Need more advice and thanks...

August 29, 2009

Thanks for the welcome, Irma, and thanks to those who shared information

with me about services from the County and school in your area for

DS/ASD. There is no special pre-school where we live in France and the

one in Geneva nearby is full, but we hope to move on up the waiting

list...We're not sure we'll qualify for an aide (we are in process of

applying) since the USA isn't a tax-paying country in the EU. Aides are

apparently assigned from the unemployment pool in France - no training -

so we have dim hopes there anyway.

Our son, , is 3 years old...since I see so many seasoned parents

here and can tell this is an honest, encouraging group, I'll step out on

a limb with some questions and frustrations I am having...maybe you can

relate?

For starters, a lot of books about Down syndrome haven't really helped me

so far and now I see why - because of the Autism piece. Also, books I am

picking up about Autism don't seem very encouraging either since the

authors often don't include any perspective from a dual diagnosis. We

just sent a urine and hair sample to Great Plains Lab in Kansas to see

what the biomedical component is - I'm convinced something is wrong

there. We switched Ben to GF/CF diet on July 1 and have him drinking

Rice milk with calcium, but (sorry about the details here), he has poop

like soup with undigested food in it! Worse than before...So, here's my

first question:

1) Did any of you see a noticeable change for the better when you

implemented a GF/CF diet? We're testing Ben for celiac disease too (he

was still GF/CF when he gave the blood, however, so maybe it won't be

legit?) Did any of your children have problems with Rice milk? Any

advice there?

2) Have you seen any improvement through therapy intervention? I keep

hearing about ABA (applied behavioral analysis) and DIR (floor time)-

don't know how we'd possibly do either of these the apparent recommended

20-30 hours per week out here in France with an 8-month-old and a

graduate student income!

3) For your DS/ASD son/daughter: how have you adjusted your hopes over

time and how have you been pleasantly surprised? This is the greatest

blow to me. I could handle the DS diagnosis but the Autism piece feels

overwhelming.

4) Any decent books out there on dual diagnosis (DS/ASD)?

As ever, thanks for your insight,

Kathy Dudero in France

____________________________________________________________

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August 29, 2009

First: I hear sounds of stress and panic in your email. The world and your

son will not fall apart if you do not do the most aggressive possible

treatment discussed in this world. There are a few very public people whose

names I WILL NOT USE who believe that ASD is curable. PErsonally I think

that is hogwash. But we can learn to live with it and accomodate our

child's differences. And most aggressive doesn't always mean best. Being

part of a functioning, sane family is also important.

Preschool: how about a small private preschool? Our son was in a

neighborhood day program half day with typical kids until we returned to the

states when he was just over 3. No- he wasn't walking or talking at that

point. But still he went every day and practiced the rituals of young

children world over -separating from Mom, circle time, story time, sharing,

listening to music, learning nonsense rhymes, etc.

Let's start with the GF/CF diet. IF he is on that diet, the tests for

Celiac will be inaccurate. After all, the autoimmune factors will not be

showing since he is not having to protect his body from alien food! I

believe the usual recommendation is 3 weeks of normal diet before testing -

but that may be different in Europe.

As to rice milk. I started all the babies I cared for who had DS and or gut

issues on GOATS' milk. Much easier to digest. Much better absorption thus

much less loose stools.

We used a modified floortime for our son who was 10 yo before he was dx, but

we had been doing floortime without knowing it for years. Considering the

attention span of our child, an hour a day a broken into 15 minute segments

was all he handled as a toddler and up to about age 5. We tried adding

extra five minutes when we could but it was tough. To stay on key while we

did work, I used a timer for my sake, but gradually he learned to listen for

the timer to sign ALL DONE! We also used PECS and a schedule. These are

still very important to our son functioning as well as he does. Prediction

and schedules reduce stress.

Sign was the most important thing our son learned as an infant and toddler

since he didn't talk more than one or two words until he was past 6.

Pleasantly surprised that the manic youngster I had at ages 10-19 has turned

into a fairly well mannered young man. He still has meltdowns, but mostly

he freezes and turns off the world rather than destroying it as he did when

he was younger.

My SOLE reading on this dual dx was Glen Vatters self-published book. Maybe

it is in the archives for this list?? I know that Dr. Capone has written on

the topic. Mostly I now read info on ASD to understand the issues of autism

which are much more important to our life than the DS ever was. -

>

> Thanks for the welcome, Irma, and thanks to those who shared information

> with me about services from the County and school in your area for

> DS/ASD. There is no special pre-school where we live in France and the

> one in Geneva nearby is full, but we hope to move on up the waiting

> list...We're not sure we'll qualify for an aide (we are in process of

> applying) since the USA isn't a tax-paying country in the EU. Aides are

> apparently assigned from the unemployment pool in France - no training -

> so we have dim hopes there anyway.

>

> Our son, , is 3 years old...since I see so many seasoned parents

> here and can tell this is an honest, encouraging group, I'll step out on

> a limb with some questions and frustrations I am having...maybe you can

> relate?

>

> For starters, a lot of books about Down syndrome haven't really helped me

> so far and now I see why - because of the Autism piece. Also, books I am

> picking up about Autism don't seem very encouraging either since the

> authors often don't include any perspective from a dual diagnosis. We

> just sent a urine and hair sample to Great Plains Lab in Kansas to see

> what the biomedical component is - I'm convinced something is wrong

> there. We switched Ben to GF/CF diet on July 1 and have him drinking

> Rice milk with calcium, but (sorry about the details here), he has poop

> like soup with undigested food in it! Worse than before...So, here's my

> first question:

>

> 1) Did any of you see a noticeable change for the better when you

> implemented a GF/CF diet? We're testing Ben for celiac disease too (he

> was still GF/CF when he gave the blood, however, so maybe it won't be

> legit?) Did any of your children have problems with Rice milk? Any

> advice there?

>

> 2) Have you seen any improvement through therapy intervention? I keep

> hearing about ABA (applied behavioral analysis) and DIR (floor time)-

> don't know how we'd possibly do either of these the apparent recommended

> 20-30 hours per week out here in France with an 8-month-old and a

> graduate student income!

>

> 3) For your DS/ASD son/daughter: how have you adjusted your hopes over

> time and how have you been pleasantly surprised? This is the greatest

> blow to me. I could handle the DS diagnosis but the Autism piece feels

> overwhelming.

>

> 4) Any decent books out there on dual diagnosis (DS/ASD)?

>

> As ever, thanks for your insight,

> Kathy Dudero in France

> __________________________________________________________

> Online Medical Insurance

> Get free online medical insurance quotes and save more money today.

>

http://thirdpartyoffers.juno.com/TGL2141/c?cp=xO8CPV24IjpatHY39wOhUAAAJ1BG0lyW1F\

S-pTXnD9BMPncQAAQAAAAFAAAAAJqZGT4AAAAAAAAAAAAAAAAAElA1AAAAAA==

>

August 29, 2009

Hi Kathy,

My first piece of advice is don't overwhelm yourself. You don't need to rush

into anything. Took me months of grieving the autism diagnosis, before I began

to feel okay.

I love to read. I'm trying to remember the few books I've found that are useful.

Giggle Time was great. I'll look for the author. Truthfully though, I searched

for books but this email list beats any book by a mile (or kilometre).

We don't do any special diet, unless you count chocolate ice cream almost daily.

My take is that Darwyn (age 5) never seemed to have celiac or Crohns or tummy

upsets so he's not really likely to benefit from diet changes. Also it would

drive me nuts. Every once in a while I feel I should try it but if I wait long

enough the feeling passes.

Take a chance with any aide you can get. Our best babysitter had no training but

just felt comfortable with Darwyn and he loves her. Took a bit of time at first,

but now when she visits he takes MY hand, walks me to the front door and waves

good bye! Also Dar's sister plays great games with him. As your youngest gets

older have fun with physical games like pretending the bed is a boat and

wrapping up in blankets for a storm and rolling around. There's a book with

sensory games that might be good. If you make it fun your kids can have a great

relationship. loves her brother to bits and he loves her too.

Also my sister, Nash, lives in Geneva. Alas her 2 kids are just

typical toddlers, but she understands the DS/ASD thing and has some Signing Time

DVDs you could borrow (not easy to find overseas). Darwyn LOVES them and they

are great for learning signs. Let me know if you want her phone number/email.

Hope this is helpful. We lived in Switzerland 7 years ago. Still miss the entire

aisle of chocolate at Migros and the hazelnut yoghurt, but now we're in

, Canada.

Nash