Asperger Highs and Lows

Sometimes our Asperger child soars so high and achieves so much it's easy to pretend that Autism doesn't affect him that much any more... we tell ourselves that maybe the worst is over... and we are lulled into a false sense of security. So we pull back support a little, we let nagging fears and worries subside and we coast along feeling content. Then suddenly our AS child's world implodes and the fantasy life we have created for him in our imagination disintegrates in an instant!

Life seems to have a way of tapping us on the shoulder when we become too complacent. I'm guilty of this... again! In all fairness though, I think it's human nature to hope for the best, to think positively and ignore nagging doubts, but I do believe this is what gets me into trouble every time our son crashes and burns. It feels like I'm starting over each time... it shouldn't be this hard - we've been doing this for 21 years - surely we know what to expect?

I can't decide which is the better approach - should we (as parents) be on our guard the entire time with our son and support him with military-like precision, even if he doesn't want it? Or should we relax and stand back and watch him soar when he's achieving, and celebrate his success with him?

I always thought the 'highs' and 'lows' of life with an Asperger child would even out and become more like a series of speed bumps, but I'm beginning to see that we may have to climb mountains and tumble into crevasses instead. I guess I just need to adjust my picture of life with Autism because not only is the view from the top of the mountain glorious, there are many hidden treasures awaiting in the crevasses.

Recently our Asperger child successfully applied for an apartment, in a city far from home. He was emotionally and sensorily exhausted from living out of a suitcase and sleeping on a friends couch - no privacy - no space to call his own. We celebrated his delight at finally being able to afford an apartment on his own - he would never have to struggle with interacting with flat mates who didn't understand him again. He would never again be at their mercy when it comes to renewing a lease... "We have another friend who'd like to share, and we'd rather him". We also know this will contribute to his success - he needs a 'safe space' where he can be himself, recharge, chill out and most importantly, get away from people.

To add to his joy, the next day he was offered some freelance design work! This would really boost his bank account as he was starting out. He was so excited, so happy! Finally, everything seemed to be coming together. His Dad and I were happy too - for the first time in many weeks we could finally exhale! This move interstate was going to work!

Our Asperger child rang early on his first morning of work. Anxiety had kept him awake all night... a panic attack had nearly crippled him at 3am. "I can't do it Mum - it's too much all at once!" So distraught - so disappointed in himself - so scared that this will be the pattern for his future!

As parents we've just learned a valuable lesson. Sometimes the 'pace' of life can cause anxiety. We will have to be vigilant and help him learn to 'put the brakes on' and how to say no, or at least hold off a potential job offer until he can cope.

If Your School Were a Hospital, Would the Patients Be Dead?

As a teacher who has worked in several special education settings since 2004, two major issues stand out. The most pressing matters I have encountered include contention over the No Child Left Behind Act (NCLB) in regard to how it affects students with disabilities, as well as the cumbersome referral process.

As part of testing required by the No Child Left Behind Act, an anonymous local school district (not mine) mandated a former colleague to administer a modified version of the High School Proficiency Exam (HSPE) to an eighteen-year-old student, "Lucia" with developmental delays. According to my teacher friend, the district required her to rewrite grade-level test and content area questions to assess Lucia. My colleague did not administer the test with glee, as Lucia performs academically on a first/second grade level and has severe speech delays. How is it possible to test a student on twelfth grade level content when she performs academically on a primary grade level? Is that an accurate measure of data?

Instead of spending hours creating the test, assessing Lucia, and conjuring voodoo data, would not time, efforts, and educational dollars be better spent on teaching the student important and meaningful life skills, and assessing her on information that is important and pertinent for Lucia as an individual?

The referral process for students to be evaluated for special education services is daunting to navigate. Parents and guardians have told me horror stories of advocating for their children. They have recounted woeful tales where their efforts were met with hostility and incompetence on the part of the schools. For example, last year I tutored a middle school student with dyslexia in language arts and executive functioning. Previously the girl, "Lulu," had attended a nonpublic school for students with learning disabilities. This was her first year in public school. Lulu's grandmother, a feisty retired attorney, contacted various parties at the school in vain attempts to facilitate special services for Lulu. Finally, she researched special education law, whipped up the requisite written documents, and the school stopped dragging their feet. On one of the documents for the initial child study meeting, the teacher indicated that Lulu's dyslexia was due to vision problems! Earlier this school year, I heard Lulu was skipping class on a regular basis.

I personally witnessed resistance to referring students for evaluation when I taught third grade in California. Teachers were overtly discouraged from initiating referrals of students, and the principal limited us to referring two students per month. In a child study meeting, the principal poo-pooed a student's difficulty with decoding one-syllable words as an "ELL processing issue." If it were an ELL issue, he would have been able to decode just fine in Spanish, his native language. During the meeting, she encouraged several teachers to watch student's behavior and learning and then take action if the children continued to struggle.