New/returning member :o) and a few questions

[Guest guest]

Hi all.My name is Joanne and my son is who brings me to this

group. I joined a while back (about 2 years or so) when i first

became concerned that my son may also have autism. At that time he

was 2 1/2-- 3 years old. We saw a doctor at our PDD clinic, and were

told that while he showed many features of having autism, he wasn't

yet at a two year level with his development, so it would be too

difficult to diagnose. So we continued on, using a sensory diet for

his spinning, rocking, teeth grinding, and so on. Things seems to be

going really well, and for the most part i really thought that

sensory issues were getting closer to being behind us. However, now

soon to be 5 years old (2 weeks) and while his gross motor

skills have really gone forward (like walking and such) he is still

not showing much in the way of speech (3 words, about 10 signs). He

is constantly pacing, opens and closes doors constantly. Certain

doors have to remained closed or he becomes very upset. Hand

wringing,avoiding eye contact, he is back to spinning toys, rolling

toys constantly in his hands, wall walking, and the list goes on and

on. Well, his developmental ped saw him yesterday and she brought up

that she feels it is time for him to go back to the PDD clinic. She

really feels that he is showing many features of DS/ASD.

So my question really comes down to, what do i expect at the meeting

at the PDD clinic? Are there certain questions i should expect? Are

their certain questions i should ask? Is there any info that i should

take with me?

Sorry for all the questions, i am really nervous about this appt and

with 's first year of school starting in September, i would

love to get the ball moving on anything and everything that i can so

that i know he will be fully supported in the school system.

Just starting school, is scaring the heck out of me. (

Anyhow....thanks so much in advance for any info that you can give to

me. )

Joanne

[Guest guest]

Hi Joanne, welcome back.

I wish I could help but I'm also in a similar journey.

I could at least suggest some things to share as a recap which I have had to

reflect back to with a book I've read in the past. If you need the title I

could share this later as my dh and are still asleep and the book is by

my bedside. Do not want to wake them up as we had a last minute B-day gathering

here at my house until wee hours. needs his sleep as he is recovering

from being ill almost the entire week. Blah, no fun.

I do know the last name of the author was Hamilton. These are just notes that I

had written down in the past with some sites that I've added which I had shared

with another person who just started this journey. I know you're aware of most

but just reposting what I had written to another person. Hope something helps.

1. Understanding the label has been a good starting point. ( this part was only

pertaining to autism but in our case its the combo)

http://www.altonweb.com/cs/downsyndrome/index.htm?page=capone.html

http://www.autistics.org/access/information/genetic/down.html

http://www.disabilitysolutions.org current issue being discussed is at:

http://www.disabilitysolutions.org/4-4.htm

http//disabilitysolutions.org/news.htm

Vol.3, Issues 5 & 6.

http://www.bbbautism.com/general_beginners_guide_10_24_01.htm

http://www.intellectualdisability.info/complex_disability/autism_downs.htm

2. Allow yourself to grieve: ends and bits of this topic from the book.

This isn't an item to check off a " to do list " , it is important to give yourself

permission to grieve. You haven't lost a child physically, but you may have many

of your dreams and plans for your child. Each person grives differently. Be

careful not judge your spouse or others for how they grieve; instead take time

to talk honestly with each other about how you're feeling. Find what will help

you. Seek the comfort and support of your spouse, family, friends, a counselor,

or clergy--not only for your sake but for sake of your child who needs you now

now more than ever.

If you have other other children, make sure that they, too, have outlets and

support.

Two things to remember. First autism is not a death sentence. Your precious

child is the same today as he was before the diagnosis; you just didn't have the

label before. Second don't become paralyzed by your grief. Choose to use your

grief as a motivator to action.

3. Contact the Autism Research Institute: I could share more info later if

interested. In the mean time to check it out the site

http://www.autism.com/ari

4. Contact the Autism Society. the national number is 800-3Autism. When you

call, ask them to send you a copy of their newsletter and any information and

any information they make available on autism and its treatment. Request from

them the phone number of the AS in your state. Ask for their newsletter and any

available information. Each state has local chapters, so ask for the name and

number of the local contact. Inquire about local services, therapy options and

providers, agencies that provide financial assistance, and family support

groups. You can't immediately read or follow up on all the information you'll

receive, bu tyou'll have it available when you are ready.

5. Put your name on waiting lists. (I too highly recommend this)

Help is available, but often there's a wait, so I receommend you put your name

on several waiting lists right away.

6. Apply for funding

7. Videotape your child. ( Even if you have to borrow like I did in the past of

course now I have invested in one.)

This may sound like common sense, but it can be very important and is often

overlooked. Start today videotaping your child in his daily activities--eating,

playing, talking. Tape him during good and bad situations to document what your

child is like before treatment begins. Once treatment starts, videotape on a

regular basis to record progress.

Videotaping helps in three ways. First they are wonderful to maintain hope.

Video documentation may also be necessary to obtain or maintain funding. Tapes

can document progress, which may give you leverage in securing the support to

continue therapy.

The third benefit of ongoing taping is for training.

8. Find other families.

9. This one is a controversial topic still jot down any changes when child is

vaccinated. (On the book it says to postpone vaccination).

10. The trials of biomedical interventions which I suggest always consut with

the physicians.

Also never hesitate on the trials and errors of the meds.

Sites to review

http://www.greatplainslaboratory.com/Downs-files/frame.htm

http://www.christinaburkaba.com/GettingStarted.htm

http://www.autism-society.org/site/PageServer?pagename=IEP

http://www.bridges4kids.org/

Of course never give up and learn as much as you can. Prayers that you find some

answers and you are on the right track that your son has other issues than the

typical Downs. My input on what I see sounds like some type of underlying

medical issues with the behavior you've mentioned so much like my sons. Once you

have this ruled out than the intervention treatments like ex. the sensory

integration should help him. Too much to learn.

Did you not have a site with your little one? Vaguely remember this.

Irma,Ds/ASD

[Guest guest]

Hi Joanne,

I would expect them to ask a lot of developmental questions and for them to

ask you about your specific concerns. I found it was helpful to make a list

out over the weeks preceding my daughter¹s appointment. I also brought video

tapes and teacher comments of her at different stages to show the skills she

had lost and the evolution of the behaviors I was concerned about. I used

the Disablility Solutions article as my own guideline.

More than anything, make sure they do a comprehensive assessment over a

period of time. On the first appointment, my daughter was having one of

those one in a million days when she was charming and engaging. Over the

next few visits, they saw the other side of her. I think a lot of DS

children do not get correctly diagnosed because they are more social than

typical kids in general. But anytime you have an older child without

speech, the child usually falls into three camps- those with very severe

cognitive impairment, those with hearing impairment, and those with ASD.

Based on what you wrote, I think your concerns are very justified. One

thing I would try at home is to see if responds to visual cues or

schedules, such as when you say it¹s time for bed, you give him pictures of

the process of getting ready for bed. Kids with ASD tend to respond to this

type of communication better than verbal alone. It was very helpful to me.

Good Luck with this. It sounds like you are a very good advocate for your

child and that he is lucky to have you on his side.

Therese Mom to 13 yo DS-PDD

> Hi all.My name is Joanne and my son is who brings me to this

> group. I joined a while back (about 2 years or so) when i first

> became concerned that my son may also have autism. At that time he

> was 2 1/2-- 3 years old. We saw a doctor at our PDD clinic, and were

> told that while he showed many features of having autism, he wasn't

> yet at a two year level with his development, so it would be too

> difficult to diagnose. So we continued on, using a sensory diet for

> his spinning, rocking, teeth grinding, and so on. Things seems to be

> going really well, and for the most part i really thought that

> sensory issues were getting closer to being behind us. However, now

> soon to be 5 years old (2 weeks) and while his gross motor

> skills have really gone forward (like walking and such) he is still

> not showing much in the way of speech (3 words, about 10 signs). He

> is constantly pacing, opens and closes doors constantly. Certain

> doors have to remained closed or he becomes very upset. Hand

> wringing,avoiding eye contact, he is back to spinning toys, rolling

> toys constantly in his hands, wall walking, and the list goes on and

> on. Well, his developmental ped saw him yesterday and she brought up

> that she feels it is time for him to go back to the PDD clinic. She

> really feels that he is showing many features of DS/ASD.

> So my question really comes down to, what do i expect at the meeting

> at the PDD clinic? Are there certain questions i should expect? Are

> their certain questions i should ask? Is there any info that i should

> take with me?

> Sorry for all the questions, i am really nervous about this appt and

> with 's first year of school starting in September, i would

> love to get the ball moving on anything and everything that i can so

> that i know he will be fully supported in the school system.

> Just starting school, is scaring the heck out of me. (

> Anyhow....thanks so much in advance for any info that you can give to

> me. )

> Joanne

>

>

>

> --------------------------------------------------

> Checkout our homepage for information, bookmarks, and photos of

> our kids. Share favorite bookmarks, ideas, and other information by including

> them. Don't forget, messages are a permanent record of the archives for our

> list. http://groups.yahoo.com/group/

> --------------------------------------------

>

>

>

>

[Guest guest]

Dear Joanne,

We just joined to loop and your post just shot out at me. We have a 5

yr old daughter, Hannah, who has ds, but no autism label, yet. She sounds alot

like , teeth grinding, stimming on strings... non-verbal except for no

and up. signs a handful of sign when in the mood, she started walking a 3, and

gross motor is her best advance. She also has a BIG thing about closed doors!!

She attends the public school, early childhood special education program, which

is 2 1/2 hours a day. She is a puzzle to the teachers and therapists. Some

days she is ok, but more than not she has difficult days. She is very 'busy'

and her thoughts and movements are unorganized. She grabs and pinches at

randon. So we asked our ped dr for his suggestions and he suggested an

evaluation by a ped. psychiatric, this man worked with ds children. So we went.

(I don't know what a PDD clinic is, but I thought our experience might prepare

you )

He was nice and after being there 2 hours with Hannah, he thought she might have

ADHD, with sensory issues ( he wrote scrpit so she could have a sensory

intergation evaluation-and she did- she does have sensory issue), he wanted her

to have a EEG to make sure there is no seziures going on. He said she had Tics,

her goofy movements and grunting, and he said he could write a script for her

teeth grinding (which we did not do!!) He wouldn't rule out autism ,but thought

it was slight possibility and that ADHD was the main problem. We were

dumbfounded, we really thought that we would leave there with a different

outlook from a professional.

We know Hannah has her issues, but that was very intense for us. We scheduled

an EEG and did the sensory thing, which gave us hope because the therapist said

that once she is on a 'sensory diet' her behavior should improve 50%. Right now

we are just waiting for insurance approval to start. That was our experience.

Just remember that you know your son better than anyone.

Hope this helped.

Sharon

[Guest guest]

Hi Sharon,

What you've written I could totally relate on the bizarre behaviors.

In our case with our kids being born with Down syndrome makes it

hard for many professionals and for us to see the red flags.

When we use to live out in the Dallas/Fort Worth area my son was 3

y/o and same thing everyone kept telling me he was ADHD. So I had

him looked at with numerous medical physicians and same old story,

no. We moved out here to San and same thing. I figure what

the heck I'll continue attending the Down syndrome & even a few

ADHD support group just in case the docs were wrong and I did not

fit in but I wanted some answers and I figure it would not hurt to

attend but it did because I was still hanging at the end of the

rope. Same thing no one was able to handle him beside this one

teacher when he was about 5 y/o but there were some changes and my

son ended up attending a different school/new environment. When my

son turned 12 y/o I kept praying for some answers. He was not toilet

trained, still would not talk, screamed in difiance when I would

pick him up, very picky eater, when I had tried to include him on

outings you got it he would not sit still he would immediately get

out of the chair and would run away. Chasing time, he seemed deaf

like would ignore me calling him would not stop. No and stop had no

meaning to him at all. Would not acknowledge my commands and of

course too much to name which caused lots of frustration and just to

know everyone else enjoyed their outings. I thought I was going to

lose it until good old Joan's newsletter The Disability Solutions

had opened the doors for us. But, of course it took some work to

convince the information that I had found. All the educators and

medical professionals kept telling he was just Downs and do not

believe everything I had read and bogus to alot of my info. Then I

started reading up books, attended Autism support groups, medical

conferences for Autism and boy everything everyone had mentioned

they were describing my son and I would apply whatever trials and it

did help him progress some. I actually was able to fit in and

realized I had some learning to do. Oh, but I had to use the wording

ASD. Then by the age of around 14 1/2 it was finally included and

boom! Lots of services were offered and it made a world of

difference for my son. This is now when any medical or educational

professionals would like to tell me something that I know deep in my

heart does not imply towards my son I'm reading to strike back.

Never again shall I enter in a blind way. As a matter of fact

yesterday I was just asked if my son was autistic and of course I

said yes and then of course I'll throw the Down syndrome which many

are not noticing when he has his glasses on but are surprised to see

that they only had noticed the autism in him. I Thank our Dear Lord

for bringing Joan to our rescue. Of course it took action at my end.

Totally new to us and we quickly found out how little people,

including doctors know about it. A diagnosis gives people a false

sense of having found the problem without truly knowing the

underlying biological cause. However, no matter which label a child

receives within the spectrum, the treatment strategies are much the

same.

Good luck waiting on your insurance approval for the SI treatment,

it has helped us alot. Continue exploring what you can and when you

are ready. Taking each step at a time, you may discover, as we have,

the anxiety about the unknown transforming into new hope.

Irma,15,Ds/ASD

[Guest guest]

Sharon, my son also grinds his teeth terribly, but we have always been told

there was nothing we could do about it. what RX was he going to give you for

this? what was the down side? why didn't you use it?

DeDee

and he said he could write a script for her teeth grinding (which we did not

do!!)

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kids. Share favorite bookmarks, ideas, and other information by including them.

Don't forget, messages are a permanent record of the archives for our list.

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[Guest guest]

Dear Dedee,

I don't recall the name of the drug, but the professional term for teeth

grinding is bruxism.

The reason I didn't do it was because teeth grinding isn't a major issue with

us. When she is sick it gets worse, but we believe that it's one of her sensory

problems. Plus, He seemed to be pushing the drugs, " take this for ADHD, this

for Tics, this for bruxism " , We want to see what SI therapy does for her.

Sharon

Re: New/returning member ) and a few questions

Sharon, my son also grinds his teeth terribly, but we have always been told

there was nothing we could do about it. what RX was he going to give you for

this? what was the down side? why didn't you use it?

DeDee

and he said he could write a script for her teeth grinding (which we did not

do!!)

--------------------------------------------------

Checkout our homepage for information, bookmarks, and photos of

our kids. Share favorite bookmarks, ideas, and other information by including

them. Don't forget, messages are a permanent record of the archives for our

list. http://groups.yahoo.com/group/

--------------------------------------------