Sunday, February 22, 2015

Onward and Upward

 
This past week, we met with Alex’s support team for his quarterly meeting. Since he receives state disability services, these meetings are required every three months to monitor his progress, plan for the upcoming months, and discuss any concerns that have arisen since the last meeting. For these meetings, his case manager, behavioral therapist, music therapist, and a representative from the agency that provides respite care and day programs meet with us. Essentially, these meetings resemble annual case conferences for special needs students who have IEP’s.

Because Alex is an emancipated adult; that is, we have decided not to declare him legally incompetent at this time and are therefore not his legal guardians, his presence is required at the meetings. As his parents, Ed and I can advocate for him, but Alex ultimately can make decisions about his support program. Fortunately, he is quite content with his team of professionals and the work they are doing with him. Consequently, my main roles in these regular meetings is to play hostess since they meet in our home and to help Alex navigate the process, explaining what others are saying as needed and translating for him when his speech is difficult to understand. With several people in the room at the same time, he sometimes becomes confused as to whether a question is addressed to him or not. Sitting beside him, I often gently tap his leg to let him know that he is being questioned so that he realizes that he needs to provide an answer. At times, questions are directed to me, and I try to respond as clearly as possible to provide an accurate report of Alex’s current state.

To be honest, I felt a little disappointed right after the meeting concluded. Because Alex has made great progress in the past three months, adjusting amazingly well to his new computer class and making significant improvements in his behavior by showing more patience and flexibility as well as managing his anxiety through coping techniques, I anticipated that we would simply celebrate his achievements. While his therapists noted his improvements, they also focused on areas that still need improvement, namely his tendency to talk too softly, his need to be reminded to use manners by saying please and thank you, and his need to develop greater independence in daily living skills. While I value these skills, I’m delighted that he has overcome two huge hurdles that negatively impacted our lives and led to our getting services for him in the first place.

When Alex’s behavior plan was first written two and a half years ago, he desperately needed to improve three areas: physical aggression, property destruction/mishandling, and inappropriate social behaviors. Thanks to therapy, medication, and maturation, Alex has learned to handle his anxiety appropriately so that he doesn’t resort to aggression or throwing things for attention. This improvement has made our lives so much easier, not worrying that he might have an all-out meltdown. Also, his behavior improvements have permitted him to go more places in public because we don’t worry about him behaving badly. Essentially, our lives have changed so much for the better with the disappearance of the physical aggression and property destruction that we could be satisfied with just mastering those two areas.

However, we also know that Alex also needs to improve his social skills, which his behavior plan defines as not invading other people’s personal space, including not touching them or their belongings, covering his mouth when he coughs or sneezes, and not talking too quietly to be heard or not responding at all. Certainly, as he interacts with more people and goes out into the community more, these skills will serve him well. Yet, I thought after he learned to control his angry outbursts, we might enjoy a plateau period where we just rested a bit, grateful that our lives were finally peaceful. Instead, the meeting this week reminded me that we need to keep moving forward to help Alex fulfill his potential. Yes, he is much better than he was, but his therapists believe that he can continue to get even better and will push him to improve his social skills until he masters those, too. They reminded me that “good enough” is selling Alex short because he can be better than that.

As I reflected more on the meeting, I was able to get past focusing on the weaknesses they discussed and the work we still need to do as his support team and to hear why they believe he can overcome those issues that still linger. They describe him as “smart” and “capable”; they see beyond the typical autism behaviors of social impairment to what he can achieve. Also, I realize that when he masters all these goals, he will need new ones, and at some point, he may not need all the support he is currently receiving. As much as I’d like to rest on the peaceful plateau I imagined, I know that we need to keep moving onward and upward so that Alex can achieve what he is capable of doing.

Looking back, I can recall various tasks that seemed unending and perhaps even impossible. We wondered if Alex would ever become toilet trained, and eventually he did learn to go to the bathroom independently, which made our lives easier. We wondered if we would ever be able to have a conversation with him because his language skills were so weak, and now we can talk with him, despite some lingering speech issues, and find ourselves amused and amazed by what he tells us. We wondered if we would ever be able to take him out in public and trust that he would behave himself, and now we take him someplace nearly every day, not worried that he will misbehave and enjoy watching how happy it makes him to be out and about in the world. Consequently, I know now that Alex has great potential, and I need to be reminded that he can overcome these difficulties with time, patience, and support.

While I first thought his support team was not fully appreciating what Alex has accomplished recently, I can now recognize that they see him more objectively than I can. As his mother, I focus on what he has done, but his therapists are looking forward to what he can do. For years, Ed and I were unable to find professionals who could help Alex, and now we are blessed with a group who not only understand him as he is but also can envision what he can be with time and intervention. Working with them, we know that we will move onward and upward, not resting on what we’ve already accomplished, but knowing that Alex can, indeed, keep improving, master goals, and reach his full potential.

“Not that I have already obtained all this, or have already arrived at my goal, but I press on to take hold of that for which Christ Jesus took hold of me.” Philippians 3:12

Sunday, February 15, 2015

Computer Class

 
As I have mentioned in previous blog entries, we have tried to enroll Alex in a good day program for adults with developmental disabilities for over two years because we wanted him to have the opportunity to socialize with peers. However, his past behaviors raised red flags for the day program we felt would be best for him, despite the improvements he has made over time with medication and behavioral therapy, and they placed him on a long waiting list. In the meantime, we filled his schedule with music and recreational therapy and two hours a week of activities with a caregiver who is about his age. Also, Ed and I have kept Alex busy by taking him to various stores, restaurants, concerts, and sporting events so that he could engage in typical activities. Thankfully, this waiting period gave Alex time to learn coping skills for his anxiety as well as appropriate social skills to use in public.

In December, the day program we had chosen finally had an opening, but we declined the offer. Even though we had thought this program was perfect for Alex, we no longer felt that it was right for him. For one thing, he would have to travel about a half hour each way to get there, and we didn’t think traveling for an hour every day was a good use of time for him. Also, the program had grown during the time we were waiting, and we were concerned that the number of clients and the increased size of the facility would overwhelm Alex. In addition, Alex’s behavioral therapist and case manager, who frequently visit this program to see other clients of theirs, agreed with our decision not to send him there because the program no longer seemed ideal for him.

Instead, Alex’s case manager had told us of a new, much smaller day program that opened last spring. Along with the smaller size, the program appealed to us because their location is less than five minutes away from our home. After touring the facility, we knew that Alex could thrive there; however, their director also had concerns about Alex’s past behaviors. Thanks to the intervention of his behavioral therapist and case manager, they were able to convince the program director to allow Alex to have a trial period to see how he would do in that setting and to prove that he has made significant progress in three years. Knowing Alex’s strengths, his case manager suggested that he could take a computer class there, and they agreed to enroll him for an hour once a week to start.

In January, Alex and I met with the young woman who would be working with Alex and teaching him computer skills. Alex’s behavioral therapist, who met with her to give a briefing on Alex’s strengths and weaknesses, and I were both impressed with her warmth and enthusiasm and felt she would work well with him. So as not to disturb Alex’s afternoon therapy schedule, we decided that he would go to the day program on Thursday mornings from 10:30-11:30, which meant that Ed would get him ready in the morning and bring him to the computer class each week since I’m at work at that time. Even though Alex would have to tape his beloved The Price Is Right episode and watch it later, he was eager to go to “computer school.”  After waiting for so long to get him into a day program, Ed and I hoped that Alex would behave himself so that he could continue and wouldn’t be asked to leave. Fortunately, he has done even better than we could have hoped.

The first week, his teacher assessed his computer skills, which seemed to be stronger than she thought, as he was able to do all the tasks she asked of him. She even had him create a flyer for their agency advertising an upcoming event, and he was able to type all the text correctly and with her guidance add clip art to illustrate the text. After he finished all the work, she allowed him to take a break, telling him that he could play computer games of his choice. However, he apparently did not want to take a break and preferred to work the entire time, so he simply sat there silently and waited for her to make other suggestions. I suspect that she didn’t realize how quickly he would be able to complete the work, and the next week, she had more planned for him to do.

The second week, an activity that could have thrown Alex for a loop thankfully did not. When he arrived, they were getting ready to have a fire drill. After his teacher explained what was going to happen and what Alex would need to do, he complied with her directions and didn’t seem fazed by the activity at all. After starting his session by standing out in the cold, Alex cooperated beautifully with his lesson on spreadsheets, and Ed said that his behavior was perfect. In addition, she introduced him to the other clients in the day program, three young men, one of whom commented about Alex, “He’s really tall.” At the end of the session, his teacher gave him homework in the form of charts he was to fill out regarding prices for his favorite stocks, and he happily and faithfully completed this assignment every day until his next class when he would enter this data on a spreadsheet he created.

The third week, another complication arose at the beginning of class when his teacher was late because she was working with another client. Nonetheless, Alex handled this disruption without incident, going ahead and starting to work on the computer, as she told him to do while he was waiting. Again, Ed noted that Alex’s behavior could not have been better, even when his teacher was flustered because she could not get the computer printer to work and had to make some adjustments to what she had planned. Alex easily accepted the changes to what she had planned. Moreover, he really liked the homework she gave him for the next week—tracking the daily weather data for the following week.

Last week, once again Alex calmly adapted to complications as he and Ed had to drive in a blizzard to get to computer class. As he had in previous sessions, Alex cooperated and completed his tasks exceptionally well. Along with his spreadsheet activities, he showed his knowledge of Spanish, math, and parts of speech as he completed some computer drills on these subject areas, and his teacher seemed impressed with his skills. Because it was the day before Valentine’s Day, the other two instructors gave Alex valentines, and one had prepared a treat bag filled with gluten-free snacks that Alex could have on his restricted diet, which was especially thoughtful. Also, the other instructor commented that she always looks forward to Thursdays because she gets to see Alex. Echoing her kind sentiments, Alex’s instructor told me in an email last week that he is doing very well and that he is “such a pleasure to work with.” As parents we couldn’t be prouder of him, and we know that he is exactly where he is meant to be in this smaller program where he has been able to shine and to endear himself to the staff who see the good in him.

Although we hope that eventually Alex will be included in more activities at the day program, we are delighted that he has adapted nicely in such a short time and pray that he continues to do well. One night as he and I were talking about his computer class, he enthusiastically told me how much he liked the class. Then he earnestly asked me if he could still be a meteorologist or an astronomer, the dream jobs he has talked about since he was a little boy. I think he put those dreams on hold for a while, and the success he is having now with his computer class has reminded him of what he would like to do someday. While I don’t know what the future holds for Alex, I pray that he will have opportunities like this computer class to develop his skills and learn from people who bring out the best in him, and perhaps one day he can be the scientist he aspires to be. As long as he finds joy and fulfillment in whatever he does, we will be grateful, knowing how far he has come.

“See, the former things have taken place, and new things I declare; before they spring into being I announce them to you. Sing to the Lord a new song, His praise from the ends of the earth…” Isaiah 42:9-10

Sunday, February 8, 2015

I Don't Know What Causes Autism

 
This week, Huffington Post featured a heartfelt blog entry written by autism mom Carrie Cariello entitled “I Know What Causes Autism.” [To read this essay, please click here.] With all the uproar regarding the recent outbreaks of measles at Disneyland and a Chicago area day care center, this essay has garnered quite a bit of attention because she addresses the controversy of vaccines and autism. To summarize, after she lists several potential causes of autism proposed over the years, she dismisses all of them “for now,” proclaiming that her son’s autism is genetic: “So, for now, I’m going to believe that Jack’s autism is because of DNA and RNA and heredity.” Furthermore, she asserts, “He’s exactly the way he’s supposed to be.” As she explains, “If I start running around declaring autism an epidemic and screeching about how we need to find out where it’s coming from and who started it and how to cure it, well, that sort of contradicts the whole message of acceptance and tolerance and open-mindedness.” Although I appreciate her candor in explaining her opinion regarding the cause of autism, I must respectfully disagree.

Maybe it’s because I’ve been an autism mom more than twice as long as she has.

Maybe it’s because we have watched Alex struggle with puberty and hormonal changes, something she probably hasn’t yet experienced with her son.

Maybe it’s because I’ve had more time to research and compare notes with other parents whose lives parallel ours.

Maybe it’s because we’ve run tests that have diagnosed mercury and aluminum poisoning and know that both of those toxic metals exist in vaccinations.

Maybe it’s because I know that you can love the child unconditionally but hate the disability passionately yet still be accepting and tolerant.

Maybe its because I don’t believe that Alex is exactly the way he’s supposed to be. I believe that autism has robbed him of things typical people his age enjoy, and I intend to do everything in my power to make sure he will not always be denied those opportunities.

On Friday, the discussion of the measles outbreaks arose among a group of my colleagues. One sympathetic friend noted how awful it was for those tiny babies to have the measles and how miserable they must be. I thought of how awful it is for children with autism who, unlike the vast majority of children with measles, don’t get better after a few days. Our oldest and wisest colleague noted that he had been immunized against both measles and mumps, but still got both diseases as an adult and questioned the effectiveness of vaccines. The youngest colleague, who is cocksure about everything, claimed that he had read “all twelve of the case studies,” and was certain that vaccines don’t cause autism. Although I was torn between wanting to slug him or to enlighten him on the autism research I’ve been doing for twenty years, I decided that either would be a waste of time and energy because he had already made up his mind, and I left the room.

Immediately following me was my colleague/close friend/confidante who knows my story well and who knew that I had left without a word after deciding that “Discretion is the better part of valor.” As the mother of two small children, she has struggled with the issues of vaccine safety herself, wondering and worrying if she is doing the right thing, and I have supported her decisions, just as she has supported mine. For the record, Alex received all of his childhood immunizations on time according to the CDC schedule because at that time little was known about possible links between autism and vaccines and because I believed that was the right thing to do at the time. Although I don’t know for certain that vaccines caused autism in Alex, I certainly believe they were a contributing factor for him. Consequently, I understand the dilemma parents face in deciding whether or not to vaccinate their children.

As my beloved friend and I discussed the issues of immunization rationally and respectfully, we came to the same conclusion that as mothers we want what’s best for our children and pray that we make the right decisions. As she wisely pointed out, we will love our children no matter what problems we face. However, we know that life is hard, and we don’t want our children’s lives to be harder than they need to be. Therein lies the crux of my drive to find out what causes autism and why I can’t be satisfied until I know the answer: I don’t want life to be harder than necessary for Alex.

If we can find the cause of autism, then maybe we can find effective treatments and potential cures. I want people to be as outraged about the autism epidemic as they clearly are about the measles epidemic so that they will work harder and faster to help those affected by autism. Moreover, I don’t believe that this is how God intended Alex to be; I believe that Alex is meant to be healthy and to live an abundant life. Accepting what is instead of seeking what can be feels wrong to me, and I have hope that Alex will overcome autism one day. Until then, I’ll keep searching for the cause of autism so that Alex and others like him can be healed and so that other families don’t have to worry that their children will face the struggles those children with autism have endured. Unlike fellow autism mom Carrie Cariello, I don’t know what causes autism, and that frustrating uncertainty mightily motivates me to keep looking for an answer.

“Lead me by Your truth and teach me, for You are the God who saves me. All day long I put my hope in You.” Psalm 25:5

Sunday, February 1, 2015

Autism Connections

 
Somehow we just know. Maybe it’s the lack of eye contact, the toe walking, or the hand flapping, or even more likely the way the parent helps the child navigate a public place, but those of us whose families have been touched by autism recognize each other almost immediately. Knowing that staring is hurtful, we watch surreptitiously to confirm our suspicions that they, like us, belong to the autism club none of us ever wanted to join. If our understanding gaze is met, we smile and try to convey that we empathize. Often, we do not speak—like our children with autism, we’re not sure what to say in the situation. Somehow just knowing that we’re not alone comforts us and reassures us that others are dealing with lives similar to our own.

Other times, the signs are more obvious, and we can connect beyond the knowing look and sympathetic smile. For example, last summer when Alex went for his routine blood tests, which he thankfully finds fascinating and handles amazingly well, the lab technician interacted with him with such ease and compassion that I suspected she had some first-hand knowledge of autism. As I noticed an autism awareness ribbon on her identification lanyard, she told me to ask for her specifically whenever Alex needed blood draws and explained that she, too, was the mother of a child with autism. Quickly, we compared notes, discovered several similarities between our children, and felt a sense of relief to talk with another parent who understood raising a child with autism.

Similarly, when we took Alex a few months ago to a new doctor for a check up, I was pleased to observe that the nurse knew how to engage him and make him feel comfortable. While she spoke to him sweetly, she never treated him like a child, nor did she act patronizing to him because of his disability. Once again, I noticed that she was wearing an autism awareness pin on her identification lanyard, and I asked her about her interest in autism. She explained that another nurse in the office has a son with autism and gave all of the nurses autism awareness pins to wear, which I thought was a great idea. Not only could this autism mom and her co-workers promote autism awareness, but also by wearing the pins, they immediately identified themselves as supportive to any families dealing with autism. All of those nurses with their autism awareness pins demonstrated that their office was a safe place where parents knew their children with autism would be welcomed and understood.

Other times, we dance around the details before we figure out our common link of autism. A few months ago, I was talking with my doctor’s nurse who was checking my blood pressure, and I commented that my blood pressure was amazingly good, despite the stress of teaching middle school kids and raising a “high-maintenance” son. Like typical mothers, we chatted briefly about our sons before discovering that both of our boys are on the autism spectrum. As in other similar situations, I felt relief to find someone who truly understands my situation as an autism mom and wanted to share as much information as possible within a short period of time. Now that she and I know that bond we share, we will smile knowingly at each other, cognizant of how our lives parallel.

Last night, we took Alex to Target as a reward for a good week in which he was cooperative with all of his therapists and us. Happily looking around at various items in the store, he was delighted to find a special 80th anniversary edition of Monopoly, his favorite board game. He was even more delighted when I reminded him that he had Target gift cards his aunts and uncles had given him for Christmas that he could use if he wanted to buy the game. Immediately, he decided that he wanted to spend his gift card on that special edition game and cradled the box in his arms as he carried it to the checkout counter. As Alex stood patiently waiting to check out, smiling because he found the special game, I noticed the cashier watching him. Unlike the mean girls in Burger King who stared and snickered at him last week, this young woman had a kind way about her. Of course, Alex was oblivious to her because he was just happy to be getting the game he wanted. She asked him, “Is this game for you?” and he just smiled. She then told him that he hoped he liked it, and I prompted him to thank her, which he did quietly.

After she placed the game in a bag and handed it to Alex, he and Ed moved out of the line and waited by the door for me to pay. Hesitantly the cashier said to me, “I miss my old job and the special needs kids I worked with.” I knew she recognized Alex’s autism and wanted to let me know that she understood him. Addressing the elephant in the room, I told her that he has autism, which confirmed what she probably suspected, and she told me that her sister has autism. Once again, members of the autism family club had found each other, and we nodded knowingly. She asked me about his functioning level, and I explained that he is verbal, even though he doesn’t talk a lot, and he’s toilet-trained, so we are fortunate. Then she confided something that made me know why she wanted to engage me in conversation.

“I’m worried that my ten-month-old baby girl has autism.” She explained that because her sister has autism and because she has seen signs in her daughter, such as hand flapping, she has concerns. Listening sympathetically, I nodded and hoped that her suspicions are wrong. She told me that she would keep watching her baby and if the signs continued, she would have her evaluated for autism. Trying to reassure her as the line of customers behind me reminded me I had little time, I told her that I was sure she was doing the right things. I also told her that I hoped her suspicions were wrong and that her baby would be all right, but I also reminded her that because of having a sister with autism and working with special needs kids, she would know what to do, and her daughter would be fine. While I hoped I had said the right things to reassure her, her eyes filled with tears as she smiled and thanked me.

Once again I realized that Alex has an important role in life as an ambassador for autism. People recognize his weakness in the disability, but they also see the strength in his joy and the progress he has made. Because of him, we have connected with wonderfully compassionate people who understand what we have faced because they have dealt with similar issues. Although I wish that none of us had to endure the difficulties autism presents, I’m thankful for the support we families can give each other as we wait for our children to be healed.

“And this hope will not lead to disappointment. For we know how dearly God loves us, because He has given us the Holy Spirit to fill our hearts with His love.” Romans 5:5

Sunday, January 25, 2015

Making Good Choices

 
When Alex first began behavioral therapy, the primary goal was to teach him to deal with his anxiety and aggression. However, as he has learned to manage these issues, his behavioral therapist has shifted the focus to helping him improve his social skills, a common difficulty for people with autism. To teach him appropriate ways to interact with others, we practice at home by discussing how he should behave and by using social stories so that he knows what he should and should not do. Moreover, we give him opportunities to practice what he’s learned by taking him to public places, such as restaurants, stores, and concerts. During these outings, we have been pleased that Alex demonstrates that he has learned well the lessons his social stories have taught. On the other hand, I have been astounded by the rudeness of some of the people we encounter out in public. While my temptation has been to say, “My son has autism, what’s your excuse?” I realize that they have not had the benefit of therapy that has taught him to interact appropriately. Consequently, I’d like to share some of the social skills lessons for those who could benefit from what Alex’s behavioral therapist calls “Making Good Choices.”
USE YOUR CALM DOWN SKILLS

Because Alex can become anxious and overwhelmed in certain situations, he needed to learn techniques to help calm him so that he doesn’t have meltdowns. He can listen to music, do deep breathing exercises, and/or count to ten in various languages (English, Spanish, French, German, and Turkish) to help him settle down. Although he may need to be reminded about these techniques when he’s upset, Alex can use them effectively to manage his anxiety. Last week, we encountered someone who could also benefit from these calm down skills when we were going with Alex’s behavioral therapist, Jennifer, for our weekly outing to practice social skills. As we approached the fast food restaurant where we were headed, I saw a fire truck and ambulance with flashing lights blocking our path and knew we would have to take an alternate route. Apparently, my action angered another driver who didn’t see why I had to turn, and I could tell from his facial expressions and from my limited lip reading skills that he wasn’t happy with me. To make sure I knew he was upset, he gave me the middle finger gesture. As Jennifer observed, “He wasn’t very friendly, was he?” While I put calm down skills to use so that I didn’t return any hostility, I realized that rude man should have been using his fingers to count instead of to insult me. Certainly, he needed some calm down skills so that he could make better choices.
USE YOUR MANNERS

We have worked with Alex to use polite phrases, such as, “Please,” “Thank you,” “You’re welcome,” and “Excuse me,” and he is still mastering saying them at the appropriate times and saying them loudly enough to be heard. However, I’ve noticed that many people who cannot use autism as an excuse also seem to have not mastered these skills. For example, we have practiced with Alex the scenario of saying “Thank you” when someone holds a door open for him, but I have found that some people seem to forget their manners when I’ve held doors open for them and say nothing to me. In addition, we’ve taught Alex to get out of people’s way when we’re in grocery store aisles or waiting in line, but I’m amazed by the people who stroll along, seemingly oblivious or even not caring that they are in someone else’s way. Also, Alex has learned by playing board games to wait his turn and to be ready when it is his turn so that he doesn’t make others wait. Sadly, some adults apparently have not learned this courtesy lesson, as I discovered in Panera Bread the other night when a couple held up the entire line, taking their sweet time to decide what they wanted and then taking unnecessary time to pay for their food, never once apologizing for their rude actions. Without a doubt, these types of inconsiderate people need to use their manners.

DON’T STARE

While Alex still struggles with making eye contact, a common issue found in people with autism, at times he finds something or someone interesting enough that causes him to cast a lingering look. Often, he may find someone’s voice engaging, or he may find children’s behavior amusing, and he watches them in delight. However, we remind him that staring is not polite. Apparently, not all parents teach their children this lesson. The other day, Alex, Jennifer, and I were at Burger King for our Friday social skills outing, and Alex had decided that he wanted to order his food himself. As he struggled a bit to order, the cashier was very sweet and patient with him, but I noticed two teenage girls staring at him and smirking. While my motherly protective instinctive reactions ranged from wanting to smack them to saying sarcastically, “Take a picture, it lasts longer!” to wanting to explain that he has autism, I realized that nothing I could say or do would teach these mean girls a lesson. Fortunately, Alex was oblivious to their rude behavior because he was so busy trying to use his manners. Following his lead, I used my calm down skills and my manners, and I didn’t stare back at them. As much as their behavior was hurtful, I could also feel sorry for them because unlike Alex, they either had not had loving people teach them how to act appropriately, or they were not working as hard as he is at using social skills. Not only am I thankful that Alex is trying to make good choices, but also that he never seems to notice those around him who fail to make those good choices. Despite the obstacles autism has put before him, he keeps striving to become a better person, and that good choice makes us proud.

“So let’s not get tired of doing what is good. At just the right time we will reap a harvest of blessing if we don’t give up.” Galatians 6:9

Sunday, January 18, 2015

A New Thing

 
As someone who likes to plan things down to the smallest details, I become frustrated when things don’t go as planned or when unexpected events arise, making me feel unprepared and anxious. In raising a child with autism, I have learned that I can make all the plans I want, but at the last minute, things may change suddenly to derail those plans. Consequently, life with Alex has taught me patience and flexibility. Most importantly, I have learned that God’s plans are always better than mine, and I need to allow Him to guide me so that I make the best decisions for Alex.

While waiting two and a half years for a day program that we had thought would be ideal for Alex, we kept hoping that Alex’s name would soon come to the top of the waiting list. As time passed, we sensed that his enrollment would not be imminent, which was disappointing because we thought that was the direction we were supposed to go. Instead, we worked with our case manager to develop an alternative program to help Alex make progress, adding music and recreational therapy and finding an agency that could provide respite care that better suited our needs than the previous agency had. In addition, our case manager found a new smaller day program located less than five minutes from our home for us to consider. While we were waiting for what we thought was the ideal day program, we were going to keep Alex busy and moving forward in developing his skills.

Two months ago the day program finally contacted us to let us know that Alex’s name had come to the top of the waiting list. However, we no longer felt that this program was the best placement for him now. The program we put in place for him as we were waiting, essentially our Plan B, had turned out even better than we had expected. God had led us to the right people who could help Alex. Therefore, we were not going to make drastic changes by setting aside what has been working well just so that Alex could attend the day program. After discussing all the pros and cons with our case manager and Alex’s behavioral therapist who agreed with us, Ed and I believed that turning down the offer of the day program was the right decision.

Although we were a little concerned about closing a door, we discovered that God had opened another door for us. About the same time, the day program near our home offered to teach Alex computer skills on a one-on-one basis. To start, he would go there for an hour one day a week, and he could increase the time and number of days as he acclimated to the new setting. This program sounded ideal because of its flexibility, convenience, and accommodation of Alex’s interests and abilities. However, once again, we were told we would have to wait a while to get this program started. Having waited over two years for the other program and nearly a year to get respite care started from this same agency, I decided that I could wait patiently. I knew that when the time was right, things would eventually fall into place.

Two weeks ago, the new day program contacted me, anxious to get started working with Alex on computers. The person who was arranging the details had just been transferred to the office here in town, and she was eager to get things rolling. Quickly, she arranged training with Alex’s behavioral therapist to learn how to work best with him, and she arranged a meeting with Alex and me to discuss the program she had planned for him and to answer any questions we had. While I was pleased that we finally seemed to be moving forward on this program, I was a little taken aback by how suddenly things were being put into motion after being on hold for a while.

Also, to enroll Alex, the agency needed paperwork showing that he had had a recent physical examination and a TB test. At first, this detail sent me into brief tailspin mode, as I thought we’d have to arrange for Alex to have a TB test and knew that I had no paperwork from his doctor regarding his physical this summer. After a little online research, I found that the Minute Clinic where we’ve taken Alex previously could do a TB test, which set my mind at ease. However, I then discovered that a chest x-ray could substitute for a TB test. Fortunately, before Alex had his wisdom teeth removed in November, he had to have a physical exam, an EKG, blood tests, and chest x-rays to make sure he was healthy enough for anesthesia. Because his regular doctor has reduced his hours, we took him to a new doctor for his physical exam. Fortunately, her practice offers online medical records for patients. After logging on to Alex’s account, I discovered everything I needed for the day program, and I printed out copies of the test results and doctor’s notes. Even though I had been reluctant to take Alex to a new doctor for his wisdom teeth exam, I realized that God had led us to her so that we would be able to access all the information we needed to enroll Alex in the computer class. God knew what we would need in the future and led us in the right direction.

After meeting with the young woman who will be teaching Alex computer skills and feeling positive about how nicely she interacted with him, I’m hopeful that this new addition to his schedule will work well. Of course, we always worry about how he’ll adapt to new situations and new settings, and we hope that he will put to good use the social skills we’ve worked hard to instill in him. As for Alex, he seems really excited that he’s going to be starting computer school this week. While he begins something new, we pray that everything goes smoothly and that this is one more piece of the puzzle that will allow him to reach his potential. In the meantime, we trust God, who made this path smoother by guiding and changing our plans, will lead Alex where he’s supposed to go and will give him the hope and future He promised.

“Behold, I am doing a new thing; now it springs forth, do you not perceive it? I will make a way in the wilderness and rivers in the desert.” Isaiah 43:19

Sunday, January 11, 2015

Vulnerability

 
This week U.S. News and World Report published an article online entitled “Is the U.S. Prepared for a Growing Population of Adults with Autism?” with the subheading, “More than 50,000 individuals with autism transition into adulthood each year.” [To read this article, please click here.] Parents of adult children with autism can easily respond to that essentially rhetorical question with a definitive no. The article points out that the majority of the more than 1.5 million diagnosed with autism are currently younger than twenty-two years old, and an “autism tsunami” is predicted as more children with autism become adults and need services. Of course, these services are quite expensive, and the article focuses on the staggering costs for taking care of these adults with autism. While that problem certain merits attention, parents of adult children worry more about how safe our vulnerable sons and daughters will be when we are not around to protect them.

In previous blog entries, namely “Protecting Our Children” (September 14, 2014), “Autism and Law Enforcement: A Safety Crisis” (June 9, 2013), and “Autism and Wandering: A Safety Crisis” (May 26, 2013), I have expressed my concerns about how bullies, wandering to unsafe places, and untrained police officers can pose threats to children and adults with autism, citing incidents where those with autism have been badly hurt and even killed. These news stories remind parents that we must be especially vigilant to guard our children with autism from those dangers, including those who may legitimately perceive them as threats. Because of our children’s impaired social skills, limited language, and tendency to wander, they may unknowingly find themselves in dangerous situations.

Around midnight on Christmas Eve in Greenville, South Carolina, police officers arrested a thirty-four-year-old man with autism walking on the sidewalk after he didn’t cooperate with their questioning. [To read this news report, please click here.] With his limited language skills, he couldn’t answer their questions and didn’t respond to their requests. His impaired social skills prevented him from behaving appropriately, and fear likely caused him to run away from the officers, who shocked him with a Taser and handcuffed him. Certainly, his noncompliant behavior made him seem suspicious and perhaps even threatening. However, after discovering that he has autism, charges were dropped against him. Unfortunately, he will carry that memory of an upsetting experience with the law, but this incident has demonstrated the need for police officers to have training in dealing with people with autism.

This week in Austin, Texas, a young man with autism became upset and ran away from his group home early in the morning. [To read this news report, please click here.] Agitated, he began pounding on doors of neighborhood homes. As he attempted to enter a home, the homeowner shot and killed him, fearing for the safety of his family. While this situation is terribly upsetting for everyone involved, many parents of adult children with autism understand how this could happen. When our fully-grown children become upset, their behavior can become so erratic that anyone would see them as threatening. Sadly, this young man with autism lost his life, and the homeowner protecting his family will have to live with this tragedy the rest of his life.

As these recent news reports demonstrate, the world is a dangerous place for people with autism who cannot communicate well and whose impaired social skills affect their behavior negatively. While parents do everything we can to protect our children and keep them safe, they may find themselves in danger. When I read essays written by parents of young children with autism who celebrate the disability and say that they wouldn’t change a thing about their child and that autism is part of their personality, I shake my head. While we love our children with autism unconditionally, we want their lives to be better and safer, but autism makes them vulnerable to dangers we can’t always keep at bay. Autism is no more a part of their personality than cancer or diabetes or any lifelong affliction that takes away from our children’s lives. Consequently, I continue to pray for a cure for autism so that my child and those like him can live life to fullest, participating in the world instead of being a misunderstood outsider. In the meantime, I also pray that God keeps Alex safe until that healing can occur and that He will guide and watch over him when we cannot.

“See, I am sending an angel before you to protect you on your journey and lead you safely to the place I have prepared for you.” Exodus 23:20

Sunday, January 4, 2015

Gut Feeling

 
Because so much is unknown about autism, parents of children with autism often rely upon what we sense is the right thing to do when we make decisions for our children. We sometimes think of those instincts as gut feelings, and we move forward based upon the adages of “Go with your gut” or “Trust your gut.” Because my faith leads me to believe that God places those feelings in my gut, I trust those instincts when making choices. While we tend to think of the gut in terms of its actual function as a key component of the digestive process as well as its symbolic identity as a part of decision-making, the role of the gut has expanded in recent research.

More specifically, new research indicates that the gut’s microorganisms (such as bacteria), known as the microbiome, significantly impact the brain. In the article “Gut-brain Link Grabs Neuroscientists” published in Nature on November 12, 2014, molecular biologist Sara Reardon explains that research shows that a connection exists between bacteria in the gut and behavioral conditions, such as autism. [To read this article, please click here.]

In 2014, the U.S. National Institutes of Health spent more than one million dollars on new research through its Human Microbiome Project to study the links between the microbiome and the brain. Through this research project, scientists hope to gain insights into how the microbiome affects humans as it both maintains health and causes disease. On November 19, 2014, neuroscientists shared their research entitled “Gut Microbes and the Brain: Paradigm Shift in Neuroscience” at the annual Society for Neuroscience meeting in Washington, D.C., promoting the significance of the brain-gut connection.

As neuroscientists begin to understand how gut bacteria affect the brain, three possible links have arisen. First, the gut bacteria seem to play a significant role in the immune system. Another potential link between the gut and brain is the vagus nerve that connects the digestive tract to the brain. In addition, the production of bacterial waste in the gut may affect the brain. For example, intestinal bacteria produce the important neurotransmitter GABA. Interestingly, children with autism often benefit from taking supplements of GABA, as it has a calming effect upon them.

Research has shown that children with autism tend to have gut microbiomes different from typical children. Specifically, the Nature article references a 2013 study entitled “Reduced Incidence of Prevotella and Other Fermenters in Intestinal Microflora of Autistic Children.” [To read this article, please click here.] This research focused upon analyzing stool samples of children with autism and typical children and found that children with autism tended to have fewer strains of gut bacteria than typical children do. Consequently, these missing strains likely influence their behavior and health. Moreover, the study found that children with autism had significantly lower levels of some strains of bacteria, particularly Prevotella, which is important for digesting carbohydrates and for metabolizing vitamin B1. Considering that many children with autism seem to crave carbohydrates, perhaps this lack of Prevotella causes them to consume carbohydrate-rich diets, trying to extract nutrients from these foods. In addition, children with autism often respond well to supplementation of vitamin B1, perhaps necessary because their bodies cannot metabolize this vitamin from food. By analyzing the gut bacteria, scientists can potentially determine what is lacking and how to address these anomalies.

Additionally, the Nature article refers to the work of Sarkis Mazmanian, a microbiologist at California Institute of Technology in Pasadena. In Mazmanian’s 2013 study, mice with some features of autism, notably gastrointestinal symptoms and stressed, antisocial behaviors, had lower levels of a common gut bacterium, Bacteroides fragilis, than normal. Also, they had higher levels of a bacterial metabolite, 4EPS, in their blood. When normal mice with leaky gut syndrome were injected with 4EPS, which seeped into the body through the intestinal wall, they also exhibited autistic behaviors.

In response to his research, Dr. Mazmanian notes, “That observation raises the possibility that some people with autism could be supplemented with therapies, such as probiotics, that target the gut instead of the brain, which is a much more complex and inaccessible organ.” Hence, this research offers a different approach to autism; instead of focusing upon treating the neurological symptoms, addressing the digestive tract becomes a potential source for healing. Indeed, many biomedical doctors have recognized the gut-brain connection in autism and have implemented treatments to address digestive issues, such as leaky gut and dysbiosis of the digestive tract, through gluten-free diets, probiotic supplements, and antifungal medications.

As we begin a new year, we anticipate what 2015 will bring. Over time, we have seen progress in Alex that we celebrate and appreciate. Nonetheless, we continue to pray for his complete healing, and this new research gives us greater reason to hope that, indeed, Alex will recover what autism has taken from him. In the meantime, I trust my gut and allow myself to be led by God that we will make the right choices so that Alex can be happy and healthy as we wait.

“My child, pay attention to what I say. Listen carefully to my words. Don’t lose sight of them. Let them penetrate deep into your heart, for they bring life to those who find them, and healing to their whole body.” Proverbs 4:20-22

Sunday, December 28, 2014

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

Sunday, December 21, 2014

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

Sunday, December 14, 2014

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

Sunday, December 7, 2014

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

Sunday, November 30, 2014

Reflection

 
As December begins tomorrow, many people will begin the countdown to Christmas—if they haven’t already started—with Advent calendars to keep track of the days left until December 25th. Since Alex loves numbers and calendars, Advent calendars hold a special place in his heart. In fact, we have two Advent calendars to count down the days: a wooden one with numbers that must be changed daily and a traditional German one with doors that open to reveal chocolate candies each day. In addition to our Advent calendars, Alex has started another countdown and has marked the days on our kitchen calendar. Like my seventh grade students who are ten years younger than he is, Alex is eagerly anticipating his birthday, and he started counting down the days a month in advance. While my students look forward to their thirteenth birthdays, marking their entrance into being teenagers, Alex is even more excited than usual about his birthday, which will be his 23rd. Every day, he excitedly comes to tell me how many days are left until his birthday on December 16th.

While Alex looks forward to turning another year older, I must admit that at times I would like the clock to stop. The older he gets, the more I fret about his future. When he was younger, I had goals in mind about what he would be able to accomplish by certain ages. Although some milestones eventually arrived on a delayed schedule, others still wait to be accomplished sometime in the future. While most young adults his age would be finishing college and starting careers, Alex still relies upon Ed and me for his basic needs. Certainly, he has made wonderful progress, which we appreciate and celebrate, but he still has a long way to go before he can be independent. Of course, Alex doesn’t worry a bit about life, and his unwavering faith reminds me to hold fast to the promise of Jeremiah 29:11: “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” I know that God has plans for Alex, but I still wonder what the future holds for him and what his divine destiny will be.

Several years ago, I was blessed to find an online ministry known as Children of Destiny, started by Christian ministers Jack and Rebecca Sytsema. After two of their sons were diagnosed with autism, they began writing daily e-mail devotionals with scriptures to support parents of children with autism, who, like them, needed encouragement and spiritual guidance. [To view Children of Destiny, please click here.] This online ministry has grown and helped many people during its twelve years of existence. Over the years, their devotionals have repeatedly reminded me to have faith when times looked bleak and to praise God when prayers were answered. Describing their family’s life with autism, the Sytsemas note, “While each intervention has helped them [their sons with autism] come to new levels of success, we firmly hold to the belief that the most powerful intervention we have brought into our sons’ lives has been to give them over to God and allow Him to order our steps.” Indeed, that surrendering our children to God proves the hardest, yet the most important step of faith we parents of special needs children must do. Moreover, the Sytsema’s declaration that these children with autism do have a special destiny, despite what limitations autism has placed upon them, reminds us how much they have to offer the world.

Last week, after I posted my blog entry about Alex’s positive interaction with a kind grocery store clerk, I received very positive feedback about that story from friends and family, who were touched by the sweetness of Alex and his “new friend.” While I never want Alex to be a bother to other people, I sometime forget what a blessing he can be to people other than Ed and me. We see the goodness and kindness behind his awkward social skills, but we wonder if others recognize his sweet soul, as well. After reading the blog entry, my cousin Amy reminded me in a loving note that Alex does, indeed, have much to share with others: “I hope you know what a blessing Alex is and the joy he brings to others. I say share your sweet wealth.” Similarly, another autism mom friend thoughtfully wrote to me in response to the story, “Alex touches more lives than he will ever know.” Their encouraging words made me realize that Alex is fulfilling God’s destiny for him. Maybe his job right now is to reflect God’s love through his joy for life, his love for people, and his trusting faith and abiding hope that everything will be all right in the end.

As Alex happily counts down the next sixteen days until he turns twenty-three, I need to put aside the disappointments that his life hasn’t turned out as I had planned and to share in the joy he finds in the simple things that others in their busy lives can often miss. Moreover, I must stop thinking about the things Alex can’t do yet and remember that God has His own countdown that I must trust will be the right time for everything. In the meantime, God keeps Alex busy with His own tasks, those far greater than I would have assigned, and certainly much more valuable because they truly reflect God’s glory.

“And all of us have had that veil removed so that we can be mirrors that brightly reflect the glory of the Lord. And as the Spirit of the Lord works within us, we become more and more like Him and reflect His glory even more.” 2 Corinthians 3:18

Sunday, November 23, 2014

The Kindness of Strangers

 
“Good Ways to Get People’s Attention” is one of the social stories Alex’s behavioral therapist has used to improve his social skills. Because words don’t come easily to Alex, he may resort to inappropriate behaviors, such as suddenly grabbing someone’s arm to get that person's attention. Instead, we needed to teach him socially appropriate ways to interact, especially since his stature at six feet tall could make him appear threatening to those who don’t know him. Not only does he read the story aloud repeatedly, but Alex also practices the skills detailed in the story so that he knows how to act when he is around other people. Specifically, the social story tells him that he can wave, raise his hand, shake hands, give a high five, or say, “Hi” or “Excuse me.” After repeating this exercise many times, Alex has made great progress, as we have seen him do what he has been taught, tapping my shoulder when we are in the car, raising his hand during a meeting with his team of support staff, and offering a high five to his therapists when they come to see him.

Last evening, as we were shopping at the grocery store for Thanksgiving dinner items, Alex put these skills to good use and was rewarded for his efforts. After collecting our list of groceries, we headed for the self-check line and were greeted warmly by the store clerk who was supervising the self-check registers. Apparently, Alex was impressed with her friendliness because he suddenly left our cart of groceries that he had pushed through the store, walked over to her, smiled, and tapped her gently on the shoulder, just as he had been taught in the social story he knows by heart. However, he didn’t know what to say to her once he had her attention, so he just smiled.

Even though he had done nothing wrong, Ed and I immediately sprang into action, not knowing how she might react to his gesture and not wanting him to bother her. Ed apologized and led Alex back to the grocery cart, and I noticed that the clerk had followed them. I asked Alex, “Did you want to shake her hand?” He lifted his left hand (as he always does, offering the wrong hand for a handshake), but she took his right hand in hers, giving him a nice handshake, which made him smile and seemed to please her.

Then Ed, still trying to smooth over a situation that could have been awkward, told Alex that the next time, he could just say hello instead. The kind woman then put her arm around Alex’s shoulder and said sweetly to him as though they were old friends, “That’s okay, anytime you see me, you can tap my arm. You are so precious.” What could have been an uncomfortable incident became a pleasant one because she reacted very kindly, understanding that Alex intended no harm; he just wanted to interact with her.

Before we left, I thanked her for being so kind to Alex, but she assured us that it was her pleasure, wished us a Happy Thanksgiving, and made a special point to say goodbye to Alex, who was still smiling. As we took the groceries to the car, I felt teary that a stranger could be so kind to my son and make him so happy. Although I suspect she recognized that Alex has autism, she responded with warmth and kindness instead of discomfort and avoidance. I hope that she was as blessed by this brief encounter as we were.

As we celebrate Thanksgiving this week, I’m thankful for the many blessings in our life:  our faith, family, and friends that sustain and bless us, the healing we have seen in Alex, and for the kindness of strangers who take the time to interact with Alex. To the pretty lady at the grocery store with the warm smile and kind heart, thank you for making Alex’s day. You should know that Alex has an innate sense for people who are especially nice, and he is drawn to them. You must be one of those people because he felt the need to reach out to you and get your attention. By responding to him with genuine affection, you have gained a new friend. That night after you called him “Precious” and told him that he could tap you on the shoulder whenever he saw you, he asked what your name was. Overwhelmed by my fear of your reaction to him as well as by your sweetness to him, I didn’t think to ask your name. However, we hope to see you again, and you should know that a young man with autism now includes you in his prayers as his “new friend” whom he wants God to bless. Indeed, I pray that you will be blessed for the kindness you have shown. While you dismissed it as “no problem,” to us it meant a great deal, and we are thankful.

“…And if you have a gift for showing kindness to others, do it gladly.” Romans 12:8