Our Aspergers Teenage Boy

Tommy rode in his last STAR horse show today. He received 2nd place in two categories and 5th place in another. He is very unhappy that he did not receive a first place ribbon. He rode the Intermediate level against some well seasoned riders. He was on an unfamiliar horse, Virgil, which was acting up so badly that a volunteer had to run beside the horse but was not leading the horse. Tommy could handle the acting up and could have done without the volunteer but I understand their safety concerns. The problem with the volunteer is that Tommy, albeit possibly subconsciously, sees the volunteer as a crutch and does not ride his best. He and I also had a rough morning and I am sure that a combination of the sidewalker (volunteer), his mood from our arguing, and the quality of the other riders all contributed to his performance. None-the-less, he placed well! He should be proud. I know I am!

[n.b. My dates may be off a little.] After being on a waiting list for 3 years, Tommy entered the STAR program in 2002 and rode every session for six years including six competitive horse shows. I believe strongly that STAR helped Tommy progress in self-control, kindness, social skills, agility, dexterity, critical thinking, and led him to a desire to pursue a career in the veterinary sciences. During his time at STAR he faced losing the ability to participate when he went through a period of rudeness to the volunteers and, although not abusive, unkindness to the animals. Around the same time, one medicine sent his weight skyrocketing above the programs weight limit. STAR did not give up on Tommy. His weight decreased, his attitude and manners changed, and his progress as a rider was notably better. Tommy today is a skilled rider who is leaving the program at Shangri-la Therapeutic Academy of Riding (STAR) to pursue a degree in Veterinary Technology at Lincoln Memorial University. Thank you Lynn Petr! Thanks to your staff of wonderful teachers! Thanks to your volunteers! Thank you to the contributors who made STAR possible! And thank you for this exceptional program!

Note: Technically Tommy has one last ride on Tuesday as a make-up class. I will return to STAR to volunteer when I can.

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.

Michael Savage thinks autism is the parents fault.

Michael Savage … characterized nearly every autistic child as "a brat who hasn’t been told to cut the act out." [Source, The New York Times, Savage Stands by Autism Remarks]

Today in the New York Times:

Dr. Miller learned that Tim, who has Asperger’s syndrome, was being unusually confrontational in class, and that more than once teachers had held him down on the floor to “calm him down,” according to logs teachers kept to track his behavior; on at least one occasion, adults held Tim prone for 20 minutes until he stopped struggling. [Source, The New York Times,Calm Down or Else]

Wow! Do I ever remember those times. Of course, I don’t remember ever considering a lawsuit. The restraints are just something that had to happen at those times. Everyone was simply trying to figure out how to help the child. Granted, forcefully restraining a sensory sensitive person isn’t really going to help. We found distraction helped the best. In the case of child melting down, say tearing up a classroom, often removing the audience helped more than a basket hold. Restraint server a purpose of trying to keep the teachers and the children safe, but they aren’t therapeutic.

Tommy is graduating with Bearden High School’s Class of 2008 tonight! He has been accepted to Lincoln Memorial University and has even received a scholarship!

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.

Read what Tommy’s mother, Cathy, had to say.

This week has seen an influx of visitors to Aspergerteen looking for information on Bill Gates and Asperger’s. I’d say CNN’s article Asperger’s: My life as an Earthbound alien is why.

Don’t pity me or try to cure or change me. If you could live in my head for just one day, you might weep at how much beauty I perceive in the world with my exquisite senses. I would not trade one small bit of that beauty, as overwhelming and powerful as it can be, for "normalcy."

Source, Asperger’s: My life as an Earthbound alien

That’s beautiful! It should be on billboards and bumper stickers and business cards and everywhere! I think if I ever attend an IEP again that will be read at the start of the meeting.

The CNN manager, who doesn’t appear to have an credits on the story, exquisitely sums up the Aspies traits.

• tend to have specialized interests
• don’t quite understand small talk
• A misconception is that Aspies do not have a sense of humor. [Tommy has a great sense of humor!]
• lack the ability to see emotion in most facial expressions
• intensified senses
• live with anxiety

She leaves out that Asperger’s Disorder typically follows the male lineage which makes her even more unique. I find these articles interesting and wish we had written more when Tommy was younger. Tommy now blogs but I think he often finds it a chore. I hope he will read this article and be inspired to write lengthier, more intimate stories of his own life.

I do caution people about red car syndrome. The Autism spectrum is broad and it is easy to find autistic traits for everyone we know and even ourselves. Be sure to visit a professional to confirm any suspicions of Asperger’s Syndrome. Asperger’s was first diagnosed in 1944 by Austrian pediatrician Hans Asperger. The diagnosis was not translated into English until 1989 and was not accepted as a diagnosis in America until the mid-nineties. Only in the past decade have inroads toward acceptance, treatments, therapies, integration in schools, and support systems developed in the United States. Today’s Aspie is very fortunate compared to the Aspie a decade ago. Tomorrow’s Aspie will be ever more fortunate.

Tommy is doing a project in his Ecology class and needs to collect different opinions on a variety of topics. The first is regarding the water dispute between Tennessee and Georgia. Could you head over to Tommy’s blog and give him your thoughts in the comments of his post Water Dispute? Thank you!

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!