autism spectrum behaviors as well. When he was little -- his behavior was scary to say the least. Ryan finished high school but didn't graduate. He reads at the 3rd - 4th grade level and math is a real challenge. He loves music (lives with headphones on ), video games, drawing and movies. He is really a neat kid!!

Ryan attends the local adult transition program and works 12 - 15 hours a week at Krogers sweeping and bringing in carts. He currently lives at home.... So now you know him...

here is our GOOD NEWS!!!!!

Ryan passed the written test and has a Michigan driving permit!!! I am so excited for him. Assuming that he will eventually (may take a year or two -- but hey... so what!!) get his real license -- it will absolutely change his life! Those of you who know and work with kids like Ryan know how big of a deal this is!

So if you are driving around southeast Michigan... watch out... Ryan may be behind the wheel!!! LOL

Kate in MI

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Reply to
Kate G.
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Congratulations to both you and Ryan, Kate! :)

Reply to
Sandy

Reply to
Taria

Woo hoo! Give him a hug from me - if he'll let you! :)

Reply to
Kate XXXXXX

Well done Ryan!!!! Congratulations

Reply to
Sharon Harper

Kate, I worked with disabled adults in SC for 13 years and Yes, I know how hard this must have been for him. Congratulations to you and Ryan both! Barbara in FL

Reply to
Bobbie Sews Moore

That's awesome Kate! Give Ryan a great big hug for and me a 'well done'!

Reply to
Debi Matlack

What a ghastly website. Loads of GIVE US MONEY stuff, but if you want some straight info about the condition you have to click on umpteen links and get spoon-fed dumbed-down trivia in dribs and drabs. Like so many medical-info resources on the web, you would be MUCH better off using a library with real books made of paper.

Lots about how to raise money for them, but what do they DO with it? I don't see any links about financial assistance with treatment or research grants. The UK equivalent

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is far better designed, with easy-to-find useful documents, and they do say where their money goes.

I once worked in a mental hospital (long-stay dump, basically) where we had a couple of patients with the most severe forms of it (more often called "epiloia" at the time) - severely retarded, mute and autistic. They looked quite distinctive; it was 25 years before I saw anybody else with the same condition, and then I saw two on the same day (but in much better shape, as they were getting around town fairly normally) - one was on a bus across the street, it's that obvious.

The point is, any medical text that covers the condition will have photos of that stereotypical form of the illness, but there's nothing like that on this website. (The DermNet NZ and patient.co.uk sites are a lot more informative on this aspect, also pointing out that the facial lesions are treatable, which I would think anybody who had it would want to know as soon as possible).

============== j-c ====== @ ====== purr . demon . co . uk ============== Jack Campin: 11 Third St, Newtongrange EH22 4PU, Scotland | tel 0131 660 4760 for CD-ROMs and free | fax 0870 0554 975 stuff: Scottish music, food intolerance, & Mac logic fonts | mob 07800 739 557

Reply to
Jack Campin - bogus address

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