BS: Asperger's/Special Ed USA Help Request

Subject: BS: Asperger's/Special Ed USA Help Request
From: wysiwyg
Date: 15 May 08 - 10:03 AM

Hi, I have a special and very specific request for assistance, and I hope Mudcat will come through.


THE BACKGROUND
Carla, a parishioner and former Montessori educator/administrator, has a young son (gr. 1 or 2 I think) with what she has been told is a high-functioning Asperger's. She and her husband have two other older young children at home and a crazy-busy life healthily centered on the three of them. Grandparent support also is present, active, healthy, and educator-experienced.

All three children are in a good local private school here in the rural northern part of PA; services here across the board are good in quality but sparse in delivery because they are stretched thin across a wide and logisitically challenging geographic area. Linking up with other Asperger's parents also is difficult; it's stigmatized here along with any other perceived lack of mental function. Robbie's function is not "troublesome" enough to be effectively on the school's radar, when there are so many lower-functioning children in our area.

I have a particular link to this family and this young child because I once held the infant Robbie all night long in a hospital rocker while Mama got some much-needed sleep herself during an early health challenge; I will never forget watching Robbie's oxygen saturation going up, up, up as I stroked and patted his back.


THE REQUEST
I will very much appreciate EMAIL ADDRESSES via PM of people here who are willing to correspond offthread with Carla. She is eager for support and information to help her deal with the school, but she does not have time for Mudcat (or Asperger's message boards to find the best "fit.")


I know y'all will use this thread if you wish to offer other pearls of wisdom, and I will print it at some point for Carla; but please know that I will not be moderating or responding much here in this thread myself because I'm just not here much these days. (I check in daily and paticipate in a very few threads but my schedule has filled up past insanity for the near future.)


Thanks for any help,

~Susan

Subject: RE: BS: Asperger's/Special Ed USA Help Request
From: Wesley S
Date: 15 May 08 - 10:11 AM

Is there a specific problem with the school that you are free to tell us about? It sounds like they have a pretty good situation there.

Subject: RE: BS: Asperger's/Special Ed USA Help Request
From: wysiwyg
Date: 15 May 08 - 11:04 AM

It sounds like they have a pretty good situation there.

No.

Robbie keeps getting bumped to the bottom of the "waiting list" for more "urgent" needs. Rural = low funding = triage = caring professionals spread thin with too little time plus too much time each day driving to referrals.

"He seems to be coping" equals "He's spending recess every day hiding from the wind inside a tractor tire, and crying when told he must go outside again each day."

"He's so bright! We don't see the problem..." equals "We evaluated him one on one and he did so well, but he's nonfunctional all day in the classroom (or any other group setting) we're too overloaded to sit in all day to observe and evaluate."

Just two examples. Carla needs support from people who've been there and practical information from people who may have information she may not have devoured yet.

~Susan

Subject: RE: BS: Asperger's/Special Ed USA Help Request
From: wysiwyg
Date: 15 May 08 - 11:08 AM

Regarding Email Addresses Received

Thanks, folks, and keep 'em coming. Any received I'll just be forwarding as a list to Carla. You'll need to introduce yourselves to her when she writes, OK? When I email her the list I'll forward a copy to y'all.

Wotta Mudcat. Gets me every time.

~Susan

Subject: RE: BS: Asperger's/Special Ed USA Help Request
From: GUEST,dianavan
Date: 15 May 08 - 01:41 PM

I can't PM because I'm a guest so here goes.

Aspberger's is high-functioning Autism. Most Aspberger's kids need little in the way of academic help. Any emotional difficulties usually arise from social dysfunction.

Counselling from a trained professional is the best answer. A counsellor can give the school recommendations as to how to make school life a little easier. It may be that the wind is a metaphor for the excessive playground noise and activity surrounding an over-stimulated child. Its important to accomodate the child's need for a quiet and orderly space. If possible, this should take place outside but hiding is not an option. A good counsellor or occupational therapist can help this child cope and learn to respond in socially appropriate ways.

I hope this helps. Tell the family that the prognosis is very good and that her child has every opportunity to lead a healthy, normal life if given appropriate therapy. Most schools do not have these services available regardless of waiting lists. Start looking at this as a medical problem and seek help through the family physician.

Subject: RE: BS: Asperger's/Special Ed USA Help Request
From: JudeL
Date: 15 May 08 - 02:57 PM

Sorry to get picky BUT : A child with aspbergers will become an adult with aspbergers,they will never be "normal". The social disfunction is built in as they come at life from a slightly different perspective, usually a very literal one. If they are lucky they will be given the time & support to help learn to accept their differences , value their strengths & learn the coping strategies they need to deal with this illogical society where everyone talks using code phrases that most people understand without even considering what they are saying. They will learn to recognise sarcasm & body language as they would a foreign language. They will accept that people & society have certain expectations of what they consider acceptable reasonable behaviour, and if that differs from how they see the world then they tend to regard it as just one more example of how strange most people are. If they are very lucky they will have a loving family to encourage them to have the confidence to try new things which is just about everything as one of the symptoms is a difficulty in identifying what in a situation they have encountered before so that they can be able to break down new things into familiar bits which they then know how to deal with. To them even more than most of us habit & the familiar is safe which is why there is a tendancy to develop compulsive behaviour. Yes they tend to have unusually acute sense of touch (which is why they are often so attatched to a particular piece of clothing) & of hearing but because of sensory overload will often develop the defencer mechanism of complete concentration to the exclusion of everything else.

Subject: RE: BS: Asperger's/Special Ed USA Help Request
From: wysiwyg
Date: 15 May 08 - 03:48 PM

seek help through the family physician.....

... who referred her to the local evaluators who, here, work with the schools and who are the very same overloaded professionals I mentioned above.....

~S~

Subject: RE: BS: Asperger's/Special Ed USA Help Request
From: AllisonA(Animaterra)
Date: 15 May 08 - 05:57 PM

Count me in. My Aspie son is going to graduate from college in December, age 23. When he was diagnosed in 1994, no one at his school had ever heard of Asperger's Syndrom. But he has succeeded as well as he did because of all the support, social skills training, and tlc he recieved at school. And yes, he will always be "different" and he will always know it, but he feels more secure as a person and treats those around him with respect and confidence, because of the help he god.

Subject: RE: BS: Asperger's/Special Ed USA Help Request
From: wysiwyg
Date: 15 May 08 - 06:10 PM

I'm getting some fabulous PMs. Now I need a coupla boxes of kleenex.

One thing I love about the people stepping forward is you're all so different! Parents, professionals, men, women, different generations, various countries of origin.... a smorgasbord of people for Carla to choose among and a collective body of wisdom that is damn' impressive.

Let's keep all be sure to this thread up near the top over the next week, and then I'll send Carla her Robbie's Personal Help Package.

~Susan

Subject: RE: BS: Asperger's/Special Ed USA Help Request
From: Peace
Date: 15 May 08 - 06:54 PM

An unfortunate thing about special needs kids/adults is that far too many people perceive them (us) as something to be fixed. That just isn't so. We ain't broken, just different.

Subject: RE: BS: Asperger's/Special Ed USA Help Request
From: Riginslinger
Date: 15 May 08 - 10:05 PM

"An unfortunate thing about special needs kids/adults is that far too many people perceive them (us) as something to be fixed. That just isn't so. We ain't broken, just different."


                Truer words ain't never been spoke!

Subject: RE: BS: Asperger's/Special Ed USA Help Request
From: GUEST,Cats
Date: 16 May 08 - 04:52 AM

'Do SEN kids spawn to produce more SEN kids?' This is such an open ended question. It is totally dependant on what was the root cause of the syndrome or disability e.g. genetic or lack of oxygen at birth; what is the syndrome; how much and what kind of support they are given at school and into later life; who their partner is and what is their genetic make up etc. I am Head of Individual Needs at the largest secondary school in Cornwall and work with a whole range of students with different syndromes and disabilities and every student is different and will have a different prognosis. There can't be a generic answer, sorry.

Subject: RE: BS: Asperger's/Special Ed USA Help Request
From: wysiwyg
Date: 16 May 08 - 12:30 PM

Stashing the below here for printing convenience, from one PM I got.

===

..... ask Carla to ask Robbie if earplugs would help on the playground; if so he can pick out some at the store and try them.

As for the school's unresponsiveness.... my inclination would be to address it with the school board as a special-needs issue since he has been diagnosed.

===

~S~

Subject: RE: BS: Asperger's/Special Ed USA Help Request
From: Donuel
Date: 16 May 08 - 01:50 PM

Sue, its is hard to communicate to teachers the need for socializing people with Aspergers or autism. The children with these conditions do in fact suffer from lonliness.

The cause seems to be a difference in the way their corpus collsum passes information from one hemisphere to the other.
THey can be so literal that metaphors upset them.

They are not integrating concepts but sorting them.

Loneliness only make for more stress as they seem to excel in sorting or savant abilities that seem far beyond the norm.

My point is that we may not dectect the lonliness they feel but it is felt even if it is not expressed. Explaning to others the reason these kids act the way they do can be a starting point for others to interact with them in ways thatboth can appreciate more than simply being afraid of or feel contempt for the "strange" kid.

Subject: RE: BS: Asperger's/Special Ed USA Help Request
From: Peace
Date: 16 May 08 - 03:21 PM

Excellent post, Don. Wish you'd been around when I was a kid. Thank you.

Subject: RE: BS: Asperger's/Special Ed USA Help Request
From: wysiwyg
Date: 16 May 08 - 04:01 PM

A word of thanks to site mods and a reassurance to others-- if you see something nasty here, turst that it WILL be deleted before Carla sees it, and just let it slide. Letting it go without comment will help avoid distracting her from the great support and info here.

~Susan

Subject: RE: BS: Asperger's/Special Ed USA Help Request
From: GUEST,dianavan
Date: 17 May 08 - 02:37 AM

Jude L - I used the term "normal" very loosely but meant it to include the ability to make and keep friends and relationships, earn a living and enjoy leisure activities. Yes, it is more difficult but it is not impossible. My niece, who has Aspbergers, has surprised us all.

She graduated from high school, got a job, married and lives quite happily with her husband in their modest home. She is probably the most "normal" person in our family. She leads a very simple life but she is content. She has friends and family that adore her (even if she is a bit 'odd'). Her life is very routine and uncomplicated and thats the way she likes it.

Susan - Yes, the school board is responsible for helping this child to adapt socially but the schools are underfunded. In Canada, you can get on the waitlist at school (urgent cases always have priority when there are not enough services available) or seek Occupational therapy services through the hospital (Dr. referral required). Others go directly for private counselling. When it comes to the school board, the squeaky wheel gets the grease but believe me, the teachers do not need more pressure and without recommendations from a specialist, they are usually quite unprepared to meet such diverse needs. My advice is to find outside help and do not wait. You can then pass the recommendations on to the teacher. A team approach is always best.

Someone brought up a very good point and one that teachers often avoid and that is the socialization of peers. Usually, classmates want to know how to help. We have pupeteers who present a play called "friend to Friend," which has been useful. Its so much easier to socialize a child when everyone is involved. "Its OK to be Different" is an excellent book and when combined with Art, the lesson is very effective. My classes have produced anmazing portraits with captions such as:

Its OK to have a space between your teeth.

Its OK to have a birthmark on your chin.

Its OK to have short arms.

Its OK to have big ears.

Its OK to be left-handed.

When people start looking at their own imperfections, they begin to have more tolerance for others.

btw - a diagnosis is pretty useless unless its accompanied by recommendations for school and classroom. Earplugs are often irritating but its worth a try. Walkmans with favorite tunes also help.

Subject: RE: BS: Asperger's/Special Ed USA Help Request
From: GUEST, Topsie
Date: 17 May 08 - 03:46 AM

My grandson has Asperger's. This seems to be partly caused by his body's inability to process milk and milk products properly. Provided his diet is watched carefully, and he drinks soya milk instead of cow's milk, he does well at school, and hardly 'twitches' at all. (Some children/people also have problems with wheat and/or fruit such as strawberries.) Try cutting out milk, and see what happens.
His hearing is very sensitive - it can be a problem but it can also be a bonus as well, as he hears things in music that I am unaware of.

Subject: RE: BS: Asperger's/Special Ed USA Help Request
From: GUEST
Date: 17 May 08 - 03:04 PM

WILCO - Wysy - Will Do

This is slipping down the thread line - like a prom-dress after midnight.

Another case of "looking for all the right answers - in all the wrong places."

SWIZLE - This is THE PLACE you and your friend should begin.

Like Mudcat is to Folk Music - THE AUTISTIC SOCIETY FORUM is to mental processing; it has a hundred different parents discussing and supporting each other. Your friend just needs to introduce herself.
http://www.autisticsociety.org/Forums.html

ANOTHER Forum:
A high quality, high volume support list where parents share stories, treatments, therapies, ideas, advice and support about their children with moderate to high functioning autism or Aspergers syndrome.
http://health.groups.yahoo.com/group/Autism-Aspergers

Descriptions:
People who understand
http://www.emergingworlds.com/ch_article.cfm?link=Aspergers_Syndrome.htm

What you are asking for is a "Pen Pal" - you will find dozens if you go to the right "postoffice." Try those above.

Sincerely,

Subject: RE: BS: Asperger's/Special Ed USA Help Request
From: wysiwyg
Date: 17 May 08 - 03:33 PM

Thanks, all. I have saved and printed all of the above. More will be welcome.

~S~

Subject: RE: BS: Asperger's/Special Ed USA Help Request
From: wysiwyg
Date: 18 May 08 - 01:27 PM

Carla was so touched when we gave her the first printout, today, of all of the above plus the email addresses I'd received so far.

You guys are the best.

~Susan

Subject: RE: BS: Asperger's/Special Ed USA Help Request
From: open mike
Date: 18 May 08 - 02:56 PM

this OASIS online support group is sponsored by University of Delaware
http://www.aspergersyndrome.org/
This one is from Maryland
http://www.aspergers.org/
here is a directory of support groups and organizations
http://www.kandi.org/aspergers/Support_Groups_and_Organizations/index2.html
here is another resource
http://www.fortunecity.com/millennium/sweetvalley/166/aspergers.html
I wish your friend luck...and I hope she will find a support
network of understanding and help.

Subject: RE: BS: Asperger's/Special Ed USA Help Request
From: GUEST,EK\LOYG.....
Date: 18 May 08 - 11:29 PM

WYS= you are a laugh a minute.

re: we gave her

you got a mouse in yer pocket - or delusions of royalty - or share one of my daemons?

re: first printout, today

you doing more than one a day? I thought you sort of revered trees rather then sending to the paper-pulp-mills.

re:...(printed)all the email addresses

Ummm....arn't e-mail adresses MUCH easier to use when sent through e-mail? (mistakes happen in scanning and re-typing.)

WYS - you truly are "special." (At least from my point of view)

Sincerely,
Gargoyle

Subject: RE: BS: Asperger's/Special Ed USA Help Request
From: Bonzo3legs
Date: 19 May 08 - 04:29 PM

Try this lady
http://www.cam.ac.uk/cambuniv/disability/university/trainingdb/record0170.html

Subject: RE: BS: Asperger's/Special Ed USA Help Request
From: wysiwyg
Date: 19 May 08 - 05:38 PM

Garg, to allay your concerns, here's a re-wording for clarification.

We (my husband and I) gave her....
(I had given the pages to him the night before and he was the one who had them in hand to give her during a busy coffee hour as she was leaving.)

.... the first printout, today
(I gave her the first printout of the thread posts, today (yesterday).

printed all the email addresses (because I didn't have her email address till yesterday and wanted her to have a start on info collected, pending her giving it to me).

And yes, I do have Carla's email address now so that the next batch of "helps" will probably go via email.

And.... people here in RuralLand still appreciate printed matter they can actually hold in their hand as a tangible sign of care and concern-- and/or give to spouses who are heading off to work, so the spouse has a little encouraging lunchtime reading. That's why Carla was so touched when we gave her the first printout, yesterday, of all of the above plus the email addresses I'd received so far.

You guys are the best.

~Susan

~Susan