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Many people are familiar with the common traits of Asperger’s Syndrome, but look closer and you’ll often  see difficulties beyond the social challenges and repetitive or obsessive behaviour:

Sleep problems. Tummy troubles. Severe disorganizations.   Communication challenges. Grooming issues. Concrete thinking. Emotional immaturity.  Lack of coordination.

I could go on.

I think I will.  I think I will because there’s one problem that is overlooked, ignored, neglected and too-often handled in such inappropriate ways that it can have a profoundly negative effect on the child. I am talking about the common problem of poor handwriting.

If I were Queen of the Asperger’s Universe, I would make certain that every child received keyboarding lessons and their own laptop at the first sign of this learning disability.  Called dysgraphia, it is one of the more common school-related issues for many with Asperger’s Syndrome and other Autism Spectrum Disorders. In the many years I have been working with individuals with A.S., I have found the majority struggle to produce written work by hand. The process of holding a writing tool, creating letters, and organizing their thoughts is so onerous, tiring, and sometimes painful that many children just shut down.

When it is time to do written work—what a surprise!–they have a stomach ache. Or a meltdown. Or they start with that relentless negative-self-talk.

But  here’s something that may surprise you: it’s not the dysgraphia that’s the problem here. That’s because with technology support, the problem is circumvented.

The real issue here is that schools take a very long time to respond to the needs of children who present with a problem in this area of functioning. It is unfortunate that some boards of education do not act even when an outside professional has deemed a laptop ‘essential’ for the child’s learning!

Rather, the practice is to spend more taxpayer money as  special education teachers  evaluate his writing vs. keyboarding abilities, analyze the data, make a recommendation, and then…the suffering child waits.

Eight months.  A year.  Two years… I know a lovely young boy who, in spite of a clear directive in a psychological report from a major teaching hospital that a laptop was ‘essential’ for his learning– and in spite of the fact that school board testing verified that finding a year later–he  was well into his third year of waiting before he got his technology just last week.

How very sad.

It may be too little, too late. He stopped producing written work a long time ago. His self-esetem eroded by constant reprimands and do-overs,  he’s already feeling “dumb”.  Good job, school board. Good job.

It’s pretty common that children who can’t or won’t print or write lag  behind in their school work, and that  their grades don’t reflect their cognitive abilities. Teachers think they’re lazy; parents may wonder the same thing. The child’s anticipation of written work and the ensuing effort it requires can lead to chronic anxiety, low self-esteem,  and even refusal to attend school.

Some educators think all kids have to learn to print and write well, and have no time for the perceived ‘easy road’ that a laptop, a scribe, or oral testing represents.   ‘How unfair to the other children!’, those teachers contend. (Ahhh, such a good argument for making special education courses a mandatory and significant part of the qualifications teachers must have before being allowed in a classroom—‘cuz right now, they aren’t required to know much at all in this area.)

When I go to schools,  I hear teachers telling me that ‘Bobby’ needs to try harder with his handwriting…that he’s a nice kid and a smart kind but he’s lazy.

I see kids with A.S. walk through the front door of their home after school with that characteristic slouch and lumbering gait, shoulders sloped, head down–defeated. In their backpacks, I have found worksheets circled in red: “What does this say? I can’t read it. RE-DO by tomorrow!”

Egad, teachers. Really?

Let’s refocus on the needs of the child as required by  PPM #8, which defines programming and services for students with learning disabilities, and PPM# 11, which MANDATES early identification of a student’s learning needs. To that end, information to help teachers identify dysgraphia in their students ought to be widely shared. Let’s help them to help our children.

Here’s a quick lesson for the time-strapped educator who cares enough to seek understanding:

Dysgraphia is a learning disability that frequently accompanies a diagnosis of Asperger’s. If you suspect someone you love or someone you teach has dysgraphia, please do your part to help them out. Here are some things you may notice:

* Handwriting that is illegible or just very difficult to decipher

 * Handwriting that is well-formed but takes a great deal of effort to produce.

 * The child/teen/adult may hold his pen or pencil in an unusual grip and have odd body posturing as he works.

* They might seem to get fatigued very quickly when writing.

* They can have difficulty organizing themselves on paper.

* The quality of the written work lags far behind the comprehension demonstrated when she tells you a story or explains the work.

* The child/teen/adult may approach written tasks with increasing resistance.

Life is interesting as an Asperger’s advocate.  I get to share my knowledge and experience and in the process, help  desperate children whose personal hell is often spelled s-c-h-o-o-l.

Some of these situations have been tough to remedy: I’ve  met with experienced teachers  who know little about Asperger’s Syndrome  except, perhaps,  for a single workshop taken long ago.  Still, they’re certain that AS students have an unfair advantage over typical students because of  all the supports in their Individual Education Plans.

No problemo.
Most often, after an hour of discussion about AS, the teacher is eager to learn more and is  willing to try new strategies to help the student succeed.  We exchange emails and phone numbers.  Everybody goes home happy.

On the other hand, I’ve had staring contests with authoritarian and inflexible principals whose refusal to grant an Asperger’s student  necessary  accommodations can sentence that child  to a school year of anxiety,  failure, and hopelessness.   Mr. Principal believes the AS student is ‘high functioning’  and needs no more consideration than any other student.

Really? Did he say that out loud?  Oh wait–perhaps he became an Asperger’s expert when he earned his graduate psychology degree.  Oh?  He doesn’t have one?  My mistake.

But I digress…

This type of scenario is a bit more work, because it is tough to get through to someone who already knows everything.

Still, no worries.  Over his head we go to a superintendent, a director of education, the media or more often,  all three at the same time—all in a determined quest to get a child with Asperger’s what he needs to succeed.  The principal couldn’t be more charming or accommodating (excuse the pun) when parents and I next meet with him to detail their concerns and must-have supports for their child.

…so handling schools is always a challenge, but almost always is resolved in the child’s favour.  Principals and teachers will defer to reason, direct orders from a superior, or pressure brought to bear by the media.

Which is not to say I haven’t, on occasion, met my match.  Oh I have—the immoveable, close-minded, determined type of match that we are all so familiar with.

Our AS kids.

Trying to convince them to accept and embrace their supports is like…well, it’s like trying to get a kid with Asperger’s to do anything he doesn’t want to do.

And it is frustrating.  Frustrating for parents and for the teachers who want to help them. Many  are so smart! However, though they may have above average to superior I.Q.s, they may find themselves struggling to achieve even passing grades in high school, and why?  It’s not because their IEP is lacking.  It’s not because teachers or admin are unwilling to support them.

Nope.

It’s because these kids want no part of an Asperger’s diagnosis.

It shouldn’t come as a surprise. Like all teens, they want to fit in.  They  don’t want to be seen as different from typical students, and don’t want to be seen as requiring special education supports. As a result, they won’t use their laptops, won’t accept help with organization, won’t ask for clarification of questions on tests or exams, and won’t write those tests and exams away from the other students and with extra time as required.

…and all of this can spell academic disaster for some of our kids.

So how can we help them?

By advocating for Asperger’s in an entirely  different kind of way.

(to be continued)

Finally!  After many frustrating years of piecing together the puzzle, after dozens of specialist appointments and assessments, of holding your breath and waiting, you finally have a diagnosis—a label—for what is wrong with your child:  Asperger’s Syndrome, an Autistic Spectrum Disorder.  You’re actually relieved to know what you’re dealing with, because, well, because  now that you know, it’s time for that Grand Poobah of Asperger’s from the Special Ed department of your school or from Child’s Service to swoop in and fix your child.  What a relief.

For a moment.

Until  the silence and lack of response from your community is deafening and you realize, with a sinking heart, that it is only time for one thing:

A reality check.

The fact is, there is no doctor, no teacher, no specialist out there who can, on their own, ‘fix’ the all the problems your child is dealing with.  Let me explain:

  • Most family doctors know little about Asperger’s Syndrome and while they can be notorious for denying the presence of symptoms in the face of concerned mothers, can be helpful in referring us to other specialists and resources. They often are unfamiliar with the sleep and digestive issues that can accompany the diagnosis, or the special considerations ASD kids may need when taking medications.
  • A psychiatrist can be helpful when mental illness is an issue (anxiety and depression can be pervasive with these kids), and can be excellent supports and advocates for our children who come to trust and confide in them.  It is not within a psychiatrist’s realm of  responsibility, however,  to provide social skills training, sensory therapy, or any of the many other problems that affect our child’s day to day happiness.
  • Teachers—argh.  Don’t get me started.  Too late!  So with apologies to those wonderful, caring teachers out there, I’m just going to say it: most classroom teachers get little training in how to support our ASD kids, and are fearful of having them in their classroom.  Many regular classroom teachers feel the accommodations and modifications our children need to succeed and get through the day amount to special attention or are somehow unfair to the rest of the class.  They show little patience and less compassion.  They don’t follow our child’s Individual Education Plan because they don’t understand what the document is asking of them.  And may I add, after speaking with thousands of ASD parents, that too many  teachers belittle, harangue, dumb-down, and generally are just not nice to our kidsEducational Bullying, a term I just heard at an Asperger’s  workshop last week, encompasses those kinds of behaviours.
  • Occupational Therapists (OTs) are one of the most valuable supports out there.  These are the experts who can help our child with the large and small motor skill issues, sensory issues, grooming issues and disorganization that can make their days so very difficult.  Unfortunately,  waiting lists for their services are long, and at a cost of  about $100/ hour,  they are meted out quite stingily by school boards and  regional governments.  Our ASD kids  need OT help every day, incorporated into almost everything they do.
  • Ditto for speech therapy.  It is costly, and to be effective, needs to be started as soon as possible and continued until the problems are corrected.  Again, funding realities mean that kids get sporadic chunks of speech therapy instead of the consistent, long-term support that would most benefit them.
  • Social Skill teachers…what are they?  Where do we find them?  This is one of the questions I am asked most often, because it is our children’s lack of social skills that cause them so much grief.  Unfortunately, you will not be assigned a social skills expert once you have a diagnosis.  True, your child may be offered a place in a social skills group, where he’ll learn some appropriate social skills  along with other socially-challenged children (and pick up a few gems you’ll wish he hadn’t!).  You may even be lucky enough to have an Educational Assistant who occasionally writes social stories with your child to teach him expectations.  Here’s the problem:  our kids need social skills training every day, in natural learning environments as well as formal settings.  ASD kids need to be taught all the things typical children learn naturally in the course of growing up.  This is not a one-hour-a-week undertaking.  That’s like trying to hydrate your  lawn by pouring spoonfuls of water on it.  Not completely useless, but not really effective….

So what is a parent to do?  You thought that the diagnosis would make your life—and your child’s life—easier?  Has it??

I didn’t think so.

But here’s the thing:  things CAN get better.  As soon as you decide to learn all you can about each area of need for your child, the tide will turn.  So what if you can’t afford intensive Occupational Therapy for the next 15 years?

You can learn how they work their magic and you can apply those principles and practices yourself.  It is not difficult—surprisingly easy, to be truthful—and the same goes for speech therapy.  Sit in on the sessions your child has with those professionals , and learn how it is done.  In every area where your child has problems—social skills, severe disorganization, clumsiness, learning issues—become a lay expert and it’ll rock his world.  Learn all you can about your child’s special education rights as well, and watch his teachers look to you for guidance and suggestions. See yourself become more confident in dealing with school officials. Watch his self-esteem improve as he copes better with his anxiety.

See you exhale.

Tools ‹ Asperger’s Answers — WordPress.

After years of struggles and challenges thanks to his Asperger’s Syndrome, my 20-year-son is succeeding in university. It has been a long road to get this far.  The purpose of this blog is for us to share information we have learned along the way that has made Daniel’s journey easier and more successful.  The sooner you learn about the many issues that impact upon our Autistic Spectrum Disorder kids, the sooner you’ll be able to help them to find ways to manage these problems.  From stomach aches to sleep problems; social skills to meltdowns; clumsiness to depression–no topic is off limits.  I promise  you’ll be entertained and informed.  It is my sincere hope that we can help make your lives easier and that you, in turn, will share what you have learned with other parents struggling with the lack of support and knowledge around Asperger’s Syndrome.   Please join us.