Re: kim - Any more ideas- labels

[Guest guest]

Vicky,

I have been thinking about this all night. is just entering the

school system. He is at a pivotal point. How much of what happens with

CHARGE is strictly delayed neurodevelopment and will improve with time no

matter what we do? How much of it can we influence by appropriate

interventions and understanding of the process?

On the labels. I think my concern is that most labels refer to something

that is permanent. It is a condition that doesn't go away. If the child is

mentally retarded, that refers to their ability to process and understand

information and it remains at a fairly consistent level. If the child has

autism that is permanent, the child may show improvements based on the

interventions and treatments, but the child remains autistic.

Our children have CHARGE. They may " function in the moderate mentally

retarded range, due to the impact of their combined vision and hearing

loss, " but they are not actually mentally retarded (some may be, I would

venture to say that most are not). As they are able to receive more

information their range of function improves. Also with our children,

especially when young, much of the assessment for mental retardation

involves how well the child performs on activities of daily living and how

they respond to auditory and visual input. Since most of our children have

a physical reason why they don't respond to the sensory input this does not

mean the brain is limited in understanding information. Since many have

g-tubes or other feeding difficulties, not using a fork or holding the

bottle for them self does not mean their brains don't work - it simply means

they have had no reason to develop those skills. So Vicky you are right, on

paper can appear to be very low functioning, but it does not mean the

same thing as when those same numbers are found in a child without vision

and hearing impairment and feeding difficulties. The key point is with our

kids it is CHANGEABLE. DO not let a label pigeon hole them into a place

where it is expected they will stay. My view on the mentally retarded label

is slightly different than Bonnie's although my concerns are similar. Dylan

does FUNCTION in the moderate mentally retarded range. If he does not

receive the services he needs he will continue to function there or even

lower. With appropriate services he will improve and his scores will change

showing he no longer FUNCTIONS in that level. In our situation, without the

MMR label Dylan would lose his health insurance and all of his therapies

(unless of course I let them change it to autism, which I won't). Without

his therapies and without insurance I don't think I can help him make the

improvements I know he is capable of. It is a risk I take. Since he is not

in the public school system and his team understands that he CAN LEARN I am

okay with the risk. Not ideal, but what is working for us now. I may have

to fight like crazy to fix impressions later, but I am trusting that Dylan's

functioning will take care of much of that problem.

Okay now on to the autism label. I don't know how much you have followed

over the years about the CHARGE plus autism or the autistic-like as part of

CHARGE debate over the years. Do you have the American Journal of Medical

Genetics from march 2005? If not, get one. You need to read some of these

articles BEFORE the IFSP. I can e-mail you some of the articles that

particularly pertain.

Between ages birth through 4, Dylan had delayed development, but he did play

appropriately with toys, looked at books, did puzzles and so on. His

development was spotty in that there were things he did not learn at all,

but then he jumped to a higher level skill. This makes sense due to his

sensory impairments. On the other hand he had never had the same social

interactions or interest in communicating that other kids did. As he

entered preschool we fully expected he would learn to sign and socialize.

He was in the preschool for Deaf kids and his teacher was willing to learn

all she could about his combined vision and hearing loss. His preschool was

in the same building as our state Deafblind Project and I consulted for that

project as Parent Liaison - he had the most active involvement of deafblind

specialists all along the way, with the ability of his teachers to pop in

and ask a question if they had trouble implementing a recommendation or

wanted to know where to go next.

But at age 4, Dylan changed. He no longer looked at books, he no longer

played with toys appropriately, he spun the wheels, he threw them, he spun

them in front of his eye and so on. He found the basting brush in the

kitchen and it became his thing, having it in his hands (except for at

school) at all times either just holding it or spinning it in his mouth. As

he got older he would take these brushes and very carefully line them up by

length and width, but he would not do similar things with other items. His

flash cards from the Baby Einstein videos, he would take them out

systematically look at them, orient them to the proper up and down

placement, then line it up in a row. He began to have more frantic states.

Most importantly he did not seem to have that internal protective drive to

seek parental approval, which means he did not have the basis needed for

typical social interactions. He was internally driven to meet his own needs

and as much as he did have relationship with us, our interactions were

driven by his needs, we were tools to help him meet his needs. He did not

watch the dog play, he " played " with his siblings by having them sit in

chairs in a row, then guiding them on when to change places - his version of

musical chairs. He did learn to rough house with them and to play chase as

long as he was the one being chased. If you tried to play catch, he threw

the ball away from the people. His sleep was inconsistent at best and we

learned to keep most things up high, because he would most likely throw it

(I lost one lap top that way.) He had no formal language skills, verbal or

sign. On the assessment scales he was without a doubt autistic.

BUT just looking at him, he did not seem the same as other children with

autism. He did have more relationship with us for example. He did not have

the extreme sensory defensiveness. He did not rage when people entered his

space or he felt threatened. It is hard to explain, he still just seemed

like Dylan, but somehow the engagement with the world that we did have from

birth on, disappeared at around age 4.

Then to complicate it further, he had great understanding of the physical

world, his orientation and mobility skills are great. He seemed to have

such great visual function environmentally that it appeared like he saw

perfectly fine, so it was hard for people to understand why he needed

tactual sign and so on.

Age 7 is when we started the CVI interventions. Age 8 is when we started

HANDLE. Age 7 is when his first intervener came back into his life after a

3 year time away. Age 9 is when he finally got a teacher that " gets it " .

BUT looking at all of it, it appears to me that his visual engagement is the

key to the rest of his improvement!!!!!!! I think that up until age 4 I was

able to intuitively adapt his world to accommodate for how he saw best. BUT

once he improved to a certain level, what I did was not enough to help him

understand moving hands, people's faces, things in the distance, complex

visual information, information that was 2 dimensional (like print) and so

on. I needed help, which is when we paid to have Dr. Roman come

and do her CVI evaluation with Dylan.

Even with the improved visual function, neurologically Dylan was losing

ground, the frantic behaviors increased including slapping people's faces as

play, more throwing, spinning in circles, and progressed to having tics in

multiple muscle groups at one time or if not ticing then uncontrollable

excessive motor behavior. It was then that we added HANDLE to try and cope

with the neurological quirks without resorting to meds at such a young age

and when we didn't really understand what was causing it all.

Last year Dylan began to watch kids his size, he would walk into the middle

of the group at Sunday School and start dancing with them. He began to

visually attend to signed language (especially if it was done after tactual

sign, but even when it was purely visual), he seemed to get that this was

important. He learned to understand and follow many visually signed

commands - ones that had been part of his routine for years, and had

definite meaning for him.

This year (age 9) he is PART OF THE GROUP. He seeks out social

interactions. His peers are blind and visually impaired, they are learning

to interact with Dylan like he is learning to interact with them. The huge

jump came this week when in his skill center time, three Deaf boys became

interested in Dylan's bolus and Dylan was very interested in watching their

back and forth signing about it. They asked if he was going to lunch. His

intervener asked if they would like to walk with him on the way over. They

said yes, so one boy on each side, holding his hand, and one boy walking

behind with his hand on Dylan's back. The part that was huge is this

interaction was not set up by the adults, but was driven by the mutual

interest of the children. Dylan and a friend now " read " together and on it

goes. In addition his receptive language skills have exploded and his

expressive skills are just emerging. Within the last week he seems to have

gotten that he can sign back. The way he stands, the way he walks, and the

way his eyes focus on the world - he no longer appears to be AUTISTIC.

If he truly had autism, I would find it hard to believe he could have

improved this much.

Then lastly I still think that structure influences function. Even with all

this improvement, I can feel the change in Dylan's body before the changes

in function appear. Currently he is leaning more towards the frantic end of

things and he had that neuro spell. His body is stiff as a board when

picked up, he lies down with his body in a certain bend, I can feel the lump

on the back of his head. The best part is we have not lost his eyes. He is

still engaged and he will see Dr. s and will improve.

So back to - the question that burns inside of me is can we do

anything that will help get that engaged look in 's eyes

earlier????????? If I were rich, I would ask to fly out and evaluate him,

work with the team, and follow him over time and document the path, but I am

not, so we will just have to talk together and brainstorm ideas for where

you are at certain times and go from there.

As far as labels, I would allow that he does appear autistic-like as a part

of his CHARGE syndrome, but that this is fully expected to disappear as he

receives appropriate interventions and learns to make sense of the auditory

and visual information that he is able to receive. When Dylan moved to

elementary from the preschool building we chose school for the blind,

instead of school for the deaf. Not because I didn't want him with his deaf

peers, but because he did not have the skills necessary to learn in that

visual environment. He needed more time to learn the foundational blocks of

communication and socialization before making that transition. BUT he still

needed people who could sign at a toddler or preschool level and who were

willing to do tactual sign.

And finally without a 1:1 assistant, trained in working with a child with

combined vision and hearing loss and CHARGE, he would have been in " lala

land " at school all of these years and he would not have learned anything.

Even with the autistic-like period of time, he still did learn and improve

during those years, it was just very slow in some areas, without the 1:1, I

think he would have been a behavioral nightmare simply because there would

have been no one to understand how he learns.

I am sorry this is so long, but I hope it is useful as you prepare for the

IFSP. (be glad you weren't the one spending over an hour writing it.) Also

have you read Judith's book, " The Fabric of Autism " ?

Kim

> Vicky,

>

> And everyone else, I just have to respond. For the cognitive functioning and

> autistic like behavior terms, whatever you do don't let anyone put those

> labels on your child so soon. For goodness sake, he's only 3! If I had let

> " specialists " put " their " labels on Patty, oh my, I know she would have become

> the

> label they put on her, and they tried many.

>

> Keep only deaf/blind, and always and forever write and say CHARGE Syndrome

> throughout his life. There are not really many placements that you can find

> which will have all the appropriate services and therapies specifically for

> him.

> They will have to develop them though. You are right in all he will need.

> Then you work as a team to build them.

>

> Do you have the CHARGE Manual? I think you should get one and copy many

> things in it to give out to whomever you are dealing with at the time.

>

> (Kim, great as always)

>

>

>

>

>

>

> Bonnie, mom to a 23, Patty CHARGE 21, and wife to

>

>

>

[Guest guest]

Kim --

Dylan's story always absolutely fascinates me. The way you have seen into his

mind and can explain what you understand about him... well... there just aren't

words to describe it. I love to read about it and I gain understanding about

Aubrie and others by sharing your understanding of Dylan.

The image of him walking to lunch with his 3 new friends -- awesome!

Michele Westmaas

mom to Aubrie 7 yrs CHaRgE and 13 yrs, wife to DJ

[Guest guest]

My boss commented today that " people are now real to Dylan " . It really

stuck me, because he does not pretend play, he doesn't do activities just

because - they have to be meaningful to him, and he appears so oblivious to

things that one would think he " saw " even to the point of not " seeing " me

when I show up in a place I usually am not. Maybe I was not real to him in

that setting. What an interesting perspective.

Kim

>

> Kim --

>

> Dylan's story always absolutely fascinates me. The way you have seen into his

> mind and can explain what you understand about him... well... there just

> aren't words to describe it. I love to read about it and I gain understanding

> about Aubrie and others by sharing your understanding of Dylan.

>

>

>

> The image of him walking to lunch with his 3 new friends -- awesome!

>

>

>

>

>

> Michele Westmaas

> mom to Aubrie 7 yrs CHaRgE and 13 yrs, wife to DJ

>

>

[Guest guest]

Kim,

I just loved your very long response to Vicky. It is so well and clearly

thought out and fantastically analytical at every stage. I love the depth

and clarity of your understanding of what goes on with Dylan. I smiled

broadly at his achievements and could visualise the struggles and successes.

It really does sound like your hard work is paying off. The scene with

Dylan walking with 3 of his peers was so powerful.

Oh, and what's more, you have saved me writing a much less eloquent response

to Vicky as you have more than said all I wanted to say. too would

have been described as autistic if she had been anywhere but the lovely

school she is at but now she is quite socially interactive, even if it is

mostly with adults. When she came home covered in bruises because she and a

peer had been running hand in hand in the playground and fallen over

together, I didn't know whether to be furious or ecstatic. The accident had

happened while she was being socially interactive. This little girl invited

her to her birthday party last week and she is no longer in her class. The

two girls have been quite friendly in an odd sort of way, one being more of

a lead for the other but an acceptable relationship to both. Autistic??? I

don't think so! I do like your description that a label should apply if it

remains constant, unchanged or unchangeable. It does take lots of hard work

to get the best out of our children but they definitely do progress so we

need to fight on and stand up to those who would make assumptions about

them.

Flo

[Guest guest]

Thanks Flo - Archive that one, so neither of us has to write it again. It

started just with my opinions, then I thought it was time to throw in the

medical language - it is not like we parents don't get exposed to all that

anyway. 2 hrs later you guys get hit with all that - oh my!

On the label - to clarify - I do not mean to imply that kids with true

autism don't learn and improve, but it is my opinion that at their core,

their body still experiences the world in a certain way, they remain

autistic, even when they have learned to manage it in different ways. In

the same way, our kids learn and change and mature, but at their core they

still have CHARGE. Dylan continues to have CHARGE, but he no longer appears

autistic in the way he did before. That is the difference and why I resist

the label of autism in our kids. (I do see value in borrowing from autism

strategies as needed.)

Kim

> I do like your description that a label should apply if it

> remains constant, unchanged or unchangeable

[Guest guest]

Kim,

Not that long ago (weeks, not months), Simon wrote an article for the UK

Cochlear Implanted Children's Support Group (CICS) newsletter about our

journey to deciding that would have a CI. Call me subjective but I

thought it ended really well by saying something to the effect that

is not just a deaf child but a child with CHARGE who is profoundly deaf (I

am sure he will correct me on this one). I really liked that he put CHARGE

at the centre of everything else, so I know exactly what you are saying.

Whatever other manifestations (apparent or otherwise) might be present, our

children have CHARGE and this is the reason they are as they are, that they

have the challenges they live with, that they struggle and cherish life as

they do; not because they have whatever a snapshot might determine but

because they have CHARGE.

Certainly I love the idea of borrowing strategies from other areas. Why

reinvent the wheel if you don not need to? As our children have such

complex needs, it does no harm to break them into their component parts in

order to learn from other specialisms, parents etc; as long as we always go

back to CHARGE since this is unique to them and we would do them a

dis-service if we lost touch with this.

Your post duly archived, you bet!

Flo

>

but at their core they still have CHARGE. Dylan continues to have CHARGE,

but he no longer appears autistic in the way he did before. That is the

difference and why I resist the label of autism in our kids. (I do see

value in borrowing from autism strategies as needed.)

>Kim

[Guest guest]

>

> is not just a deaf child but a child with CHARGE who is profoundly deaf

I like that description.

Thinking of Dylan as just Deaf did not work, thinking of him as deafblind

was better, but not enough, a child with CHARGE who has no hearing and

limited vision is far more accurate.

Kim

[Guest guest]

Oh these are all so wonderful to read!

Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to

[Guest guest]

The only label there is -

CHARGE

Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to