Our Aspergers Teenage Boy

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!

The Boy Scouts are having a merit badge college today. Tommy applied for and got the veterinary merit badge! This merit badge is perfect since he wants to pursue the vet tech program at Lincoln Memorial University in the Fall. The pieces really seem to be falling together well for him. Today he will see a college campus as a student without mom and dad around. He will experience the vast campus and large classroom settings. This will be a great experience!

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!

UPDATE! Due to the icy conditions, Lake Shore has canceled meetings tonight! They have moved the Asperger Support Group meeting to next Tuesday, January 29th. Starting in February, the meeting will return to the 4th Tuesday of each month.

The Knoxville Asperger Support Group has a new location and date!

We meet the fourth Tuesday of every month Next meeting:
Tuesday, January 22nd 29th from 6 – 7:30 p.m.
Lakeshore’s Peach Cottage
Corner of Northshore & Lyons View

Living with or caring for someone with Asperger’s Syndrome can be challenging. The primary objective of the group will be to provide support for each other through discussion and the sharing of experiences at the monthly meetings. Please join us for an exchange of information, ideas and resources.

Join the Yahoo Group

Meeting Announcement

The upcoming meeting dates for the Knoxville Asperger Support Group are:

• Novemeber 19, 2007
• December 17, 2007

The support group has a Yahoo Group which can be found on http://groups.yahoo.com/ by searching for Knoxville_Aspie_Support. It meets the third Monday of every month unless there is a conflict or holiday at the West Branch of the Knoxville Public Library (map) at 100 Golfclub Rd from 6pm to 7:30pm.

The Knoxville Asperger Support Group is a no charge, open discussion on the subject of Asperger Syndrome. Typically attendees are caregivers of children teens, and adults although folks with Asperger’s often attend to provide input, ask questions, or seek out others with Asperger’s. All are welcome!

Potential Special Topic

Dr. Dan Murphy of the School Board has proposed turning KAEC into a middle school to serve the Sequoyah Hills areas. He is making the rounds to several PTOs (will be at Rocky Hill Elementary on Dec 10 at 6:30pm) to garnish support for his proposal. When asked directly as to what would become of the KAEC students, Dr. Murphy gave an ambiguous answer. In my mind that means they either have no plan or will bus the children to Karns. As a parent of a child with Asperger’s, you stand a chance that your child will spend some time at KAEC. This is a topic that needs to be discussed immediately.