Sunday, June 17, 2012

Coming Home

Much has happened since my last blog entry a few weeks ago. Namely, about a week and a half ago, Alex was released from the hospital and came back home. After trying different medications at various doses, the nurse practitioner overseeing Alex’s case arrived at a regimen she believes will keep his anxiety under control such that he would be unlikely to have aggressive meltdowns, which initially put him in the hospital in the first place. The hospital assured us that he was stable enough to be released and sent home. While we had concerns, we had no other options. The state funding for residential care is still being processed, and the only placement the hospital could find for him was an academy for young adults with autism in Illinois that our insurance would not cover and cost $250,000 per year. Moreover, our efforts to get state funding for Alex’s disability would have been a waste of time because if he went to the school in Illinois, he would no longer be an Indiana resident and would not qualify for aid. Consequently, we brought him home, prayed hard, and hoped for the best.

So far, he has been fairly calm, although he has celebrated his freedom in being home by asking to go places several times a day, which means that Ed chauffeurs him around quite a bit of the time. In addition, he has been requesting his favorite foods, which means that we have been playing short order cook for him. Certainly, we are happy to have him home, but we hope he settles back into a routine where he isn’t so focused on food and gallivanting around town. Fortunately, he sleeps well at night and has generally been cooperative with us. We pray this continues.

Last week, Ed and I visited day programs for adults with disabilities operated by Opportunity Enterprises, an outstanding local organization that works with people who have various disabilities. While we were impressed with the main facility that offers workshops where clients shred documents from businesses and assemble jewelry boxes or medical equipment, we felt that Alex was not yet ready for this type of working environment. However, their second facility offered a school-type setting we felt was ideal for him because he loves to learn.  This week, Ed and I took Alex to see the “new school” so that he could get a sense of what it is like. The friendliness and caring of the staff members as well as the joy of the students confirmed our desire to place Alex there for day programming. Now we are in the process of doing paperwork to see if he can be admitted because we believe he will thrive in that setting where he can learn and be with peers. We are hopeful we can get him enrolled this summer so that he can get settled before Ed and I go back to school in August.

Meanwhile, we are still working to get state disability funding, which is basically a process of generating tons of paperwork and answering multiple questions and waiting to see what support we will get for Alex. This week, an agency affiliated with the state conducted phone interviews with Ed and me to assess Alex’s needs. We have answered several of these types of questions before, so we’re becoming quite good at the interview process from sheer practice. These questions focus upon health, motor skills, communication, daily living/self-help skills, and behavior. Of course, we’re thankful that Alex has perfect vision and hearing and that he can move freely without any physical impairment. In addition, the various toileting questions made me feel blessed that he can use the toilet independently, always staying clean and dry. His main areas of weakness lie in his communication and in his need for help with daily living and self-help skills along with his behavior, which can be unpredictable at times. 

Some of the questions struck me as amusing, such as “Can he sew a button on a shirt?” Heck no—his father with a Ph.D. can’t even do that, which is why they have me do it for them. Another question was whether he closes the bathroom door when he uses the toilet. This is something he usually forgets do to, but I am proud that he always flushes and puts the seat and lid down when he’s finished, which puts him ahead of most males in the toilet courtesy department. Besides asking about his habits, we were questioned about his hobbies and interests. As we answered these questions yet another time, I felt as though I were completing an online dating survey for Alex. So what would Alex’s profile look like?

I’m a tall, thin 20-year-old single white guy who likes sports, music, computers, watching television, and reading. I’m currently unemployed and living with my parents. Looking for someone willing to drive me around because I don’t have a driver’s license or car, but I enjoy going places. Willingness to prepare food (gluten-free and dairy-free because of my food sensitivities) for me is a must; I love all foods except popcorn and mashed potatoes.  Turn-ons include math, shrimp, jazz and country music, the Game Show Network, Wal-Mart, and surfing the Internet. Turn-offs include overly salty food, rap music, hockey, and elves. If you’re willing to tie my shoes for me, we can spend fun times at concerts, going shopping, or out to dinner. However, my medications make me sleepy, so I need to be home and in bed by 8:00 P.M.

On a more serious note, we keep praying that the state agencies that provide funding for services for the disabled will move along Alex’s application smoothly so that we have options as to what placements we can choose for him. Again, we wait with faith and expectancy to see what God has planned for Alex. In the meantime, we pray that his anxiety remains under control so that we can enjoy having him home and not worry about him. 

Also, I’d like to wish a happy Father’s Day to my dad, who has been wonderfully supportive and understanding of Alex, and to Ed, whose patience and unconditional love have deservedly made him Alex’s hero. I’m thankful to have both of them in my life and for Alex to have such good role models. Their faithful presences in his life are truly a blessing, and I thank God for them.

“The godly walk with integrity; blessed are their children who follow them.” Proverbs 20:7


June said...

Pam, I do hope Alex gets the placement that is best for him (and for you and Ed too - $250,000 - sheesh!).

K. C. said...

Thinking good thoughts for an anxiety-free Alex and for the funding to appear quickly. Sending love your way!

Eddie said...

Cheers, you do a very generous job!

marjorie said...

The ad made me laugh out loud. Thanks so much for these super-informative posts about navigating the system. I'm a writer doing a piece for Woman's Day about raising an adult child with autism and I'd love to chat with you; I can't find your contact info on the blog -- would you email me (snarly at snarly dot com) if you might be interested in being interviewed and offering advice to other parents? Thanks very much, Pam.

Pam Byrne said...

Dear June, K.C., Eddie, and Marjorie,
Thanks for your nice comments and good wishes. Marjorie, I've enjoyed chatting with you via e-mail and phone this week and hope that your article turns out great!
Take care,