Re: Thank You/ My concerns- LONG

December 4, 2001

In a message dated 12/4/01 9:26:14 AM Eastern Standard Time,

p_houser37@... writes:

> Sometimes when she is alone she will start laughing at nothing. She will

> gigggle for a few minutes and it is so cute but I can't figure out what she

> finds so funny.

>

Hi Pam,

Madison (8, DS and autism) does all the things you mentioned (and more),

but this one she does and I love it!!! She almost looks like she's

envisioning something hilarious!!

I have to say that your cutie does sound like DS/asd to me. Course,

*I'm* not a professional. One of the things that Dr. Capone did when Maddie

was being tested that was very helpful, was to actually do the forms with us.

He asked the question and then we would have a discussion about Maddie and

if that particular question applied and how. It was so useful in answering

because there's so much that can be missed when you are living with your

child. Maddie scored WELL into the range for autism on her tests (one mark

I didn't want her to get a high grade on.....;-). The onset of her autism

started at age 2 and was very abrupt. Her autism was quite blatant (still

is) and anyone who ever met her never doubted the dual dx. It's not always

that clear with most kids and in a way, I feel glad because we didn't have to

deal with non-believers.

Where did you say you were going to have her tested? You need to read

Joan's D/S issue on DS/ASD and gather as much information as you can on the

dual dx and bring it with you on your visit. You will need it for her

school as well. The DS/aut listserv site has TONS of information for you to

sift through.

Having Maddie tested and then dx'd has been brought many emotions: being

scared, nervous, sad, relieved, validated....Lots of things. But the most

important thing that it has brought to us is a better education for her.

Had she not been dx'd, I honestly dont' know where she'd be going to school

right now!!!

Good luck to you Pam!! We ALL know exactly what you are going through and

what it feels like. We're here to help, support and listen in every way!!

{{{{{{{{{{hugs}}}}}}}}}}]

Donna

December 4, 2001

Hi Pam,

It's really great that Hannah is very verbal. Some kids with autism are

and many aren't. A lot of the behaviors you described about your darling

daughter Hannah, can be attributed to autism. My son, Brook, 11 years, has a

lot of the same types of behaviors that you described. When he was little he

pulled a lot of hair. We did get behavior therapy for him on 3 different

occasions and it really helped. Brook also likes to spin or twirl objects, he

doesn't play with other children including his brother and sister and doesn't

like to be touched either. He will tolerate some hugs and kisses, mostly on

his terms. He approaches us for a quick hug. Going to the dentist or getting

a haircut are absolute torture for him. Brook is better about letting us

brush his teeth now, but it has been an ongoing struggle for years. By the

way, we use a special toothbrush that you can order called the Collis Curve.

It makes it easier to do a good job with the limited amount of time you have

in their mouth.

Changing routines can be very difficult for him and very upsetting. He

also is easily overwhelmed by crowds or dinner parties and loud noises are

very upsetting. He also loves spraying water everywhere and throwing things

all over the place. Brook also avoids eye contact and prefers to look out of

the corners of his eyes even though his vision is fine. He is not yet toilet

trained, but does poop in the toilet everyday before his bath. Yeah!! Brook

twirls his arms around like windmills when he gets excited. His development

has been very slow, but he has really improved in a lot of ways. He is

starting to talk and we are very pleased with how he is doing in school

lately.

I hope this answered some of your questions about your concerns. I think

you are in the right place,welcome to the group!

Marisa

Mom to Miles 14, Brook 11 and Genevieve 4

December 4, 2001

Hi Pam,

Sorry about the name mix up.It must be great for you now that is

walking. Brook was very late in walking. He was 3 years and 8 months old and

we had been going to physical therapy twice a week since he was 2 1/2 years

old. My back was in really bad shape. He was kind of a big guy back then

since he was on Depakote which has the side effect of weight gain.

Regarding your question about hugging and this being atypical for autism.

Children with DS and autism are generally more social than kids who only have

autism I believe. The fact that loves to be hugged doesn't exclude the

possibility of autism. My son Brook was just formally diagnosed yesterday

afternoon at Children's Hospital. Brook was being much more affectionate than

usual at the appointment and he was sitting in my husband's lap and coming

over for a quick " Hi " and a quick touch for reassurance and that didn't cause

any problem with his diagnosis.

The doctor diagnosed his autism and she talked about his dislike for

changes in his routine, his lack of communication skills and his lack of

social skills. This includes not playing with other children, not

acknowledging other people, not getting upset when parents leave or return,

not liking to be near other people or even interested in other people.

These were the 3 main categories that she focused on for the diagnosis.

She also was concerned about many other traits, such as he doesn't imitate.

She tried to get him to play with some toys and he was clearly very fearful

of them.

She also said that when diagnosing autism they no longer look at sensory

problems even though children with autism have a lot of problems in that

area. That has changed because children with other diabilities can also have

sensory problems.We spent about 31/2 hours at the clinic and went over all

the issues and behaviors, including spinning objects, playing inappropriately

with toys, sensory problems, self-stim behavior, family history, medical

history, self-injurous behaviors,etc.

Let me know if you have any more questions.

Marisa

Mom to Miles 14, Brook 11 and Genevieve 4

December 4, 2001

Marisa,

Hi, is the one I am concerned about. Hannah is her twin with DS also.

Brook sounds great! How old was he when he began to walk? started walking

this year in May. I thought she would never do it!

I don't know if some what is doing is typical of ASD kids or just DS.

Like I said before, she does like to be hugged and initiates it often. I know

all the kids I know with Autisium do not like being hugged. Maybe it's because

she has DS. I don't know. Do all children with ASD dislike being hugged or held?

Will she have to have special therapy if she has ASD? I guess I better get to

filling out all my paperwork so I can get her in the clinic to be seen. I hope

they know what to do and have a tthe ability to check her.

Thanks for all the info,

Pam mom to identical twins with DS age 6.

poggim@... wrote: Hi Pam,