Repeat the Sounding Joy

 

Yesterday, I read an anecdote written by an outstanding autism mom blogger whom I admire and respect that made me reflect on not only how far Alex has come over the years, but also how much I have learned from time and experience of being an autism mom. In her story, which she asked other parents to share online, she told of recently taking her young son with autism to get a haircut at a salon. When he began to squirm, the stylist told her that she could not cut his hair safely because she was afraid she might cut him. His mother explained that he has autism, and the stylist refused to cut his hair. Undeterred, the mom took her son to another salon, where a stylist successfully cut his hair and kept her son calm in the process. However, she was still angry that the first salon turned them away, citing discrimination because her son has autism and noting that parents of children with autism should not have to tolerate this kind of treatment.

The comments on Facebook that followed her story and response to what happened basically fell into three categories. Most people who commented were fellow autism parents who shared her anger and demanded action against intolerance toward children with autism. A few defended the actions of the first stylist, noting that she honestly explained her fears of hurting the boy. The third group shared their own bad experiences with their children’s haircuts that led them to find more patient stylists or more often to cut their children’s hair themselves. Had I made a comment, I would have fallen into that third category, the walk-away-and-move-on-with-life autism parent. After a few bad experiences with having Alex’s hair cut at the barbershop (through no fault of the barbers, who handled him remarkably well) when he was young and had sensory issues, I decided to learn how to cut his hair myself. Perhaps because we were not refused service, I didn’t feel the righteous indignation she described. Moreover, I tend to avoid confrontation and would prefer to walk away from uncomfortable circumstances than to make a point.

As I considered the story of the mom who wanted everyone to know that a stylist who could not cut her son’s hair denied him a haircut, I wished that she had focused on the positive outcome instead. Certainly, when anyone rebuffs our children, we feel anger that someone treats our children badly. As autism parents, we feel perhaps even greater indignation because our children’s disability makes their lives more difficult. On the other hand, over time I have found that people who walk away from our children are a blessing. In our experience, we have found that as professionals who worked with Alex have left for various reasons, their replacements were even better because they provided what he needed at that time. Those who cannot or do not want to work with our kids have no place in our lives. When they close the door, we look for the windows, the opportunities to find better alternatives. For her, she found a stylist who was willing and able to cut her son’s hair. For me, I decided to master a new skill, learning to cut Alex’s hair myself, which has made our lives easier and saved us a few bucks in the process. In addition, this tackling of something I didn’t think I could do developed my confidence so that I could take on other tasks, such as learning to give Alex vitamin B12 injections. Over the years, I have learned that nothing is wasted in life, or as the last line from one of my favorite movies An Unfinished Life wisely states: “And it looked like there was a reason for everything.” Often, the disappointments lead us to circumstances even better than we could imagine.

Several years ago, we realized that Alex couldn’t handle celebrating Christmas with the extended family. Although we tried everything we knew to make the family gatherings less overwhelming for him by giving him time and space away from the group, he found the experience upsetting. The last Christmas we celebrated as an extended family, we left with Alex and me both in tears, he in sensory overload and I in emotional overload that he was so upset. After that, we decided to celebrate Christmas at home with just the three of us, quiet and peaceful, yet disappointed that we could not be with the rest of the family. To ease the sense of loss, family would come to visit us in smaller groups that Alex could tolerate. While this compromise was the best solution for our circumstances, we hoped that someday we could celebrate with a family gathering on Christmas, as most families do.

Thanks to healing from medication, therapy, time, and answered prayers, Alex was finally able to enjoy a family gathering on Christmas this week. Instead of being overwhelmed by all the activity inherent when fourteen people and a dog are in the same room, Alex was happy to be with people he loves and who love him. Not only did he behave appropriately, but he also was content to be in a situation that used to upset him. After all these years, we finally had the family Christmas most people take for granted. While I was tempted to mourn for the lost years, wistful for what we had missed and what autism had taken from us, I focused instead on gratitude for what we had been given. Moreover, this Christmas has been even sweeter because we had to wait for that “typical” Christmas denied to us for so long. What was once bitter is now only sweet, and our joy is an even greater blessing, making us look ahead to the new year with anticipation and expectation that 2015 will be our best year yet.

“Instead of shame and dishonor, you will enjoy a double share of honor. You will possess a double portion of prosperity in your land, and everlasting joy will be yours.” Isaiah 61:7

ABLE Act: An Early Christmas Gift

 

This week Alex and many other Americans like him who have developmental disabilities received a wonderful early Christmas present. The passing of a new law known as the ABLE (Achieve a Better Life Experience) Act of 2014 will allow parents to save money for their children who have disabilities without fear of losing benefits. The purpose of this act is to help and encourage families to save funds for their loved ones with disabilities to help provide for their needs. These funds would supplement any government disability funding without fear of losing these important resources. Up until this time, parents have been discouraged from establishing savings accounts for their children with disabilities because these children cannot have their own assets totaling more than $1000 or $2000, depending upon government agency regulations, without fear of losing disability benefits, such as Medicaid or Social Security’s Supplemental Security Income (SSI).

First introduced in 2008, ABLE was promoted by parents of children with special needs as a program similar to those for parents wanting to save money for their children’s college funds. The bill in its current form was introduced last year on February 13, 2013, and was sponsored by Representative Ander Crenshaw, a Republican from Florida. The bill overwhelmingly passed in the U.S. House of Representatives on December 3, 2014, with a vote of 404-17. As a bipartisan effort, Senator Bob Casey, a Democrat from Pennsylvania, and Senator Richard Burr, a Republican from North Carolina, sponsored the bill in the U.S. Senate. This week, on December 16, 2014, Alex’s twenty-third birthday, the Senate also overwhelmingly passed the ABLE Act with a vote of 76-16. On Friday, December 19, 2014, President Obama signed the ABLE Act into law. Not since the enactment of the American with Disabilities Act (ADA) of 1990 has there been such significant legislation enacted to benefit people with disabilities until the signing of the ABLE Act this week.

Essentially, ABLE amends the Internal Revenue Tax Code to allow the use of tax-free deferred savings accounts for individuals with disabilities. Families may use these funds—up to $100,000—to cover expenses for education, housing, transportation, and medical expenses. Under the law, the disability must have been diagnosed before the age of 26, and the child must receive Supplemental Security Income through Social Security. Previously, parents were discouraged from putting aside financial resources for their children with disabilities, fearing that their children would lose important disability benefits. In addition, parents had to make sure their children had limited resources of their own. To ensure that their children would not lose benefits by inheriting assets, parents had to make certain that their estates would not go directly to the children with disabilities but to special needs trust accounts instead.

Because we only recently became aware of the problems of Alex having his own financial resources eventually, we have always set aside money in savings with the idea that he would need money in the future. Knowing that Alex can have limited finances in his own name, we have made certain that his savings account never has more than the maximum the state will allow him to have without losing his benefits that pay for his therapies and any supports he may need in the future. However, Ed and I have also saved money for Alex’s future needs that the ABLE Act will allow us to provide for him securely. As parents, we have a responsibility to take care of our children the best we can, and the ABLE Act permits us to provide for our children with disabilities without penalizing them or us for doing what is right, saving money that can be used to meet their needs. Along with our many blessings we have enjoyed this past year, we are thankful that the American politicians saw the needs of families raising children with disabilities and passed the ABLE Act into law, which will benefit so many families now and in the future.

“And this same God who takes care of me will supply all your needs from His glorious riches, which have been given to us in Christ Jesus.” Philippians 4:19

Twenty-Three

 

In two days, Alex will celebrate his twenty-third birthday. Twenty-three years ago, we were anticipating his birth, but we thought he would not arrive for nearly a month. Of course, predicted due dates meant nothing to him, and he was our early Christmas gift in 1991, making his entry into the world three and a half weeks early. Twenty years ago we were enjoying Alex’s toddler years, a little concerned about some delays and quirks but assured by professionals that he was fine. We would not receive a diagnosis of autism that would impact our lives for another year.

Three years ago, in the midst of major turmoil that would require intensive intervention for Alex, we could not see ahead to the peaceful and content existence we now savor, thanks to therapy, medication, and healing. When we look back over all the ups and downs of the past twenty-three years, three constants remain—our faith in God that sustained us, our hope that Alex would get better, and our unconditional love for each other. In tribute to Alex, our gift from God, I offer an adapted version of Martina McBride’s beautiful song, “In My Daughter’s Eyes, ” with lyrics by James Slater.

“In my son’s eyes I am a hero. I am strong and wise, and I know no fear. But the truth is plain to see: he was sent to rescue me. I see who I want to be in my son’s eyes.”

“In my son’s eyes everyone is equal. Darkness turns to light, and the world is at peace. This miracle God gave to me gives me strength when I am weak. I find reason to believe in my son’s eyes.

“And when he wraps his hand around my finger, oh, it puts a smile in my heart. Everything becomes a little clearer; I realize what life is all about. It’s hanging on when your heart has had enough. It’s giving more when you feel like giving up. I’ve seen the light; it’s in my son’s eyes.”

"In my son’s eyes I can see the future, a reflection of who I am and what will be. Though he’ll grow and someday leave, maybe raise a family, when I’m gone, I hope you’ll see how happy he made me. For I’ll be there in my son’s eyes.”

While being Alex’s mom has taught me many important lessons, one stands out as I look back on the past twenty-three years. Although we don’t know what the future holds, we do know who holds our future, and we are thankful that God holds Alex and us in the palm of His hand. Happy Birthday to our precious son!

“Yes, You have been with me from birth; from my mother’s womb You have cared for me. No wonder I am always praising You!” Psalm 71:6

Advent: Waiting, Anticipating, Preparing

 

This week, I have been thinking about Advent, the Christian observance leading up to Christmas, the celebration of Christ’s birth. While the source of the word Advent comes from the Latin adventus meaning arrival, these four weeks leading up to Christmas are often seen as a time of waiting, anticipating, and preparing. Often the busy season of activities, such as shopping, wrapping gifts, and decorating, distracts us from the primary focus of celebrating the birth of Christ. As I watch Alex count down the days on his various calendars to his upcoming birthday and Christmas, I notice that he primarily anticipates his favorite days of the year, knowing that I will take care of preparing for the celebrations. He trusts that I will make certain those days are as special for him as he imagines that they will be. Fortunately, he has learned patience over time, which makes the waiting easier and the anticipating sweeter.

Like Alex, I have learned patience over time, which is a lesson autism has taught me. Because Alex’s development has not followed the typical patterns and timelines, I have had to trust that milestones will eventually happen. Waiting often becomes a way of life for us, whether it be sitting in waiting rooms for doctors and therapists, waiting for paperwork to be processed, or waiting for Alex to finally master a skill. One blessing of this waiting is that when the appointed time, the answer, or the accomplishment finally arrives, the celebration is even better.

For two and a half years, Alex was on a waiting list for an excellent day program for adults with disabilities. When we first visited the facility and decided that they could offer him exactly what he needed, we prayed that we wouldn’t have to wait long before he could enroll there. However, various circumstances slowed the process, and we felt frustrated that his placement was delayed. Although we were told that he would be considered after a major construction project was completed that expanded their program, another year passed with no word that he would be enrolled. In the meantime, I knew that sitting around waiting to hear from them was wasting time, and we set out to make sure Alex was engaged in various programs that helped him develop his skills by adding recreational and music therapy to the behavioral therapy that was already in place. We filled his schedule with activities not only to keep him busy and active but also to prepare him better once the time came for him to go to the day program.

Last month, the day program for which we had been waiting called to let us know that Alex’s name had finally come to the top of the list, and he was eligible for enrollment. While we should have been celebrating an end to a long wait, we felt conflicted instead. Although the day program offers many opportunities, Alex is thriving under the program his case manager, therapists, and we have put together while we were waiting for an opening in the day program. Besides not wanting to make changes when things are going so well, after prayerful consideration and consultation with our trusted team of professionals who work with Alex, we decided that the day program we had wanted so badly for Alex at one time was not right for him at this time. Consequently, we politely thanked the agency and declined their offer, hoping that another client who has been waiting a long time like we have will be delighted for the chance to enroll. While we were waiting and anticipating, we were also preparing, and these preparations led us away from what we had originally planned to something even better for Alex.

Similarly, we spent a great deal of time waiting for respite services for Alex. After waiting several months for services from one agency, we decided that their program wasn’t ideal for what we needed. They required a minimum of four-hour blocks of respite and preferred that service take place at their respite care facility instead of in the family home. For us, the longer blocks of time and taking Alex to a place twenty minutes away wasn’t ideal, so I began searching for other options that would work better for us. After seeking other parents’ input and finding an agency less than five minutes away that offers two-hour blocks of respite care time in our home, we decided to switch respite care providers. However, our waiting was not done yet.

Although the new agency eagerly welcomed us and moved along the paperwork quickly, assigning a respite care worker for Alex did not happen as rapidly. Despite prompting from our case manager, the person in charge of finding a respite care worker failed to provide one. As we waited for months, I kept telling our behavioral therapist that I was in no hurry because I knew that the right person to work with Alex would come along when the time was right. Finally, after nearly a year, the person who was supposed to assign a respite care worker left that agency, and a new employee was assigned to Alex’s case. Immediately, she found an ideal respite care worker for Alex—after we had waited nearly a year with that agency and over a year and a half with the previous agency. As I had believed, God had selected the right person for Alex. She is about his age, has a calm and sweet personality, shares many of his interests, and understands autism well because she has family members who have autism. While we waited patiently for the wrong people to move out of the way and the right people to move into our lives, Alex was preparing by improving his social skills so that he could interact with his respite care worker and enjoy their weekly visits, which has certainly made the wait worthwhile.

Through our experiences with waiting for what’s best for Alex, we have learned to anticipate that everything will work out in the end. Sometimes plans change, and other times, we must anticipate that all the pieces will fall into place eventually. In the meantime, we keep ourselves busy and moving forward by preparing for what is to come, knowing that God has a good plan for Alex. With that in mind, we keep waiting, anticipating, and preparing for Alex to continue making good progress and to continue healing, all the while thanking God for all He has done to bring us this far.

“The Lord will work out His plans for my life—for Your faithful love, O Lord, endures forever. Don’t abandon me, for You made me.” Psalm 138:8