Re: new ASD and DS diagnosis

[Guest guest]

We all have resources, docs, toys, etc that work with our kids. The easiest

and fastest way, iIMHO, is to state a need or question, and then watch the

supportive e-mails!!.

Been on this list for 7 years and still get great help at least weekly! We

have people of all ages on this list. Someone has been there before us or

is there now and can relate.

I definately remember when we didn't " fit " at DS meetings, outings, or even

the straight DS list.

Sara - Choose to make lemonade, not complain about the lemons.

>

>Reply-To:

>To:

>Subject: new ASD and DS diagnosis

>Date: Mon, 27 Dec 2004 21:16:09 -0000

>

>

>

>Hello everyone! My name is Deb and I am a clinician working

>with a family whos 4 year old son was diagnosed with Autism

>and Down Syndrome. They are very proactive and feel isolate

>from the DS community because of the autistic " features " . I will

>let them know about this resource but I was hoping to hear from

>people about their experiences around school issues,

>behavioral components, and general " what do you think would

>be the most helpful (resources, do's and don'ts, and

>organizations) in working with them. Thank you for this

>awesome resource!!!

>

>

>

>

>

>

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[Guest guest]

Hi Deb,

Welcome aboard! It is wonderful to hear about the family whom you

are assisting. Ok, so you ask now what after the dx is confirmed or

when newly diagnosis? Ok, not in these words but lets see where to

start. I do understand the feeling of not fitting in as once upon a

time I walked in those shoes, too. The parents of your " Golden

student/Client " will have to get educated now on the " A " word, this

should be his primary dx and the MR or Down syndrome second as the

AU dx effects his education needs.

Let me see, " Where do I start? "

Research: We have wonderful information on the Group list posted

under the links & files. Make sure everyone receives a copy of the

Disability Solutions Newsletter and given to the teacher, special-ed

Coordinator, etc.. Plus do not hesistate on asking this list for any

question. Many on this list has had the pleasure of having their

child seen by Dr. Capone, my son was seen by Dr. Bonnie

which we could vouch for when it comes to working with our child

with unique challenges as they have a dual dx, there might be added

dx's but for now I'll just stick to the dual dx. I've mentioned

these 2 medical professionals because they have been a Godsend

working with us parents who have chosen this field on specializing

with their patients with the dual dx's and they are mentioned part

of the research in the newsletter along with other professionals

whom Joan (moderator & editor) has had the pleasure of working with

and sharing her info, along with others on this list.

Find a support group that will understand and cope with the child's

newly dx.: A+, this you have accomplished due to joining this

wonderful list so please do have the parents join in as they will

not feel alone and will probably assume we are talking about their

child when in reality we can relate and have similar issues. : )

You are always welcome on this list as you sound like a dedicated

person. Yes, I know its your job but you chose to search for answers

for your client, they have been Blessed to have you by their side.

Believe me, this I know with the journey I've been through with my

son. You will renew hope in their child's future, as their child

could learn. Not in the traditional way but will require major

modifications of materials and the addition of visual supports to

demonstrate unique abilities.

Learn about the Laws that protect people with disabilities also to

remember to put their child first and their child's dx or label

second.

Ex. My child with DS/ASD, not my autistic or Down syndrome child. ; )

During IEP meetings to tape & document everything and have their

child's photo to remind the team of whom they are speaking about.

Learn & learn about the issues about the Law and Legislative staff

or issues as this could become part of some of the services being

cut with school district or any Mental Health programs and we must

continue to advocate those who make these descisions.

Learn what is a typical behavior or is it a sensory issue? So that

the child would receive an appropriate strategy of discipline.

Follow the ABC's of Behavior- This is a simple documentation form

that asks for just the facts of the situation. Be sure to include

all of the facts like the date and time.

A - Antecedent - The who, what, when, when, and where that occurred

prior to the behavior.

B - Behavior - The behavior of the student.

C - Consequence - What happened to the student as a result of the

behavior.

If you ask for help with your (student's) behavior you will be

asked for documentation. A completed ABC form will help you get help

more quickly.

Determine which treatment will best meet the needs of the child and

the family. (Any eval done I would highly recommend a Certified

Behaviorist, an OT qualified specialist in Sensory Processing or PT

who has Autism knowledge, an audiologist to rule out any hearing

impaired, Speech Pathologist, etc. all school personnel working with

the student to have some Autism training even with an Autism

specialist aboard. This is where you come in to make sure your

client has a letter of recommendation or prescriptions for the

services that his parents would like to tackle to receive the proper

training and for it to be continue at home, recommending that the

parents receive In-Home Parent Training with whatever area the

parents have decided once again to tackle at home that the school is

working with. Parents could request for the teachers credentials to

see how much AU training the teacher has recieved.

The school should modify around his level in a structure routine

which will also apply at home to contribute to the child's treatment

example: TEACCH.

http://www.teacch.com/edkidsls.htm (Learning Styles of Students with

Autism by Mesibov, PH.D whom I had the pleasure hearing at an

Autism Parent-Training meeting.

Another great site is AUTISMINFO.com

Have them check out the book at a library: The Out-of-Sync

Child:Recognizing and Coping with Sensory Integration Dysfunction by

Kranowitz, Carol Stock.

This will help them understand their child if not toilet-trained

yet, due to sensory issues and low-muscle tones,etc. Lack of sleep,

eating issues, hair cut, dental, wearing certain clothing or none,

shoes or none, teeth-grinding, melt-downs,running/escape artist, to

name for now when any underlying medical issues have been ruled out,

which could also be due to a physical factor or food sensitivity

(another story as this could involve OCD behavior).

http://www.mindspring.com/~dgn/sensory.htm(A Sample Sensory Diet)

I met a couple of wonderful speakers this past Sept. at an AU

Conference and one of them have been great emailing when I'm in a

bind, you could review their site and share it with the parents, at

www.kelchner.net (Golden Ideas for Golden Students)by Kathy Kelchner

& Joane Walvoord.

Toilet-training: Toilet Chart - Use this to chart toileting behavior

for those students who need such documentation. You can send it home

for parents to use at home too! Managing the toileting ritual with

visual cues. Learning how to feel wet or dry which is one of the

sensory issue of not understanding the concept of it.

Parents must learn to advocate in a persistant, positive manner. To

continue following their gut instincts when all fails.

Attend Parent-Training Autism workshop. AU Conferences if possible,

Local AU Support Groups do not mention about Down syndrome yet until

the parents feel they have nailed similar experiences with the

parents. If the support groups revolve around trying to " CURE or

recover " , find another AU Support group as they need " whether it

will improve their child's quality of life " . If the local support

group are discussing about local resources info, medication, dental,

educational or medical professionals, toilet-training,eating,

Behavioral, sensory integration, play therapy, music therapy, ABA,

Bio-med Intervention, Sibling, Stress-relief/respite, sleep issues

to name for now. Than they are in the right place. They are not to

waste any valuable time on hearing of possible cures and use their

energy towards postive things to relief understanding their child.

It could get pretty overwhelming with the trials and errors and

bombarded with educating ourselves besides the other daily

activities involved.

Volunteer, Volunteering promotes healing and provides self-education

opportunties.

Thank you for your valuable time inquiring.

Sorry I tend to ramble on as I'm just 's mom who has been

eager to get my hands on any resource information to help me keep

helping my son. Hope this helps for now. Some of what I wrote are my

notes from AU Conferences that I have attended. There is just so

much to share.

Irma,16,DS/ASD

>

> Hello everyone! My name is Deb and I am a clinician working

> with a family whos 4 year old son was diagnosed with Autism

> and Down Syndrome. They are very proactive and feel isolate

> from the DS community because of the autistic " features " . I will

> let them know about this resource but I was hoping to hear from

> people about their experiences around school issues,

> behavioral components, and general " what do you think would

> be the most helpful (resources, do's and don'ts, and

> organizations) in working with them. Thank you for this

> awesome resource!!!

[Guest guest]

Thanks for all of the information on how to help support the

family I am working with!! Hopefully they have gone online but in

case they haven't I printed your responses. Deb

> >

> > Hello everyone! My name is Deb and I am a clinician working

> > with a family whos 4 year old son was diagnosed with

Autism

> > and Down Syndrome. They are very proactive and feel

isolate

> > from the DS community because of the autistic " features " . I

will

> > let them know about this resource but I was hoping to hear

from

> > people about their experiences around school issues,

> > behavioral components, and general " what do you think

would

> > be the most helpful (resources, do's and don'ts, and

> > organizations) in working with them. Thank you for this

> > awesome resource!!!

[Guest guest]

Hi Deb,

Your welcome. Just hope something helps. There is a site that Louise

had written to me in regards to a Conference. Same site are a couple

of wonderful authors who are knowledgeable sisters whom I've had the

pleasure hearing one from Louise/ via-video which was Barbara Doyle

and had the opportunity to hear D.lland at an AU Conference.

They have a wonderful book out, sorry can't remember the title right

now but its talking about ASD, close to like A to Z, my brain went

blank, you'll see it on the site.

www.asdatoz.com

It will help the parents get educated on how much power when

discussing about ASD.

Empower with information.

Model for others with words and actions.

Words that can show respect, acceptance and possiblities (the

opposite of shame & embarrasement). It has helped when to discuss

with family, friends, caregivers, teachers, church, etc.

Might want to check to see if the local library has it available to

review.

Irma,16,DS/ASD

>

> Thanks for all of the information on how to help support the

> family I am working with!! Hopefully they have gone online but

in

> case they haven't I printed your responses. Deb