Sunday, June 24, 2012

Helping Hearts

This week, I was scanning through an old magazine at my mom’s house and ran across an article giving advice on how to help a friend who has cancer. Since two of my good friends have been diagnosed with cancer in recent months, the article piqued my interest. Most of the suggestions focused on what not to say, such as questioning the expertise of the patient’s doctor, offering advice on treatment, or telling the person, “I know how you feel” unless you have been a cancer patient yourself and really do know how the other person feels. While all of these ideas were reasonable, the article could have done a better job of telling a friend what to do to help.

Earlier in the week, a friend of mine called to see how things were going with Alex and apologized for not calling sooner. She had e-mailed me several weeks ago asking about his hospitalization, and I had detailed in a reply e-mail the problems he was having with anxiety and aggression and the need to have his medications monitored closely.  During our phone conversation, she explained that she hadn’t called sooner because she didn’t know what to say. However, she told me that she had been keeping us in her prayers. Of course, I understood how she felt because I wouldn’t know what to say to someone in our situation had I not lived it myself. Moreover, I was grateful that she did reach out and call to express her concerns, and I really appreciated that she was praying for us.

The old saying goes, “A friend in need is a friend indeed,” and I have found this adage to be true during the recent challenges and concerns we have had with Alex. Certainly, I knew we could count on our families to support us through this difficult time, but the outpouring of love from friends has been a welcome comfort. What has been interesting, though, has been the way that friends respond to us in different ways, offering encouragement and help. Through their examples, I can share ways for others to help families who are struggling with autism.

Several of my friends are wonderful listeners who allow me to think aloud, share my concerns, and support any of our decisions. Although my mom has been the primary shoulder I have cried upon the past few months, other friends have comforted me during teary times, as well. At other times, two of my male colleagues who are good friends have been especially helpful in empowering me to be strong, assuring me that I will be able to cope as they asked about Alex and patiently listened to my updates on his progress.

Other friends have admitted that they are hesitant to talk to me for fear they will break down and cry. I completely empathize with them because I am the same way. However, they have supported me through hugs, keeping my mind occupied by talking about other topics, and through their e-mails that say what they can’t tell me in person. Similarly, some friends have asked my mom how I’m doing and how things are going, knowing that she can give an honest assessment of the situation.

One of the most helpful gestures that family and friends have done has been to send e-mail notes. Often the notes are simply asking how we’re doing, letting us know that they’re thinking of us, and reminding us that we are in their prayers. Some have been especially good to check on us regularly through e-mail, and I appreciate this act of kindness.  Since Alex has been home, I don’t have a lot of time to talk on the phone, so the e-mails are a nice way to keep in contact with friends. I usually save the e-mails so that I can read them repeatedly as a reminder that we have people who love and support us. Others have sent very sweet cards and notes of encouragement, which I save to remind me how blessed I am to have friends who genuinely care. My friend K.C., who has been recovering from surgery and serious illness while chasing after two preschoolers and getting ready to move, sends me funny cards on a regular basis that always make me laugh, which I have really appreciated. That my friends take time out of their own busy lives to let me know they’re thinking of me has truly been a blessing.

Yet another act of kindness my friends have displayed has been in their offers of help. Some have let me know if there were anything they can do for us, they would be happy to do so. I know them well enough to know that these are not just words tossed off in a sense of obligation, but are genuine in their intent. I have no doubt that if I called these friends with a request, they would immediately be on my doorstep, ready to lend a hand. Others have made specific suggestions of tasks they would be glad to do for me. For example, my friend Debbie, who has faithfully checked in regularly to see how things are going, told me she would run errands for me, do my laundry, and/or sit with Alex. I know without a doubt that her offer is sincere because that’s the kind of thoughtful person she is.

As the autism rates climb rapidly, the likelihood of knowing a family who has a child with autism increases. I hope that by sharing the acts of kindness and generosity my family and friends have shown, others will know how they, too, can help these families dealing with the challenges autism brings. Then they, like those special people God has placed in my life, can bless others with their encouraging words and thoughtful gestures.

“When God’s people are in need, be ready to help them. Always be eager to practice hospitality.” Romans 12:13

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