Our Aspergers Teenage Boy

In three weeks our son goes off to college! He has 8am and 8:30am classes but has spent most of his summer waking at noon to play World of Warcraft until after midnight. (He did have other activities such as camping and horse riding.) Throughout most of high school, I woke him and with much effort. I won’t be in the dorm to wake him. Of course we fear he will simply sleep through the first few weeks of college and get so far behind that he fails out in the first semester.

We have set a new rule in the house. If he doesn’t get up on his own by the designated time (we are working toward 7am or 6:30am) and be dressed in clean clothing, preferably with a bath, he does not get computer access for the entire day. So far, he is two for two! World of Warcraft is quite the motivator! Lets hope that by August 16th the habit is formed.

Cathy posted about Autism Awareness Day and DanceDiva shared the information with her Dad’s wife who , "wants to know what your secret is?" I replied:

Never quit no matter how tired.
Trust your gut over the professionals. (They are guessing too.)
Research. Research. Research.
Never lunge over the table at an IEP as if you were going to strangle the idiot on the other side (it results in a much larger, lengthier IEP the next go around).
Trial and error. Lots of error.
If its not working, turn it upside-down; there might be a label.
Remember that no two people are the same and there is no checklist or cookie cutter solution that can be applied.
Take breaks for yourself.

And most importantly (I mean MOST), develop a system of support for BOTH you and the child that includes friends, family, and professionals (doctors, teachers, support groups, advocacy groups,…)

Oh, and Valium or Vicodin whenever you can get your hands on it.
[Source]

I should have probably added "lots of luck" and made a note that although we are blogging about Tommy’s successes right now that he still faces many challenges. There are concerns about whether or not he has the independent living skills needed to make it in college (or even outside of the house). He still has ticks that would be worse without our constant nagging…how will those affect him in the real world? He has his quirks…a little of something has to be left with everything (particularly food); a candy bar has one last bite; a box of chocolates has one last piece; etc. Finishing is not a strong suit. Hygiene is always a concern (but isn’t it with most teens?). The list goes on. Tommy is on a good path and that makes me happy. But there was a time, the world thought he would be institutionalized (or group homed) for most of his life. So, yes, luck played a part.

When looking back over the years and thinking about the tags that had to be cut from clothing, the brushing therapy, the meltdowns in the mall food court because of lighting and noise, the inability to shop in Sam’s Wholesale Club because of the lights, the yelps and tears from a finger being pointed his direction, I would laugh out loud if you told me one day my Asperger son would be sitting on a plywood seat of a canoe in a mosquito infested swamp mere feet away from an alligator as large my son! That’s exactly how we spent last week. Five adults and thirteen boys including my son spent five days and four nights on Mixon’s Hammock in the Okefenokee Swamp.

The strenuous paddling upstream into the wind was frustrating but did not break Tommy’s spirit. The mosquitoes thick as morning fog did not quell his desire to sleep in a tent in a swamp and the infected (from scratching) bites are now a source of pride as a battle scar. The four foot long black and brown snake that took residence under Tommy’s tent to avoid further harassment by the curious scouts did not send Tommy packing. The ravenous raccoons, masked with sharp claws, wandering through camp as if they were part of our company, and coming within 10 feet of the humans, did not bother Tommy in the least. The only part of the experience that threw Tommy for a loop was the composting toilet which was almost full to the brim and in desperate need for a new treatment of enzymes. I am sure he wasn’t the only scout that waited five days for the clean restroom of the Corral Wheel restaurant.

Do not let anyone ever tell you what your Aspie cannot do for your child is capable of amazing feats!

At age 6, it was declared "Tommy will never read."
At age 10, doctors, friends, and family encouraged putting Tommy away in a home stating "you can’t save Tommy and the other children."
Tommy spent 2nd to 6th grade at KAEC with no textbooks and "learning behaviors."
In the 8th grade, the school system highly encouraged us to hold Tommy back a year for socialization and maturity (we refused).
In the 12th grade, Tommy takes the ACT and gets a 28. He was expected to take 6 years in high school to accept a special education degree. Instead he completes in 4 years and will walk the stage in May 2008 with a regular education high school diploma.
On April 12, 2008, Tommy received a letter of acceptance from Lincoln Memorial University!

Tommy is thrilled!

Tommy succeeds by his own efforts. He is also supported by a fantastic network of loving family, friends, teachers, doctors and professionals. Never give up; never surrender!

This morning I hear the raspy static of loud white noise. No. It is more than noise. I hear Spanish. But it sounds like a radio station that is not tuned correctly. Raspy static mixed with Spanish. And it is talk radio not music.

I ask my son, "what is that?" He replies, "My alarm. Nothing else sounds good."

Parents of Aspies have learned that it is healthy to shake up their routine. Rearranging their furniture can totally through them off. But life is full of stuff that does not follow our rules. Life has surprises and unexpected turns. We have become complacent in allowing Tommy to fall into a regimented routine of non-activity and primarily days on end of World of Warcraft. Today I forced him off the machines and, along with a friend, dropped him at our local Frisbee disc golf course. He was visibly shaken at the suggestion that he do something involving walking around in the hot sun. No sooner had I arrived home and started to settle into work, the phone rang, "we are out of water and dehydrating. Please come pick up us." When I refused telling them to finish 9 more holes then call me I got a another call, "we found a friend to bring us home" which got a sharp, "no" returned from me. Yes, it is so much easier just to let them have their routines and hide like hermits in their darkened rooms!

Tommy called with nervous laughter in his voice, "We were hit!" For the second time in 6 years, the short bus was in an accident. In those same 6 years, none of our other children, riding regular buses, have had accidents. I could hear the special needs children in the background struggling to hold it together. Let’s be honest, some were absolutely out of control. I could feel Tommy struggling to maintain himself. He wanted to succumb to the madness. He wanted to be sucked down into the land of immaturity but he fought to maintain control despite his morning routine being way out of whack and his surroundings in chaos.

An officer stepped on the bus to check on the children. Tommy laughs and blurts out, "I didn’t do it!" The officer responds, "You’re always guilty!" Tommy calls again. His anxiety is obviously high but he seems to be maintaining himself. "We’re on the news!" WATE put a few seconds of the bus on the news but nothing on the website. It was just a minor scrap on the back corner by an 18 wheeler. For the locals, the truck driver made the mistake of trying to navigate the curve in South Gallaher View Road near Gleason at the same time the bus was in the curve. (Anyone remember the 18 wheeler that got stuck on the tracks trying to get down the drop off before the new crossing was put in?)

All turned out well. I still want Tommy to ride the regular bus next year but since we were unable to arrange a test run this year, he will have to start out on the short bus. I find it pathetic that our special needs buses have children with a variety of issues thrown together in a cramped space for noisy, lengthy rides and the only person to monitor and intervene is an untrained driver which means the driver, who should be 100% focused on the road, is having to divide time between driving and disciplining, comforting, and engaging the children who may have sensitivity issues (say to the noise) and be acting out, or the child might have a violent disposition and be sneaking abuse in on another child, and so forth. I find it inexcusable that every special needs bus does not have a trained aid for the full length of the ride to and from school. I’ll step off my soapbox now.

Update: My initial account of the incident.

Yesterday, after finding excuses for the better part of year, Tommy mustered the nerve to take his test to get his learner’s permit for driving. He passed with 100%! The test administrator said in the 5 years she had worked at the DMV, she could recount only one other teenager who passed without missing a single question. Tommy’s head swelled so big I did not think he’d fit back in the car!

Tommy is thrilled with his accomplishment. As a parent who has lived through having your child child told he’d never read, to being told to lock him away for the sake of the other children, and similar negative outlooks on his fate, this step toward adulthood and independence is wonderful! Coupled with the fact that he will walk the graduation stage with a regular education diploma in May 2008 and that he not longer stands out as different, I have high hopes for Tommy’s future.

We have had such vicious fights with Knox County Schools that our names are known in the administrative offices and I am sure nice things are not said. We have had m-teams and ieps go from brief meetings that barely legally qualified to 3 hour sessions with 14 cranky people trying to deprive our child of his rights. We have come close to getting legal on several occasions.

Knox County Schools has grown and changed for the positive. Despite budget and resource challenges, Knox County Schools has created and provided decent Asperger programs. Our child has grown too. And our meetings have become less frequent and needed fewer people.

Yesterday we had an m-team to discuss Tommy’s problems in history only to find that there really is not a problem. I actually felt guilty for having pulled these people away from their jobs for our silly meeting. Are we missing the fight that much? No, Tommy seems to be holding onto some things being falsely accused of disturbing his history class’ mock trial while everyone else has moved on. With Tommy reporting to us that he was still being blamed, coupled with the lost/theft of his ring, the confusion over transition planning, our lack of involvement with the school this year, and other frustrations led us to believe it was time to have a meeting. We were wrong. Tommy is really doing well! He has grown into quite an impressive young adult.

As I remember my teen years I recall seeking independence, never wanting to show weakness, and touting knowledge where I had none. So, this morning I ask Tommy to boil some water for me and 15 minutes later or so it occurs to me that I still had no boiling water. Upon inspecting the stove I found the tea kettle on a burner on medium heat. Our knobs are labeled 1 to 10 with 1 being low and 10 being high. Tommy chose 5.

Tommy loves to cook and does a very good job. He particularly likes baking cookies. He has been in the kitchen enough to know his way around.

When we label someone, Asperger for instance, we create an outlet to funnel excuses. "He does that because of his Aspergers." This is ok because the child does have Aspergers and the parent needs a coping mechanism to deal with the child’s behavior. Unfortunately for the child, and the parent, the funnel is sometimes too large and sucks normal things into it; our children fall under a huge microscope. Where an undiagnosed child many do something, like set the burner to 5 to boil water, we laugh it off and declare it "cute" but with a labeled child we sigh and feel the need to teach, counsel, and tutor the child over something normal.

Today may have been the first time Tommy has boiled water. Perhaps he was not fully awake and turned the burner to the commonly used medium heat. Maybe he simply did not have the knowledge and like any other teen would rather risk being wrong than show weakness by asking for help.

A couple of years ago we took all the children to Harry Potter’s birthday party, or maybe it was a book release. I took a moment to objectively look at the coward. I saw my family not as my family but just as other people in the bookstore. My children were having fun but each of them exhibited more discipline and better behavior than many of the other children. It was at that point that I realized the techniques, fights, disciplines, and micromanaging of Tommy over the years had trickled down through all the children. I had to ask myself if we had been overbearing parents and I honestly answered no; they are simply well adjusted, happy children with good manners. However, I did come to the realization at that point that Tommy had succeeded where many people thought he would fail. And we as parents could lighten up and not assume every little behavior is related to Aspergers. For instance, there is nothing in our DNA that inherently makes us know that you boil water on high.