Re: Just found this group

[Guest guest]

Our son is younger (6), but I will say that holidays and the change of routine

is really tough on most of our kids so if your stepson is aggressive, some of

that is due to the frustration of wanting his usual routine and being anxious

about what each day will bring simply because it is different. Its a level of

anxiety that I don't think we neurotypicals can really understand. If he can

have some kind of routine every day (and if your stepson is non-verbal, some way

of visualizing it for him) then he may be happier. Holidays and surprises and

special outings are usually not liked by our kids. Also, does he have a space he

can retreat to when he is overwhelmed? Our son closes himself in the dark

laundry room and sits in there when its all just too much to bear. Does he have

a favourite stim he can use to calm down? This is more necessary over the

holidays. Does he dislike crowds? I'm assuming yes. Try to limit how much he

has to be in a crowded place. As exhausted as I can get over the holidays with

our son, I try to remember that its all much more overwhelming for him, being

dragged around and not knowing what comes next or how loud its going to be or

why it is even happening. Our son is already signing " school " and upset when I

tell him no - and there's 2 weeks to go. Sigh.

Best of luck,

Sent on the TELUS Mobility network with BlackBerry

Just found this group

Anyone out there with a teen-aged DS ASD? I have a step-son who is only with me

and his dad during school holidays. I wonder if there is any hope of him

developing any further. Non-verbal and often belligerant, increasingly so

lately. Are these kids supposed to be terrors? I've only been involved with

him for about a year. Anyone have a similar circumstance?

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

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

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]

Another thing to remember is that when a kid with DS ASD is in the teen years

they go through all the " typical " hormonal changes. These are sometimes

particularly hard for kiddos who are non-verbal because frequently their only

way to express being on the hormone roller coaster is to act out. Something I

find helpful is to try to remember that behavior is communication. It's not

always a form of communication we want, but it can help us to know what's going

on with our kiddos if we take the time to figure it out. I know that's really

not a lot of help when you have someone screaming or acting out, but if you can

ride out the storm and then try to figure out what caused it when you're out of

the situation it can help you to ease the problem when you encounter it again.

Another thing that might help is to figure out what some of the tings are that

make your step son feel at home and bring them with him when he comes to your

house. For example when we travel we always make sure Aden's head faces south in

his bed, just like his bed at home. He also brings his pillow, I think it smells

like home to him.

Most important to remember though is to be kind to yourself and him. You have

stepped into a world that is sometimes very frustrating and emotionally

difficult. Each time he comes to you it throws him completely out of his comfort

zone.  He's not trying to be difficult, he just doesn't have any better way to

cope. Progress is slow, but if you are willing to put in the work to understand

his world it will happen.

Take care,

________________________________

To:

Sent: Mon, December 20, 2010 3:12:57 PM

Subject: Re: Just found this group

 

Our son is younger (6), but I will say that holidays and the change of routine

is really tough on most of our kids so if your stepson is aggressive, some of

that is due to the frustration of wanting his usual routine and being anxious

about what each day will bring simply because it is different. Its a level of

anxiety that I don't think we neurotypicals can really understand. If he can

have some kind of routine every day (and if your stepson is non-verbal, some way

of visualizing it for him) then he may be happier. Holidays and surprises and

special outings are usually not liked by our kids. Also, does he have a space he

can retreat to when he is overwhelmed? Our son closes himself in the dark

laundry room and sits in there when its all just too much to bear. Does he have

a favourite stim he can use to calm down? This is more necessary over the

holidays. Does he dislike crowds? I'm assuming yes. Try to limit how much he has

to be in a crowded place. As exhausted as I can get over the holidays with our

son, I try to remember that its all much more overwhelming for him, being

dragged around and not knowing what comes next or how loud its going to be or

why it is even happening. Our son is already signing " school " and upset when I

tell him no - and there's 2 weeks to go. Sigh.

Best of luck,

Sent on the TELUS Mobility network with BlackBerry

Just found this group

Anyone out there with a teen-aged DS ASD? I have a step-son who is only with me

and his dad during school holidays. I wonder if there is any hope of him

developing any further. Non-verbal and often belligerant, increasingly so

lately. Are these kids supposed to be terrors? I've only been involved with him

for about a year. Anyone have a similar circumstance?

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

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

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]

Welcome to our list. If I understand you correctly, you have a step-son who

is dx with DS-ASD?? It isn't what he is but it certainly ispart of who he

is - like brown hair and green eyes.

When my son was a teen - between the ages of 13-19 he was extremely

difficult to live with for me. He was much better when not with me. SUmmer

camp and monthly w/e camp with respite and habilitation help in between made

those years bearable. BUt I have been so surprised at how much my son has

grown over the last 5-6 years. He is now 25. He NEVER tantrum and has

done nothing even remotely aggressive in at least 5 years. I will say that

the summer ELie was 15, I took him to a new camp, and dropped him off -

didn't meet staff, just left him there. He did fine. BUt I was at my wits

end. I have learned better since then.

We also learned by structuring our son's day, he was much happier. Even

when he was much oless verbal, we worked with a printed calendar for each

day - outline the plans for the day (my husband is retired Navy so a POD was

very comfortable for us.) This followed what was done in school. IF this

young man is spending extensive time with you, you may want to learn how his

school and home life are structured when he is not with you.

He still has times when he freezes - as in retreats to his own world and

cannot seem to unlock. We have learned to wait him out.

Fortunately for our family, when ELie became 23, he and a friend who is his

caregiver decided to rent a home together. With the help of MEdicaid waiver

funding, ELie lives in his own home - with his life as he likes it and

who is his friend but Neuro typical gets paid for being his 24/7 caregiver.

Elie comes home frequently to visit - and he makes it plain that he does not

LIVE here with us - he is only visiting for a w/e or a week.

On Mon, Dec 20, 2010 at 5:45 PM, sickofthiscrap wrote:

>

>

> Anyone out there with a teen-aged DS ASD? I have a step-son who is only

> with me and his dad during school holidays. I wonder if there is any hope of

> him developing any further. Non-verbal and often belligerant, increasingly

> so lately. Are these kids supposed to be terrors? I've only been involved

> with him for about a year. Anyone have a similar circumstance?

>

>

>

--

Sara- different pathways lead to Nirvana.

[Guest guest]

Welcome to the group as this is a wonderful support group. My son who is now 15

yrs old does not like change. When Holidays come it brings change and it is hard

for him to adapt. We have an behavioral specialist or ABA therapist working with

my son to help him not have Holiday meltdowns. A lot of his real unpleasant

behaviors changed when we changed his diet. He used to come home everyday from

school and scream (cry) for 2-3 hours thank God he no longer does that. Does his

dad try to interact with him like any other children? My son is non-verbal but

he communicates through pecs on his communication device. How does this child

communicate his wants and needs? Cyndi B

>

> Anyone out there with a teen-aged DS ASD? I have a step-son who is only with

me and his dad during school holidays. I wonder if there is any hope of him

developing any further. Non-verbal and often belligerant, increasingly so

lately. Are these kids supposed to be terrors? I've only been involved with

him for about a year. Anyone have a similar circumstance?

>

[Guest guest]

well my nathan guy is 19, and can be a liitle cranky with snow days and

christmas vacation. they throw off his routine, Come to thinl about it they

throw all of our routines off and we all get a liitle cranky, lol. But as for

the developing and learning, i still often see nathan pick up new things,

and i

think that just like everyone else he will continue to develop and learn

throughout his life, it may be slower but it is there. shawna

 

 

 http://sewshawna.blogspot.com

________________________________

To:

Sent: Mon, December 20, 2010 4:45:14 PM

Subject: Just found this group

 

Anyone out there with a teen-aged DS ASD? I have a step-son who is only with me

and his dad during school holidays. I wonder if there is any hope of him

developing any further. Non-verbal and often belligerant, increasingly so

lately. Are these kids supposed to be terrors? I've only been involved with him

for about a year. Anyone have a similar circumstance?

[Guest guest]

cathy I know what you mean!! nathan loves his portable dvd player, best

invention ever for our autistic ones, next to shoe strings and dont forget the

infamous Woody doll,lol.We have a dvd/cd carry book/case and his rechargeable

player any time we go somewhere, along with his " bag " of choosen toys he wont

part with. Even grandma lets him shut himself in her room when so many of us

are

there for the holidays, we dont even make him eat with all of us,we offer but if

he says no, we just save him back a plate, and sometimes after were down to a

few he will eat, but often its not until we get home and we just pop his plate

inthe microwave and he still enjoys the meal. This year  has thrown us

off. He has really figured " presents " out over the last few years, needing no

futher encouragement to open them, or his brother to just open what remains for

him. And now he wont shut up about presents, uuugh, he knows we went shopping

for them as brother had to sit with him all day so " mom and dad are shopping

for

christmas presents "  and nathan didnt get to see the fruits of our day long

outing last week, so wont shut up about " presents "   We cant put them under the

tree this year because last year nathan kept opening them before the big day.

he

wouldnt even let his present he made for us in art to stay under the tree, kept

insisting we open it so we did and he was very excited for us to see his lovely

christmas trees he made, theyre on the bookshelf with a snowman he made

recently. Now he insists on his presents. We have braught out the calender

several times and reminded him which night is church and grandma's house, and

which day we open presents at home. And we keep asking him  " what day do we get

presents? " when he starts in again, he answers correctly but is still being a

butthead about it. uuuugh howmany days left? lol shawna

 

 

 http://sewshawna.blogspot.com

________________________________

To:

Sent: Mon, December 20, 2010 5:12:57 PM

Subject: Re: Just found this group

 

Our son is younger (6), but I will say that holidays and the change of routine

is really tough on most of our kids so if your stepson is aggressive, some of

that is due to the frustration of wanting his usual routine and being anxious

about what each day will bring simply because it is different. Its a level of

anxiety that I don't think we neurotypicals can really understand. If he can

have some kind of routine every day (and if your stepson is non-verbal, some way

of visualizing it for him) then he may be happier. Holidays and surprises and

special outings are usually not liked by our kids. Also, does he have a space he

can retreat to when he is overwhelmed? Our son closes himself in the dark

laundry room and sits in there when its all just too much to bear. Does he have

a favourite stim he can use to calm down? This is more necessary over the

holidays. Does he dislike crowds? I'm assuming yes. Try to limit how much he has

to be in a crowded place. As exhausted as I can get over the holidays with our

son, I try to remember that its all much more overwhelming for him, being

dragged around and not knowing what comes next or how loud its going to be or

why it is even happening. Our son is already signing " school " and upset when I

tell him no - and there's 2 weeks to go. Sigh.

Best of luck,

Sent on the TELUS Mobility network with BlackBerry

Just found this group

Anyone out there with a teen-aged DS ASD? I have a step-son who is only with me

and his dad during school holidays. I wonder if there is any hope of him

developing any further. Non-verbal and often belligerant, increasingly so

lately. Are these kids supposed to be terrors? I've only been involved with him

for about a year. Anyone have a similar circumstance?

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

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

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]

I do appreciate the ideas. I think the hardest part with this boy is he really

has NO structure to his day. Sure, outside holidays he's in school but besides

that I don't think mom keeps him on a schedule at all. His activities...well

that's the problem, there really is nothing he wants to do or is willing to

learn to do. He is most definitely spoiled, that is, he does or tries to do

whatever comes to his mind. He watches his video's awhile, " plays " with his

stuffed friends, likes to swing but nothing keeps him occupied for long. He

seems bored and yes absolutely I believe hormones at this age (he's 17)must play

a big part. His communication is another problem. He seems frustrated that he

can't communicate his needs, no sign language was ever taught to him. If he

needs me to, say, fix his VCR he'll grab me and take me back to his room. We're

ordering a device that he should have had a long time ago, called TechSpeak to

help with the communication piece. Hopefully that will help some.

>

> You have received some great ideas from the group. Sara mentioned a

> calendar and a list to help others re her son and pointed out

> an important point and that is that behavior is communication. I wonder

> how your step-son communicates. Our son is hearing impaired and non verbal.

> We use and where lives and goes to workshop they use a calendar with

> pictures so he knows when things are happening. This calendar is to be

> reviewed and i.e. days counted off when will be coming on a home visit,

> going to activities or doctor appts. also uses sign language.

>

>

>

> Check out Hodgdon has a great site for using Visual Strategies for

> improving communication http://lindahodgdon.com/ Tom Pomeranz Ed D website

> for some helpful information on behavior.

> http://www.universallifestiles.com/pomeranz.html or Barbara Doyle's

> websites http://www.barbaradoyle.com/handouts.html and

> http://www.asdatoz.com/ for many handouts on behavior and communication.

>

>

>

> Louise, Mom to 48

>

>

>

>

>

>

>

> <http://groups.yahoo.com/group//message/107978;_ylc=X3oDMTJyOWo0OG5

> wBF9TAzk3MzU5NzE1BGdycElkAzQxMDMwNQRncnBzcElkAzE3MDUwMTM0ODEEbXNnSWQDMTA3OTc

> 4BHNlYwNkbXNnBHNsawN2bXNnBHN0aW1lAzEyOTI5MzczNzU-> Just found this group

>

>

> Posted by: " sickofthiscrap "

> <mailto:mary.elrod@...?Subject=%20Re%3A%20Just%20found%20this%20group>

> mary.elrod@... <http://profiles.yahoo.com/mary.elrod> mary.elrod

>

>

> Mon Dec 20, 2010 2:45 pm (PST)

>

>

> Anyone out there with a teen-aged DS ASD? I have a step-son who is only with

> me and his dad during school holidays. I wonder if there is any hope of him

> developing any further. Non-verbal and often belligerant, increasingly so

> lately. Are these kids supposed to be terrors? I've only been involved with

> him for about a year. Anyone have a similar circumstance?

>

>

>

>

>

>

[Guest guest]

Where did you find your behavioral specialist? Our boy has never had this kind

of help that I know of. At least not in many years. I feel way over my head

here. I would love to find a professional to help. Does your insurance cover

the cost. As far as his communication. When he's ready to eat, he comes to the

table. Otherwise he might as well be another species. Is there anything special

about your sons diet?

> >

> > Anyone out there with a teen-aged DS ASD? I have a step-son who is only

with me and his dad during school holidays. I wonder if there is any hope of

him developing any further. Non-verbal and often belligerant, increasingly so

lately. Are these kids supposed to be terrors? I've only been involved with

him for about a year. Anyone have a similar circumstance?

> >

>

[Guest guest]

Hi , I can imagine how difficult it can be for you since you only see your

stepson during school holidays AND been involved for only about a year.

Both of which factor into the equation; one factor of which is adjustment time

for everyone.

Speaking from my own experience, albeit one slightly different than your own, I

suggest that if at all possible you let go of expectations. Clear your mind

completely of " should be " or " doesn't do " , " spoiled " , etc.

The reason I suggest this is these word-thoughts will get in the way of you or

anyone else clearly seeing another being's real strengths & needs.

Beings with Down Syndrome have specific qualities,characteristics needs; both

developmentally & medically & in some case behavoirally.

Beings on the Autism Spectrum have specific qualities, characteristics and

needs; both developmentally, behaviorally & in some cases nutitionally.

When you have a being that has multi handicapping conditions; each condition

should be treated and/or approached with specific interventions for each

condition. In other words, if a being has DS with deafness, one cannot expect

that being to know how to vocalize words or follow spoken directives.

I would like to suggest that you become familiar with Down Syndrome at this

overview:

http://www.ds-health.com/

Other parents have provided valuable links regarding aspects on behavior &

communication. Perhaps they can provide a link to one with an OVERVIEW on the

many aspects of ASD as well.

I would also like to suggest that you & hubby become familiar with any medical

considerations that your step son may be experiencing and/or needs to have

checked out. Aside from the sheer overwhelming-ness of changing environments,

there can also be something simple that is medical affecting his behavior.

Regarding communication. Your stepson is in fact communicating to you whenever

he takes you to what he needs. Be glad that he does this & KNOWS to do this

instead of screaming or destroying the premises. Communication covers a large

area. Your stepson shows an understanding (receptive language) that he needs to

communicate but cannot verbally. So he comes & gets you to show you (expressive

language) what he wants/needs.

I would also like to add that any alternative communication is a step by step

learning process for everyone involved. Which takes time.

Please try not to become overwhelmed by all this info being given. Everyone has

given you value & my post is focused on the nitty gritty of entering an

unfamiliar landscape.

What will perhaps help you both is to remember that you & your stepson are both

entering " unfamiliar landscapes " whenever he enters your home.

What will help you the most is what I have listed above about expectations, etc.

I do not mean that you should not have a routine or rules. But you will need to

implement routine & rules based on your clear understanding of all of your

stepson's condition(s).

And the clear understanding that they have to be flexible because something as

simple as a cold can change the dynmics big time.

My child, DJ is 15 with DS, medical issues & severe/profound hearing & speech

impairment. Although he was not been formally diagnosed as being on the autism

spectrum, he has many of the characteristics associated with it.

I became his mom when I married his dad (a widower). The difference for me is

that I came into his life when he was 27 months old.

However, I came into his life with all the intentions & expectations that a

teacher could possibly have. I had 15 years of teaching birth to age 5

(multiple handicapping conditions) plus a few years of providing Lovaas (ABA)

therapy privately. My youngest biological son had just graduated from college

so I had a good 20 year gap of any 24/7 hands on parenting of an infant/toddler.

I had no qualms because after all I knew it all!

HAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHA

Trust me. Ditch any & all of your pre-concieved notions or expectations. Learn

what you can about DS & Autism. Really get to know your stepson. Then find even

just one thing that is just " your cool or fun thing " to do with your stepson &

make it a routine/ritual. This will help with bonding. Above all give selves

time for adjustment.

And please, do not become disappointed or stressed if some things do not appear

to work. I will hazard a guess that there is not a single parent on this list

that has not tried things that did NOT WORK. Perhaps a bazillion things until

the one thing was found that was meaningful.

I hope this has been of some help.

Kris

> >

> > You have received some great ideas from the group. Sara mentioned a

> > calendar and a list to help others re her son and pointed out

> > an important point and that is that behavior is communication. I wonder

> > how your step-son communicates. Our son is hearing impaired and non verbal.

> > We use and where lives and goes to workshop they use a calendar with

> > pictures so he knows when things are happening. This calendar is to be

> > reviewed and i.e. days counted off when will be coming on a home visit,

> > going to activities or doctor appts. also uses sign language.

> >

> >

> >

> > Check out Hodgdon has a great site for using Visual Strategies for

> > improving communication http://lindahodgdon.com/ Tom Pomeranz Ed D website

> > for some helpful information on behavior.

> > http://www.universallifestiles.com/pomeranz.html or Barbara Doyle's

> > websites http://www.barbaradoyle.com/handouts.html and

> > http://www.asdatoz.com/ for many handouts on behavior and communication.

> >

> >

> >

> > Louise, Mom to 48

> >

> >

> >

> >

> >

> >

> >

> > <http://groups.yahoo.com/group//message/107978;_ylc=X3oDMTJyOWo0OG5

> > wBF9TAzk3MzU5NzE1BGdycElkAzQxMDMwNQRncnBzcElkAzE3MDUwMTM0ODEEbXNnSWQDMTA3OTc

> > 4BHNlYwNkbXNnBHNsawN2bXNnBHN0aW1lAzEyOTI5MzczNzU-> Just found this group

> >

> >

> > Posted by: " sickofthiscrap "

> > <mailto:mary.elrod@?Subject=%20Re%3A%20Just%20found%20this%20group>

> > mary.elrod@ <http://profiles.yahoo.com/mary.elrod> mary.elrod

> >

> >

> > Mon Dec 20, 2010 2:45 pm (PST)

> >

> >

> > Anyone out there with a teen-aged DS ASD? I have a step-son who is only with

> > me and his dad during school holidays. I wonder if there is any hope of him

> > developing any further. Non-verbal and often belligerant, increasingly so

> > lately. Are these kids supposed to be terrors? I've only been involved with

> > him for about a year. Anyone have a similar circumstance?

> >

> >

> >

> >

> >

> >

[Guest guest]

For Finding a Behavioral Specialist you might call the local Autism support

group and ask who they would recommend in your area. If you tell me what state

and county I can try to find some numbers for you.Insurance does not cover that

much in the way of behavioral supports so I started applying for grant money to

get money to pay ABA therapist. However in some states their is money for

behavioral help. You just need to find your niche. About the communication

piece. So what you are telling me is that this 17 yr old has had no way at all

to get his voice heard. No communication device? Wow that is sad. The teach to

talk is a step in the right direction and lets hope everyone gets on board with

teaching him to use this device. My son started with PECS or Picture exchange

and is not using a Nobi AAC device with pictures. Who had the idea to order the

teach talk device? Cyndi B

> > >

> > > Anyone out there with a teen-aged DS ASD? I have a step-son who is only

with me and his dad during school holidays. I wonder if there is any hope of

him developing any further. Non-verbal and often belligerant, increasingly so

lately. Are these kids supposed to be terrors? I've only been involved with

him for about a year. Anyone have a similar circumstance?

> > >

> >

>

[Guest guest]

My son would never do sign language as he was tactile defensive and the

therapist could not touch his hands. Also he would not mimic what you should

him. However he picked up on the picture exchange within the first few days of

doing it. I watched a movie on lifetime movie network called Miracle Run a true

story about a moms struggle to get her two autistic twin boys educated and that

is what made me think of using the picture exchange system. Our children have a

voice and they need to be heard. They have opinions and we cannot understand

their frustrations if they do not have a way to communicated them. WE have to

speak for the child that cannot speak and make people listen to them. Cyndi B

> >

> > You have received some great ideas from the group. Sara mentioned a

> > calendar and a list to help others re her son and pointed out

> > an important point and that is that behavior is communication. I wonder

> > how your step-son communicates. Our son is hearing impaired and non verbal.

> > We use and where lives and goes to workshop they use a calendar with

> > pictures so he knows when things are happening. This calendar is to be

> > reviewed and i.e. days counted off when will be coming on a home visit,

> > going to activities or doctor appts. also uses sign language.

> >

> >

> >

> > Check out Hodgdon has a great site for using Visual Strategies for

> > improving communication http://lindahodgdon.com/ Tom Pomeranz Ed D website

> > for some helpful information on behavior.

> > http://www.universallifestiles.com/pomeranz.html or Barbara Doyle's

> > websites http://www.barbaradoyle.com/handouts.html and

> > http://www.asdatoz.com/ for many handouts on behavior and communication.

> >

> >

> >

> > Louise, Mom to 48

> >

> >

> >

> >

> >

> >

> >

> > <http://groups.yahoo.com/group//message/107978;_ylc=X3oDMTJyOWo0OG5

> > wBF9TAzk3MzU5NzE1BGdycElkAzQxMDMwNQRncnBzcElkAzE3MDUwMTM0ODEEbXNnSWQDMTA3OTc

> > 4BHNlYwNkbXNnBHNsawN2bXNnBHN0aW1lAzEyOTI5MzczNzU-> Just found this group

> >

> >

> > Posted by: " sickofthiscrap "

> > <mailto:mary.elrod@?Subject=%20Re%3A%20Just%20found%20this%20group>

> > mary.elrod@ <http://profiles.yahoo.com/mary.elrod> mary.elrod

> >

> >

> > Mon Dec 20, 2010 2:45 pm (PST)

> >

> >

> > Anyone out there with a teen-aged DS ASD? I have a step-son who is only with

> > me and his dad during school holidays. I wonder if there is any hope of him

> > developing any further. Non-verbal and often belligerant, increasingly so

> > lately. Are these kids supposed to be terrors? I've only been involved with

> > him for about a year. Anyone have a similar circumstance?

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi darell brooks,

My child, DJ is 15 & has used a combination of things to communicate. When he

was a toddler I taught him sign language & his visiting therapist from the area

school for the deaf introduced him to the PECS system. When he enter

kindergarden, I requested that he have use of communication devices as well as

the use of sign plus PECS.

This continued throughout elementry school until 5th grade. As a result, DJ was

exposed to a variety of ways to communicate. By the end of 5th grade he was

lugging around several communication books (PECS), was proficient in the use of

sign within his developmental abilities & had increased his verbalizations

(hundreds of words).

Because he had " outgrown " most of the devices used in the classroom, I requested

that he be tested by both the speech therapist and the district's assistive

technology expert to determine which device would be the best fit for him. This

was done so that the school could order a device tailored specifically for DJ's

needs & strengths.

I (nicely) pushed for this because DJ needed a way to easily communicate to the

world & be understood & because I always held the long term view. It was fine &

good that he had expanded his spoken vocabulary however the words were not

understood by others not trained. Few people in the typical world know sign

language. There are few opportunities in the typical world where others have

the time & patience to wait for someone to make a sentence out of pec pictures

or words (ie McD's, etc).

And I was stunned to picture DJ carrying around either some huge notebook or

several small notebooks. I wanted & still want DJ to have the means to be

spontaneous in his interactions with this world.

Due to re-districting, DJ moved to another school in the county for 5th grade.

As a result, the ball was dropped on the ordering of a personalized

communication device until the spring IEP in 5th grade.

By the time school ended, DJ had the evals & a device ordered thru DynaVox (our

county's seemingly preferred choice of vendors). He used this device in school,

on school community outings & it came home everyday year round. Until it ceased

to work in 8th grade.

So a new device was ordered that fit his most current needs & strengths.

Because DJ had started writing (everywhere) I wanted something that would either

print or say what he typed. A new device had just been released that did both

voice output, printed words & also had overlays (push button with picture or

symbol)that could be programmed. Cool device that has now been discontinued.

It stopped working completely during this past summer between 9th & 10th grade,

however when it did work DJ was able to easily use it to communicate with

others.

Ahem. As my story so far illustrates, I personally feel that any communication

device should be obtained ONLY through school on their dime until a child

graduates. Not only does a child have the potential to outgrow a device but any

bugs in the device can be problematic. Devices also can become obsolete meaning

difficulty obtaining any needed repairs or parts. That is bad news for a

parent's budget as most devices can be pricey.

So first, do not pay for one. Second, formally request an " addendum to the IEP "

meeting (or wait until your next IEP which I do not recommend). At this meeting

request an indepth ACD eval be conducted by the school and make sure to give a

TIMEFRAME for this to be completed. It is usually understood that after the

eval, another meeting will be held to discuss options. However, just to make

sure I suggest that this is requested & documented.

After the eval, a meeting will be held that goes over the results. At this

meeting you will want to be prepared to tell them what you would like a device

be able to do for your child. Keep in mind that you will use the device as

well, so make it clear how tech enabled you are & whether you will need

training.

In the addendum to the IEP you will want the following documented:

a)Timeframe for eval & procurement of a device. Example being no later than

12/21/2010 an eval will be completed & device ordered

b)Document that ongoing training be provided to all staff & parents on the use

of the device or any alternative communication

c)Document on the IEP that the device will go home daily, on weekends & all

holidays & summer break

d) Document on the IEP how the device or alternative communication will be

implemented within goals & objectives & how often in the school environment

Although I did not talk about specific devices, I hope this helps you

navigate to where you want to go. There are ALOT of devices out there so I am

confident that you will find the one that best fits your child.

One last comment: Any school that receives federal monies in any form has to

provide assistive technology. There are specific federal laws/Acts that mandate

this. Do not let anyone tell you otherwise.

Kris

>

> Hi has anyone got good experiences to share about communication devices?  my

son

> has ds and asd he is 14. He can talk alittle but perfers not to talk very

much.

> He did get a  expert evaluation for his IEP but they say all the

> reccommendations are just suggestions   I'm so fustrated with this lousy

school.

> He has a para educator that sits on the edge of her seat waiting for him to

make

> a sound so she can take him out of inclusion and retreat to the " special "

> education room where other people are non verbal and have ticks the Darell has

> learned to immatate perfectly.

>

>

>

>

>

[Guest guest]

Our kids do NOT accept changes very well.....it is important to keep them in

a routine.....when making changes, it takes awhile for them to adapt.

-- Just found this group

Anyone out there with a teen-aged DS ASD? I have a step-son who is only with

me and his dad during school holidays. I wonder if there is any hope of him

developing any further. Non-verbal and often belligerant, increasingly so

lately. Are these kids supposed to be terrors? I've only been involved with

him for about a year. Anyone have a similar circumstance?