Re: Re: behaviors

[Guest guest]

Audrey, is now 12, and his behavior/social skills were always my biggest

concern in the schoolroom setting. I took him out of 1 school that would sit

him in the hall because he couldn't sit still/quiet. That's a great way for

him to learn his schooling and feeling good about himself! Yeah right, we

were outa there in a flash. We put him in a school that emphasizes

relationships, they have a circle after recess where they talk about

problems/ appreciations etc. Now he is in a new school just for 6th grade,

which I really worried about as he started knowing no one. What I did was go

into the classroom the 1st day and talk about . The teacher wanted me to

explain his problems--WRONG! I just sat there and said, " people come in all

shapes, sizes, etc. and we're all different but special and how boring it

would be if we were all identical robots " etc, and I named the things they

have in common with , like that he love Pokemon, Nintendo, dogs, etc and

that he is such a great and loyal friend. and so on for about 20 mins. then

at the end I saidk " Oh by the way, he doesn't hear in 1 ear, so don't whisper

to him on the right. " that was ALL I said about his differences. Well, that

broke the ice, and he is now very popular, well liked, with lots of great

friends who bring him Pokemon cards, invite him for lunch, etc and really

take care of him, rub his back when he can't sit still etc. GOOD LUCK!

Barbra M

[Guest guest]

Audrey,

I know that there has been a definite pattern of " behaviors " that

worsen for out children at about the age you describe. My son Mark now 16

went through a dreadful time. We had specialists through the school help us

with a plan but we did finally end up also using medications and it helped

him a lot. I think you should ask for assistance from a behavior specialist

who could possible contact a deaf-blind consultant for you. These times can

be emotionally difficult for everyone. I can remember having the exact same

feelings you describe " wanting others to know the witty, fun child I know! "

Does she have an aide or interpreter in the room with her? This also helped

Mark. It is a most trying time and it lasts until a solution is found and

addressed. V.

[Guest guest]

In a message dated 2/9/2000 1:23:51 PM Central Standard Time,

AUD0805@... writes:

<< I was wondering how you helped your children accept their

disabilities. I know there is no recipe to do this for our children. I

just don't know where else to turn. The school psychologists are used to

treating children with a specific behavioral disorder (ADD,autism etc) But

when you come across CHARGE there are no books to tell us what we can do to

treat their behaviors. Each one is so different. I know this letter is

very long and I am sorry. I was just hoping another parent may have some

ideas on how to get started. Thanks so much.

Audrey Dwyer Mommy of 8, Meredith 6

(with CHARGE) and 5

Mount Sinai, New York

e-mail: AUD0805@... >>

Audrey,

I have a 5 year old son with Charge and the behaviors are definitely the next

'level' after the medical issues, at least for us. He actually is doing

quite well but with the combination of hearing and vision loss,his world is

much different than other kids and ours. We are constantly trying to find

ways to make him understand that there are fun things and interesting things

to investigate outside of the areas he can see and hear in. It is quite hard

work and he doesn't really 'interact' with the other kids in his class but he

is making improvements. He has started exploring other areas and the kids

all seem to want to play where he is and they hand him things to look at or

play with, etc. It seems that for the past several months his favorite area

of the classroom has been the 'house' area. He will sit in the kitchen area

and play.

I am apprehensive about moving him into kindergarten because I just haven't

seen a classroom that really fits for him. This month we are visiting

different schools and classrooms to see what is offered. I don't really have

any advice for you except to keep the vision and hearing problems in the

front of your mind because it has a profound impact on how our children learn.

Good luck,

Jacque

mom to Austin (5, CHaRgE) and 21 months

Wife to Steve

[Guest guest]

Audrey,

How is her communication? I have found with and many other

parents I have spoken with that communication problems are often the

source of behavior difficulties. It is hard for our kids to understand

the world and to develop social skills. That is one reason many of us

fight for inclusion because (1) it does provide our kids with lots of

good (most of the time) role models, and (2) it creates a world that is

more accepting of our kids as the regular ed kids become use to our

kids. The other thing to keep in mind is that our kids without CHARGE

can have horrible behavior problems too (I have one in his 2's, and so

am living it). But we are better able to communicate with them about

our expectations, and we know they will grow out of it. We fear it in

our kids with CHARGE (at least I do) because we don't know if we will be

able to correct it. Looking over nearly 11 years with , we have

seen behavior problems come and go, just as with the other 6 kids. We

respond in many ways the way we have with the others, except that we

have to work harder to make him understand, and he have to work harder

to create a living environment that reduces the opportunity for him to

misbehave. It's kind of like babyproofing, except you have to stay with

it a long time. He likes to go into our bedroom and throw the phone and

light on the floor. So we tend to keep the door shut. Or, we may

invite him in when one of us is in there, and we can let him explore

items, but we can control whether they get thrown.

I know it's a terrific challenge. We get really tired some time.

Tim Hartshorne, father of and a bunch of others

" Audrey C. Dwyer " wrote:

>

>

>

> My name is Audrey Dwyer. I have been part of this list for many years. I

> don't write much because our problems seem so small compared to what most

> of you go through. My daughter, Meredith, is 6 years old. She has CHARGE

> syndrome. She has colobomas and is legally blind in both eyes, she has

> pulmonary stenosis, Ebsteins anomaly, and 3 ASD (holes) in her heart as

> well. She has choanal atresia of her left nostril. She was born with

> kidney reflux and an enlarged bladder, but thank God she has outgrown both

> of them. She has no inner ear on the left side and is deaf in that ear,

> she has a mild hearing loss in her right ear. We have tried to have her

> atresia repaired but all three attempts were unsuccessful. We have decided

> to wait until she is older to try again. Her heart is watched carefully,

> but we do not anticipate needing surgery until her pre-teen years. It has

> not always been easy. The time has gone by so quickly that I can hardly

> believe all we have been through. While the medical issues are behind us

> for now, I find the behaviors becoming such a challenge. The medical

> issues seemed to have solutions--but behaviors are so difficult. Meredith

> attends regular school. She is in a self-contained setting and goes to

> regular ed-setting for math, art, gym, music, lunch and recess. I have

> fought for her to be there. I know she belongs here. But my problem is

> that her social skills are so poor. I don't know what to do for her. She

> loves the children, but she seems to alienate them with her behaviors.

> I've tried reasoning with her. She is such a funny, smart child. I want

> the other children to appreciate her for what she is. She just can't seem

> to help herself. She'll just behave badly. She knows the difference

> between right and wrong, but can't seem to pick the right one. I was

> thinking of a behavioral therapist, but honestly I don't know where to

> begin. CHARGE children are so unique with their behaviors and thinking

> patterns. I know there are a few parents with older CHARGE children on

> this list. I was wondering how you helped your children accept their

> disabilities. I know there is no recipe to do this for our children. I

> just don't know where else to turn. The school psychologists are used to

> treating children with a specific behavioral disorder (ADD,autism etc) But

> when you come across CHARGE there are no books to tell us what we can do to

> treat their behaviors. Each one is so different. I know this letter is

> very long and I am sorry. I was just hoping another parent may have some

> ideas on how to get started. Thanks so much.

> Audrey Dwyer Mommy of 8, Meredith 6

> (with CHARGE) and 5

> Mount Sinai, New York

> e-mail: AUD0805@...

>

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

[Guest guest]

Hello Audrey,

You sound like a wonderful family and a very supportive Mom. Our

daughter,, is 15 and has a behavior-based after school home program

through a behavioral group in Marin County...I chose this group because one

of the behaviorist has a deaf-blind background and knows sign etc. She had

also worked with a young man who is deaf-blind who is in supported living.

This group also supports students in school with all types of disabilities

in inclusive settings. I don't exactly know how to help you research this

but perhaps your state DB project would have a clue or know someone in your

area.

All the best to you and yours in finding the best program...also might ask

at HKNC which is geographically alot closer to you than California!

Take care,

Jackie Kenley, Mom to almost 21, nah almost 17 and the

CHARGE lady almost 15!!

[Guest guest]

Audrey,

When a specialist says that a child needs more help than the school can

give her, then they have set themselves up to provide that help at

school district expense. The school, in other words, is required by law

to provide the help any child needs. If there is a program somewhere

that can provide it, while the local school cannot, then the local

school must pay to have it provided. However, I also don't fully

believe that she needs more help than they can provide, but more likely

than they want to provide. But their enthusiasm for providing it

locally would probably go up a notch if you found an expensive private

program somewhere else.

Even though Meri is completely verbal, she obviously has some

communication difficulties. How easy is it for her to make her wishes

known to other people, and how often does she get to make her own

choices? Those are key questions to consider. Sometimes kids with

disabilities are put in a really regimented program that limits their

ability to make choices. That in itself can cause behavior problems.

Look for sources of frustration.

Good luck. You are right that this is challenging.

Tim Hartshorne, father of

" Audrey C. Dwyer " wrote:

>

>

>

> Barbra M. It sounds like you did everything right with . Meri needs

> to have her 1-1 aide with her and it seems like that is what is so very

> frustrating to her. Her aide isn't a specialist--just a regular school

> aide. She's worked with an autistic child but I guess she didn't have to

> do much for her. I love that you focused on all of 's positives. I

> find that a challenge with the teachers to make sure they see all of Meris

> wonderful characteristics.

>

> Tim, Meredith is completely verbal. That's what makes this so challenging.

> She can tell us what's wrong but she chooses not to? I think. I really

> wonder sometimes though, what it is that keeps her from making the right

> choice. I guess we all make the wrong choices sometimes--but I think you

> know what I mean. Our school social worker said she thinks Meri needs more

> help than the school can give her.

>

> Thank you for all understanding. Sometimes being a CHARGE parent is a

> lonely place to be--so rewarding but so hard. Thanks

> Audrey Dwyer Mommy of 8, Meredith 6

> (with CHARGE) and 5

> Mount Sinai, New York

> e-mail: AUD0805@...

>

> ----------

> > From: CHARGEonelist

> > To: CHARGEonelist

> > Subject: Digest Number 788

> > Date: Thursday, February 10, 2000 3:28 PM

> >

> >

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

[Guest guest]

My husband often left the water running, especially in the bathrooms. Would

take things out of the freezer and let them set out (we have an extra

refrigerator in the laundry room area, and he would get ice cream or something

out and then just leave it set or just put it back in the refrigerator instead

of the freezer). I didn't go in there all the time and it would be too late for

some things when I found them. He put dirty dishes in the oven, sometimes in

the cupboards, couldn't make coffee or use the microwave either. I have a bread

machine and use mixes, and he often would put the mix in and start it when he

was still pretty cognizant, but he got so he couldn't even do that. He also

sliced the bread after it was done and was proud of his nice even slices; then

he no longer could to that.

One of the problems we had for a long time was his leaving the garage door open

when he went to work. Many times, I came home and found it wide open. We

didn't lock the door between the garage and the house, and I don't know how we

kept from getting robbed. However, I was guilty of that the other night, as

someone bought a piece of furniture from me, and we took it out of the garage,

but then they came in the front door to the house to pay. I forgot to shut the

garage door after they went out the front door. I had just gone to bed about

midnight and just got to sleep, and the phone rang. Scared me to death, but I

couldn't get to the opposite side of the bed to answer it before it went to

messages. I couldn't read the caller ID as the light for it must have burned

out, so I had to turn on the lights to read it. It was a neighbor, who had come

home late, and I knew as soon as I saw her name that I had forgotten to shut the

door. I called her back,

and she was so worried, as I didn't answer the phone, and she was about to call

the police. But, he did it quite a bit and would always say he shut it. That

was the scary part, as occasionally, it was after dark when he forgot to shut

it.

June

>

> Subject: Re: behaviors

> To: LBDcaregivers

> Date: Monday, July 21, 2008, 10:41 AM

> Kathy, In reference to letting the water running, my husband

> has done

> that numerous times. I even wondered if it was me that

> left it

> running at first, until I saw him walk away and it was

> still running.

> I really doubt my husband realized he had done that.

> Lorraine

> husband, 57 Diagnosed with PD 2002, has many LBD symptoms

>

>

> >

> >

> >

> > I have a few questions and would like everyone's

> opinion.

> >

> > My mom is the main caregiver to my dad, we go over

> their house quite

> a bit, myself, sister and brother., but it still is my mom

> that is the

> main caregiver. She doesn't like to ask for help (she

> feels she is

> inconvieniencing us, we have our own life etc) she did

> finally get

> some help through VA. She gets respite and someone to come

> in and

> bath him. But the problem is it seems like when my mom

> gets out of

> the house my dad gets upsets and I swear he retaliates in

> some way.

> Last time she went out he pee'd all over the hallway

> just outside the

> bathroom. Last night she went to the movies and dinner and

> he left

> the water on all night in the kitchen sink and it flooded

> the

> kitchen. When you ask him why he did it, he tells you it

> wasn't him.

> THis morning after the incident with the kitchen my mom

> called my

> brother and he came over with my brother in law to fix it

> and my dad

> was agitated and wanted to know why all these people were

> there and he was

> > leaving. When he tried to leave my mom tried to stop

> him and he

> acted like he was going to hit her. My brother in law

> jumped in front

> of her and he said he was going to hit him.

> >

> > My mom feels these things have gotten worse since she

> started having

> these respite care workers come in. I know this is taking

> a toll on

> my mom and I am not sure what to do.

> >

> > Has anyone else had this problem with their loved one.

> When you go

> out they get angry at you? When she comes home you can

> watch him

> and see that he is pouting.

> >

> > Also a question to the caregiver ... Do you feel like

> you have to

> hold on as long as you can taking care of your husband or

> wife because

> you feel like you are letting your kids down, or that it

> might upset

> them.

> >

> > Just wondering if this is what my mom is doing. I

> know I should

> talk to her about this and asure her that she needs to do

> what she

> needs to do.

> >

> > Kathy

> >

> >