New to group

December 14, 2007

Hi,

I am and live in Gainesville, Florida with my husband, sons, dog, cat and

snake. (14) has Down Syndrome and was diagnosed with PDD at age 7. His

brother is Jonah, 9 - completely in love with his brother except the times he

gets on his nerves...and my husband, Les. Jake goes to a center school where he

is known by everyone and is a " big fish " . He is on the basketball team, a member

of the monthly drum circle, went to last year's prom with a date, etc. We are

generally pleased with the school as most of the teachers are invested in their

students' progress and are warm and compassionate spirits. Our classroom teacher

has a " contract " with our local CARD (Center for Autism and Related

Disabilities) expert who visits with her once a month in the classroom and will

visit whenever we need her.

Sometimes I forget that Jake has Down Syndrome as the Autism part is always at

the forefront of our challenges. is funny (very funny), is communicating

better all of the time...tells us about most things but speaks in three word

sentences and is generally quiet most of he time. He has a " droning " sound when

he is self-stimming mostly when he is in the " playroom " playing with his trucks.

He can be very loud when he is playing/stimming and has occasional incidents of

almost psychotic-like behavior when he seems difficult to reach....we are trying

Depakote now to see if he has been having subclinical seizures -- not much

change except that now he sleeps completely through the night! We are still new

to the medication, however and are hopeful we will even see more progress. Our

list of interventions over the last 14 years is quite extensive (from

gluten-free/casein free to homeopathic meds to inclusion to homeschooling to

hippotherapy to ABA, etc.- but very little has changed.

Jake is an amazing person who attracts so many people to him. Our guests for

Christmas eve are an elderly couple who are virtual strangers but who fell in

love with Jake at our supermarket who we have seen over the years (only at the

market) but who light up every opportunity they have to see him. He is the

" king " of the extended family as he was the first grandchild but also shares his

light in such a way that others are truly warmed by him.'

I look forward to hearing about other families and their lives, challenges and

successes and hope to see some similarities with my son's experience of being in

the world.

Thiele

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