RE: Tessy

[Guest guest]

Hi Tessy,

Sorry just getting back with you. Trying to shake off this nasty

sinus infection. Out and about when I feel strong purchasing

Christmas gifts taking advantage of sale prices and I'm so glad that

this year I'm finding alot of gifts for , in the past its

always been hard. I'm also getting ready for a trip out to Tenn.

next week.

First of all how do you feel writing this message? Nice, huh? Your

dh is certainly correct sharing when others walk in the same shoe

and of course when is it nice to share about our stories? This list

definitley could understand exactly what you've written about Brad.

Boy! can we relate.

These are similar issues that we also deal with like Brad:

Oh boy! My son have also had lots of ear infections & upper

respiratory infection, had tubes on and off when he was younger.

My son has been evaluated by an OT, trained with Sensory Integration

and he is and has been desentized for alot of sensory processory

disorders. I noticed that I'll have to take him back with his OT as

this was put on halt due to focusing on his ABA/VB Therapy which he

has made great gains of process. Some Speech therapist have been

unable to work with him 1:1 due to him not being compliant but

behavior therapist could get him to sit still, vocalize, interact,

imitate, match items, colors, which he could not do in the past and

the therapist also include Sensory & motor activities to work with

his motor skills.

My son would hit anyone near him due to the other person being loud,

auditory defensive, the audiologist has tested his hearing and all

was fine and sometimes he seems deaf like. He will also hit because

he is tactile defensive, can not stand to be touched, dislikes

touching certain things,etc. Not able to be barefoot the ground was

too sensitive, now he can't wait to remove his shoes and will not

wear them unless we are going out.

Lights must be dimmed or totally out but this has decreased some.

Should of seen me always rushing during cooking or washing dishes as

it turned out as a Disco room, lights were going on and off.

He use to a very picky eater due to the texture or smell of the

food, we did the Oral Beckman Therapy shown by the OT. Haircuts were

a battle now he is able to get one but still dislikes the water

sprayed and the buzzer, hair falling off in front of him and

depending on certain days the touch of the hairdresser. Our phones

are on the lowest ringer but boy do they irritate his ears and he

just covers them and makes some sounds like it hurts him. I have to

continue working with him when he craves for any sensory input with

sensory & motor activities at home and school.

My son has daily bowel movements now. I keep a major toileting chart

still so that I could follow up when he has urinated or bowel

movement as he sometimes use to hold it for days and ended up in ER.

His teacher realized how important this is as she felt awful not

following my request last school year and now she notices the

differences when he is constipated his behavior escalates and if I

see that it has been more than 2 days, I give him Miralx. He is

toilet trained at about the age of 13 y/o, but still needs to learn

to initate to let us know when he has to go to the restroom which

we're still working on. I believe my son's developmental stages are

based around one of my neices ages between 3 to 4 y/o. My son could

also stay in front of a TV if I let him and rather watch his DVD's

or videos. Slowly has graduated watching the Disney channel. My son

does not like to use the computer or play any electronic games. Same

thing if I would like for him to learn or get him to do something I

must have a good motivation reinforcer. My son stims and rocks and

does a running man dance when overstimulated or needs a item of the

week which he becomes attached to and this has decreased alot of his

behavior during our outings entering store, restaurants, just about

any public places. At the end of last year we ended up purchasing

our Honda Odessey and its been the best investment along with his

portable DVD player when traveling. My son has peripheral(sp?)vision

and during the drives just like lightening speed on the highway this

would cause him to overstimulate, plus when I would play certain

music this too would rock our car on the road. We've have a

Handicapped placecard due to him being a runner or meltdowns (which

has decreased alot)and for his safety and this has cut down alot of

stress for him and us.

There is always so much to write about our kids and my son has come

a long way within these 3 years and I never would of imagine that he

could learn or do things. He would be very aggressive as he is non-

verbal and when he does vocalize it will be one single word and some

days he can be receptive with 3 words in a sentence when he wants

to. Its all structure and break down steps and needs visual

strategies for him but at least I have answers as he is older and

stronger. All withim time its choosing which challenge to work with.

This is SOME of 's issues.

If Brad is 14 y/o, is his teacher working on the toileting with you?

Does Brad understand the feelness of being wet? This was one of

's issues, he did not understand the concept of feeling wet.

Is he being scheduled trained for now? This is good that Brad will

urinate in the toilet, the BM's will I guess this is when he is

ready to understand in the toilet. use to always do it in the

tub during his bathing and I would have to use plastic gloves and

used it as a visual strategy that " poop goes in the toilet " . The

warm water though calmed his stomach muscles so maybe this could be

one of Brad's problem where it might irritate him and afraid to

release in the toilet just yet and the pull-ups gives him comfort

releasing but then discomfort with the mess inside his pull-ups and

yep its a mess afterwards, especially while taking prunes to help,

but we try anything so I hear ya. I'll stop hear as you could see

and many here know that I tend to write and write. ; )Take care.

Irma,16,DS/ASD

[Guest guest]

Hi Tessy,

We also live in the Seattle area and we were referred by the speech clinic

at Children's to the Autism clinic there with a Dr. Cowan. He is the

one who diagnosed Hannah with Autism. Unfortunately, the help stopped there as

he gave me no direction as to what in the world do we do now?

So I am getting paperwork together to visit a multi-disciplinary team at

the Center for Human Development and Disability (CHDD) at the University of WA.

a (Drew 13 Tourette's syndrome, OCD, ADD; Marissa 9, Hannah 7 DS/Aut)

[Guest guest]

Louise,

Thank you for sending me the website about the timer. One other mother

suggested a timer also. I think I will give it a try. Brad is usually happy

and content if he is getting his way. Boy I wish I could get my way all the

time. Course we know that is not the way it is. You have to always do things

you dont want to do. I just need somehow to get threw to him like you have your

son and find a middle ground. He wants to be at home or alone most of the

time. I know he needs to be pushed to do things so his world and mine doesnt

become to small but as you said when they decide they dont want to do something

they are stubborn like a mule.

As far as the schools I dont understand why teachers and aides in special ed are

not required to go through so many hours of training every year so they can

learn how to teach children with different disabilities. I have found it is

usually not the teachers who are unwilling to participate in something like this

but the administration who is unwilling to enforce it or fund it. It just seems

to me it would make it easier for everybody involved.

Is in a group home? And if he is how does he like it? I have often

wondered how it will be making this transition when Brad is older.

Tessy

Louise & Andy wrote:

Hi Tessy, though I would jump in here with a couple comments. Our son

is 42 DS, hearing impaired/uses sign, and last year diagnosed with

autism. He has been in residence for the past 12 years and we are in

the process of changing agencies for his residence. I feel so sad as I

listen to all the families have to go through with the school districts

and lack of training in some of them. I also rejoice when I hear the

good things that help in other districts. We see this also in the

agencies when they are adults as well. has seen a lot of aggressive

behaviors and many of them he has learned to mimic. I think one of the

biggest things for us is to continue to learn all we can to help .

Of course when I drag my dh along to meetings he says he's not the one

who should be hearing the program but the staff. So true.

It does make it difficult when the guys/gals grow bigger. is 4'6 " ,

145 and very strong, small but mighty. At home luckily we don't have

the aggressive behavior that they do in the residence/workshop but the

potential is there, we are able to defuse it before he really gets

upset. It's more relaxed and not a lot of demands and people to deal

with on home visits. If we want him to go somewhere or do something we

first plant the idea, many times he will say no, we walk away and let

him decide on his own time. Most of the time he will change his mind

and get ready to go or do what requested. But if he doesn't want to do

something nothing moves him.

In an evaluation this year it was recommended to use the Time Timer to

help know when something he wants to do is going to happen. Info on

this can be found at http://www.timetimer.com/home.htm This works very

well. When we know we are going to go to say a movie and we want

to get dressed we will set the Timer, it is a visual clock, no alarm but

it shows red, when the red is gone it is time to get ready. To start

with I bought one for workshop as his supervisor there is so receptive

to doing things to help , she said it helps there to let him know

when he goes on break, lunch, or time he could draw, things he wants. I

have one at home and it has worked well here. I never gave one to the

residence as they had more difficulty in using something like this. I

will be giving one to the new house as they are very receptive to do

things.

Louise

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[Guest guest]

Tessy,

I think you can find some interesting information from this site:

http://www.asdatoz.com/aboutus.html

Barbara Doyle did an evaluation for last Feb. She and her sister

have a new book out On ASD from A to Z. Irma heard speak recently

so she could tell us more. On the website check out the About ASD link.

There you will find 20 topics, check out the Can't vs. Won't article.

From 's evaluation Barbara commented: " When you use terms like

stubborn, spoiled and unmotivated that hurts because it changes the way

you are going to respond. But if you say you are going to figure what

is wrong and try to help him, you are being more creative. You can then

come up with an intervention for a guy who is really seriously disabled.

Some words staff have used to describe in print and in person are

stubborn, selfish, mean, spoiled, he steals. Staff need to reconsider

the way they are viewing this multiply disabled man. When you use these

types of descriptions, you may want to punish instead of teach. Assume

he can't (instead of that he won't) and then augment. Why can't he work

right now? makes sense from his point of view. "

From Barbara and other professionals I have heard unless it is a safety

issue letting them have what they want at the moment is OK. We need to

understand what is going on with the individual, some of which is

collecting data, and then when you have an idea of why the person is

doing something you can develop teaching strategies to help them change

the behavior.

is now 42 and has lived in a group home for 12 years. was our

third child of 6, 4 boys, 2 girls. We also have 7 grandchildren ages

16-3. We are currently in the process of changing from one

agencies group home to another because of programmatic issues. We feel

the new agency will be able to better meet his behavioral needs as they

have a Behavior Dept. with a Psychologist and Behavioral Analyst. For

the past two years we have contracted with the agency for behavioral

services as the agency where he lives and works does not have this

department. At his current agency we would have a psychologist at the

annual staffing but in-between no support.

If there are any other questions about residential or workshop or

anything else don't hesitate to ask. Louise

[Guest guest]

In a message dated 11/17/2004 1:49:34 PM Eastern Standard Time,

bvbj1413@... writes:

> As far as the schools I dont understand why teachers and aides in special

> ed are not required to go through so many hours of training every year so they

> can learn how to teach children with different disabilities.

Hi Tessy,

The teachers are required to attend training throughout the year. They are

also taught to teach all learners at various levels. IDEA and NCLB requires

teachers to be qualified. You have a right to ask for any teachers credentials

and

have any teacher replaced or sent for training that isn't qualified. If your

school district refuses you can appeal to the state dept of education to

investigate and they will. Nothing will change if you don't speak up.

Charlyne

Mom to Zeb 11 DS/OCD/ASD?