new to the group

[Guest guest]

Hello, everyone!

We are also new to the group. We have a 6 1/2 year old son, who was

diagnosed in April (officially) by Dr. Capone in Baltimore. We live in

Omaha, NE and kept hearing " he's too social " , even though he kept losing

skills, increasing self-stim to a manic level, etc., and lost all speech and

ways to communicate. Luckily, one of the 5 psyches we saw did teach us

discreet trial and PECS. Christian's speech regressed to 3-6 month level!

We knew before we went that Christian was ds-asd, but after hearing it, it

was still sad; the hardest part was hearing that he will probably never

speak (he has alot of frontal lobe damage-happened in utero-no one knows

why). We found that if we went by Iowa's standards, instead of NE's, he

would've been dx. years earlier-how frustrating. He finally gets direct

speech with his new dx. and more services, so it has been worth it. Dr.

Capone felt like Christian was probably autistic from birth- lots

headbanging, self-stim, SIB, and echolalia, which we didn't realize was

" echolalia " at the time.

We have 3 other children- -4 and temperamental, ph, 2 and sweet,

and , 5mo. and an angel! Thank God or we would be nuts. We read an

article in Newsweek about autistic kids that says that 75% of them are

institutionalized by age 13; my husband thinks in the other 25% of the

cases, the parents are institutionalized!LOL!!

This summer we hired an educational psychology student to come help work

with Christian 6 hours a day (also for the baby's safety and my sanity!);

he made great progress (for him) and is now on Phase 2 of PECS and is

signing 40 words, learned 1-2-3, colors and shapes. It seems like so

little, but is alot for him. It has been helpful to read all of your advice

and creative ideas and to realize that some of you can also relate to a very

low functioning child. Christian now " speaks " an occasional word, so we

aren't giving up all hope that he will talk, even if it's echo...

Christian has ground his teeth to nothing; we met with Lashno,in

Baltimore, and she was very helpful; brought her ideas to our OT and they

showed us some oral motor programs- now we might hear grinding 1-2x a week;

didn't realize how crazy it was making me until it stopped!

Dental appt and haircuts were awful, until someone suggested wrapping him in

an oversized bath towel for procedures. Now even blood draws go smoothly

with just me holding him in his bath towel- an amazing difference. It used

to take 5 of us to hold him down! We get alot of our ideas from a friend

whose child has ds, but nephew has autism- Christian fits more in to the

autism group than anything, but there is no group available in our area

right now, because most people moved out of town for better services

elsewhere!

Christian's feet have always turned in and we use shoe inserts called

" paddybobs " , which we get from our PT; she is trying to order them directly

from the company ($30.00) vs. $160.00/pr if you go through an orthopedist.

We've never seen an orthopedist, because all of my friends who took their ds

kids were told " it's just ds and poor muscle tone " . The shoe inserts do

help him keep his ankles straight when he's walking, so at least there are

fewer spills. He does the death drop alot and drives us crazy on family

outings!

It's been interesting to read about all the meds- we never knew there were

so many choices. We just started Respiridol in June and it worked great for

6 weeks; now he's gained alot of weight on it and it's not as effective,

but they don't want to increase it because of weight gain at this time...but

at least he sleeps most nights and focuses better during the day, so it's

still working some.

Glad to finally " make the time " and meet you all!

Take Care

Jackie

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