Re: Introducing myself (back to )

[Guest guest]

,

You wrote:

> Reading Jules post, and your own, I would investigate Aspergers and the

> autism spectrum too. Jule and I obviously havent seen thomas, but based on

> your description, he does sound like he fits...?? Has this been looked

into

I will investigate Aspergers. It was my partner who saw a program on

television and immediately wondered if might fall into that spectrum.

Most of our diagnostic suggestions were not really considered during '

assessment. In the structured hospital environment thrived and I

think he enjoyed the testing and the interaction with the nurse. In fact he

complained during his outpatient stint that he did not have enough time with

his nurse. There were opportunities during his hospital time to see

" meltdown " , but it in no way reproduced the experience at school on a

regular basis or at home when he is very ill. His team specialists all

admit ' case is very complex and that it is not clear what triggers

the anxiety attacks and when a reaction is emotional or behavioural in

origin. They seem to want to focus on temperamental factors, IQ scores,

occupational therapy assessments and so on to explain his problems. The

fact that he desires social interaction with peers, although he fails to

manage it well was, I think, part of the reason for discounting autism

spectrum disorders. What I have read on this so far warrants investigation,

as does a complex of anxiety disorders. Something seems to be missing in

what we have been offered so far.

As parents we know there is something more going on here. We have seen this

child become very ill. After the time change at the end of October, the

month of November was hellish for and his teachers. At this point

schoolyard infractions began to be a problem. Not only had become

the object of persistent ridicule from many children, he can be wound so

tight that if he perceives that someone has bumped into him or his friend he

reacts quickly and physically without thinking. And then misses a week of

recess. These types of occurrences are especially disturbing to us because

has never been an aggressive child. And because the spotlight is on

him, is immediately tagged as the problem. Since no concrete

measures have been suggested apart from getting him into a special class

across town which has no spaces, I have become frustrated. He is getting

through the day at school, but he is not learning and much is simply

maintenance or damage control.

> Is involved in any art classes??

We are fortunate to live half a block from a City run Arts Centre where the

staff has always been very accepting and tolerant of . I put him in a

day program for Teacher's Convention last February when he was really ill.

His sister was with him so I though he would be okay, but during gym time he

would collapse in these hyperventilating panic attacks and the staff were

afraid he had asthma or something I had not noted on his form. This fall

there was a marked improvement in him, but his class was very small after

school class. He even had the responsibility of looking after himself and

his sister for about half an hour between school and the class one afternoon

a week, a huge confidence builder. But by the end of the nine week session

he was losing the ground we had gained and I was afraid to have him come

home on his own. He was anxious and irritable and unable to cope. One can

never rest on one's laurels with this child, we learned that a long time

ago!

I have some specific questions for you or anyone else who cares to take stab

at this: Since has a care team, I think we should approach the

hospital first and then set up a school/hospital conference. We have had

contact primarily with the psychologist and the family counsellor (who gives

us both the creeps!) and little directly with the psychiatrist. Since we

have two specific areas that bear investigating as adjuncts or alternatives

to the current diagnosis (three if we resurrect bipolar), how does one

present this without alienating the professionals? Should we ask for a

written report from his teacher perhaps describing the classroom situation

and present our diagnostic concerns first? The feedback between the school

and the hospital is not ideal as, being that is all a public system here,

the red tape channels back and forth are significant and slow down the

exchange of information. It is a source of great frustration to us and

those who care about . Finally ' conduct with adults and his

facility with language in one on one or small group settings tends to seduce

even the professionals. They often take his assessment over ours or the

teachers, as if we are too hard on him. It is endlessly frustrating. Even

if he is asked if things are improving and he shuffles and looks at the

floor and says " Yes.. " , our perky family counsellor says " It looks like

things are improving now for " and I feel like strangling her! Sorry

for my cynicism, but how does one engage in meaningful dialogue with the

professionals?

I am most grateful for all of the feedback I have received in my short time

on this list, but above all it is good to be in the company of so many who

face the challenge of high needs kids every day. Thank you.

ph

[Guest guest]

ph:

You wrote: " The

fact that he desires social interaction with peers, although he fails to

manage it well was, I think, part of the reason for discounting autism

spectrum disorders. "

Many children with ASDs are gifted in language -- however, they don't always use

language in the appropriate context. I have a friend whose son has AS. Alec

speaks very well and uses complicated vocabulary, but often he is simply

spouting sentences he has read or heard elsewhere, even though he manages to use

them appropriately most of the time. I would suggest trying to get a copy of

Tony Attwood's book on aspergers. Kids with AS often have comorbidities,

particularly anxiety disorders such as OCD.

As for dealing with " professionals " , I have found that at times I can simply

say, " I wonder if. . . " and other times I need to couch my suggestions or

desires in a way that makes the professional(s) think they came up with the idea

themselves. This is a trick I learned when I was still in a nursing position in

dealing with the docs. Most nurses know a heckuva lot more, but we can't let

the docs know that. <VBG> I've gone in with things I've gotten off the

internet, or taken in books, and sometimes they get all bent out of shape, and

sometimes they listen. What's really important, though, is that you keep

emotion out of it. You have to be their ally in discovering the best treatment.

As many times as I wanted to yell and scream about something, I always waited

until I had cooled down and could be rational. I call this using my nurse voice

instead of my mom voice. After my son was browbeaten by the so-called guidance

counselor at school two years ago, I called the principal and said, " Houston, I

think we have a problem " . (Some of you old timers might remember that story . .

.. ).

Barb Kirby's website is also an excellent place to learn about AS. And there is

a listserv for parents of AS kids. I can probably get you the info if you want.

Jule