Day 363

For the rest of the project I'm going to have a few people in
Kelt's life write guest posts. This entry is by our sister Kenzi.

I thought my dad was joking when he told me I was going to be Kelton's new aid at Whatcom Community College. I realized that he was being serious after attending orientation. As a recent Washington State University graduate, I was not exactly thrilled with the idea of spending my first year in the real world at community college.

It was a difficult process finding classes and programs that would work best for Kelt. After hours of research, tests, phone calls and meetings, my family realized that he would need an aid to be successful. We went back and forth between my mom and I, but finally decided it would seem more normal if I was the aid rather then his Mommy!

The first day of school Kelt introduced me as his personal secretary; last week he announced during math class that my breath smelled like grass; and in weight training he continues to tell everyone that I'm weak and can only do one pull-up. Being his personal secretary and sister can be unpredictable and nerve-racking, making it hard to decipher my role (sister or aid). Through this experience I have realized more then ever that I need to let him be himself. It’s important that people accept him for who he is.

If you were to ask Kelt about college, he would tell you that he's having fun and loves seeing people he knows. I'm happy that I'm helping my family and that Kelt gets to experience college. We've been going to Whatcom for four weeks and each day continues to be exciting. Wish us luck for the rest of the quarter!

Day 357

For the rest of the project I'm going to have a few people in Kelt's life

write guest posts. This entry is by our Mom about Kelt's first day of college.

Today Kelton was tested in math and English at Whatcom Community College through the Adult Basic Education Program. The instructors told him that no one fails; the school just wanted to determine his academic level, but I knew that he had to have a minimum score to be accepted into the program. He ended up barely meeting the requirements and passed at the lowest level.

Before the test I felt negative about Kelton attending the community college because I didn't think it was the best way for us to use our time. My husband was being the positive one, which is a role reversal for us. I felt less anxious after Kelton passed the test, we went through orientation, registered for his two classes, and paid our $25 quarter fee. Once this process was over I realized that my concerns came from the fear that he wouldn't meet the course requirements and be disappointed that he couldn't take any academic courses at the college. Even though these classes aren't for credit, he doesn't know that and will feel like he's in college.

So our new adventure with Kelton begins and hopefully it's a positive one. There are always obstacles we have to overcome.

Day 198

I just watched the documentary Autism is a World about Sue Rubin who is a 26-year-old woman with autism. This film was nominated for an Academy Award in 2004 and produced and directed by Gerardine Wurzburg (Educating Peter, Wretches & Jabberers). This film tells the fascinating story of Sue who finds her voice, potential, and self through facilitated communication. Just like Larry and Tracy in Wretches & Jabberers, she uses a keyboard to communicate, which she started to use when she was 13.

Because she wasn’t able to communicate she was considered mentally retarded with an IQ score of 29 and age-equivalent of 2.5-months. Within weeks of using the keyboard she started to communicate. She was retested and received a 133 IQ score, which placed her in the 99-percentile (scored better than 99% of her peers)!

“I heard sounds, not words. It wasn’t until I got a communication system that I was able to make sense out of the sounds.”

She was immediately put into mainstream classes and graduated from high school with honors. She currently studies Latin American History at Whittier College in Whittier, CA and works as an autism advocate; she’s written numerous articles; presented at over 100 conferences, workshops, and classes; and wrote the narration for Autism is a World. Sue needs 24/7 support, but is living an active, social, and successful life.

I definitely recommend this documentary for anyone interested in autism. It’s only 40 minutes and can be found at most public libraries. To see a video of Sue, Larry, Tracy, and other people talking with facilitated communication check out the Institute on Communication and Inclusion at Syracuse University.

Day 197

Autism's Lost Generation

This article was recently covered in Parade about Dana, a 20-year-old girl with autism who is struggling with adulthood. After 21, which is the cut-off for educational services, there are limited post-secondary programs in the U.S. for people with autism and other types of developmental disabilities. This is the exact problem that we've having with Kelt. Good programs exist, such as Chapel Haven, College Internship Program, and UCLA Pathway, but they're expensive, competitive, and far away.

A few interesting facts/comments from the article:

• In the next 15 years, an estimated 500,000 children with autism will graduate from a school system in the U.S.
• The steep, recurring price of many programs and therapies is why raising a child with autism, according to a Harvard University study, can add up to $3.2 million over his/her lifetime, compared with the $222,360 it typically takes to raise a child to age 18.
• 1/110 children (and 1/70 boys) born in the U.S. is diagnosed with autism, and the numbers have been rising 10% to 17% a year.
• Advocates say that the need for this population must be addressed by the private and public sectors, such as by building appropriate housing, creating tax-free saving accounts for parents to use for their adult children's care, or providing government incentives to companies that hire autistic employees.

http://www.parade.com/health/autism/featured/autisms-lost-generation.html

Day 169

I was going through this book and came
across a characteristic that reminded me of Kelt:

"When I am not drawn in by another person's choice of topic, I often start thinking of things that I am more interested in and don't hear anything they say" (2).

In terms of social interaction this is one of his biggest problems. You can immediately tell when he loses interest because his eyes start to wander, interrupts with a new topic, or sometimes just walks away. Besides communication this tendency also affects his learning and is the main reason why he can't go to a traditional college. Even though he loves history and spends hours researching he'd be bored as a history major because he's only interested in certain topics. He'd also have a hard time completing two years of general education requirements, such as math, science, and English, because he wouldn't have the drive to finish the coursework. Unfortunately bachelor degrees aren't this specific; if they were, just like wrestling, he'd be one of the best.

Day 49

Ever since Kelt was a freshmen in high school, my family and I have been concerned about his 13-year plan. He wanted to go to college, but we didn't know if that would be possible. We wanted to find an option that went beyond the public school transition program for students 18 to 21. Such programs primarily emphasize employment, whereas we wanted a program that incorporated academics, employment, and independent life skills. After researching the possibilities we found 16 post-secondary options for people with developmental disabilities across the country:

• Career & Community Studies: Ewing, NJ
• Chapel Haven West and East: Tucson, AZ; New Haven, CT
• College Internship Program: Berkley; Bloomington, IN; Lee, MA; Melbourne, FL
  
• CPSAS at Marshall University: Huntington, WV
  
• Cutting-Edge: Madison, WI
  
• ELSA: Elmhurst, IL
  
• Gersh Experience: Tonawanda, NY
  
• GMU-LIFE: Fairfax, VA
  
• GROW: Cape Cod, MA
  
• The Kelly Autism Program: Bowling Green, KY
  
• Life Development Institute: Glendale, AZ
  
• Minnesota Life College: Richfield, MN
  
• Occupational Training Program: Roswell, NM
  
• Pathway: Los Angeles, CA
  
• REACH: Iowa City, IA
  
• Venture: Bellevue, WA