Sunday, August 17, 2014

Allies

 
This week, I began another school year, which meant that I once again entrusted Ed to take over solo parenting of Alex while I was at work. As I have mentioned previously, we have been blessed that our work schedules have always allowed at least one of us to be home to take care of Alex his entire life. In the summer, both of us are fortunate enough to be home from our teaching jobs. However, when we return to work in August, Alex must adapt to a new schedule in which I’m gone in the mornings, and his dad is at work in the afternoons.

Wanting this transition to go smoothly, every year I give Ed a crash course in reminding him of Alex’s routines and making sure he knows where everything is that Alex may need while I’m at work. Although he probably already knows the information I rattle off at him, he humors me by feigning interest and expressing gratitude for my concern. Thankfully, Alex adjusted well to my being gone this week, and my careful instructions proved unnecessary. In fact, I suspect that Alex and Ed use the time while I’m at work wisely, planning together ways to make a monkey out of me.

For instance, last night Ed offered to take my car and fill it with gas, a very thoughtful gesture. He even offered to take Alex along with him, which was nice. However, I wound up getting involved in the process that was supposed to relieve me of duty. Specifically, Ed told Alex that if he’d get his shoes and put them on, he’d take him to the gas station. While this seems innocent, I’m sure that the two of them plotted this whole sequence of events while I was at work this week.

Ed: “So, Alex, I’ll offer to take you to the gas station with me and tell you to go get your shoes. You just sit there, and I’ll stand there waiting for you to get them, knowing that you won’t.  I won’t go get them, either, pretending I’m waiting for you. Your mom will be happy that I’m taking her car to get gas, so she’ll just go get your shoes for you and help you put them on.” Both Ed and Alex laugh.
 
In a similar scenario, I picture Ed and Alex discussing how they’ll get me to find other things for them. I imagine it sounds something like this. Ed: “Alex, if you are trying to find something like your watch or your almanac or your minute timer, come tell me. I’ll repeat loudly whatever it is you’re looking for so that your mom, who’s in the other room, knows we’re blindly trying to find something.” Both laugh. “We’ll look half-heartedly, and then I’ll start saying loudly, ‘Alex, WHERE did you put it?’ Don’t answer me when I ask that. If your mom doesn’t come running, then I’ll start complaining about how you need to put your things where they belong. This will make your mom think we’re really frustrated, so she’ll look for your lost belonging. We’ll start timing her and wait for her to find it in no time and to tell us that if it had been a snake, it would have bitten us.” Both laugh hysterically.

Besides finding things for Alex, I also spend quite a bit of time as his personal waitress. Although Ed sometimes must fix Alex food and drinks, when I’m home, he usually relies upon me to serve him. I think this arrangement occurs because of the following likely conversation between my guys when I’m at work. Ed: “Now, Alex, when you want something to eat or drink, you can come ask me instead of your mom. However, I’ll act like I don’t hear you the first ten times you ask. I’ll keep staring at the television or computer screen all the while you’re asking me. I won’t completely ignore you, though, because I’ll keep asking you what you want. If your mom doesn’t hear your request, I’ll keep repeating it louder and louder like this, ‘Lemonade? You want lemonade? I’m not sure if we have lemonade.’ If that doesn’t bring her running, I’ll say, ‘Go ask Mommy if it’s okay for you to have lemonade this early/late/often.’ Then she’ll probably fix you whatever you ask her or maybe offer you something better to eat or drink. I’ll just sit here and watch.” Both laugh and high five each other.
 
All kidding aside, I’m thankful that Ed really does take such good care of Alex when I’m at work and even more grateful that the two of them have such a close, loving relationship. I don’t have to worry while I’m at work because I know that they are content together. Although, I must admit, I’d love to hear some of the conversations between the two of them when I’m not home and they’re trying to find Alex’s shoes or his watch or lemonade. I’m betting they manage a lot better when they’re alone than I would think. At least I hope so.

“The one who plants and the one who waters work together with the same purpose. And both will be rewarded for their own hard work.” I Corinthians 3:8

Sunday, August 10, 2014

The Summer of Alex

 
“Don’t cry because it’s over. Smile because it happened.” Dr. Seuss

As I return to my teaching job this week, I feel anticipation about starting a new school year and a wistfulness that summer must come to an end. While I always feel a sense of sadness that the freedom of summer must be replaced with the responsibilities of real life, I find it harder to say goodbye to this one, for it has been the best summer of Alex’s life. Thinking back to the terrible struggles we endured two years ago with his anxiety and aggression that led to weeks of hospitalization, we find ourselves amazed that we have come this far in a relatively short time. Even last summer, which brought improvements, still found us constantly monitoring Alex’s movements, fearful that he might slip back to a place where we found him nearly unreachable. Certainly, he was better, but he was also hazy, fogged by the medications needed to keep him calm. However, with time, prayer, and healing, Alex has emerged, better than ever and ready to enjoy life again. Praise God.

This summer, we have taken him to several concerts in our downtown park, where he has enjoyed listening to all types of music, from classical to 1950’s oldies to 1980’s pop to Celtic to his proclaimed favorite, jazz. Munching on a snack, he bobbed his head to the beat of the music and clearly expressed his joy, smiling broadly. Going shopping, he not only pushed the cart, but he also made comments about the things he noticed and made requests about things he wanted to buy. When we went to restaurants, he savored his food, enjoyed watching other people, and never seemed to be in a hurry, sitting calmly and happily. In walks through parks and along pathways, he kept us moving at a rapid pace, as he eagerly took big strides in his enthusiasm to get where he was going. In fact, his walking pattern seems symbolic of his new outlook on life: moving forward rapidly because something better is ahead.

Aside from the satisfaction of knowing that Alex is content, probably the biggest difference of this summer has been that we trust him again. After his unpredictable behaviors of the past made us cautious of making him upset or leaving him alone for any length of time without constantly monitoring what he was doing, we now know that he isn’t likely to do anything wrong. When he’s not doing something with us, he’s reading or watching television or using his iPad or listening to music—all typical activities for a young man his age. As our trust in him has grown, we have also become less fearful that he would return to destructive behaviors, such as throwing things in anger. This summer, breakable objects that were hidden in safe places have returned to their proper homes. All of the fragile glass and sentimental old family keepsakes have reappeared in my dining room hutch, no longer boxed away in bubble wrap in the basement. Remote controls have returned to the open instead of being hidden away, as have electronic devices. Now when we hear noises, we ask, “Alex, are you okay?” instead of “Stop, Alex! What are you doing?” Not having to live in constant fear of his meltdowns has truly been a blessing.

With the significant behavioral improvements, Alex has also made great progress in his language skills. Working with his therapists and us, he seems to have gained more confidence in his ability to speak. As he asks questions and makes comments on his observations, we realize how much better his language has become in the past year. Moreover, he’s speaking up more and mumbling less. Through the things he says and through questions he asks and answers, we know that his mind is sharp again, something we feared had somehow been lost during the turbulent times. His keen memory is indeed intact, as his ironic sense of humor. What may have been dulled thankfully now shines again.

Best of all, Alex has shown great improvements in his social skills. When he’s out in public, even in crowded places, he remains calm and behaves appropriately. He has learned to refrain from making inappropriate remarks and fully cooperates with us when we take him places. Because he has become so trustworthy, Ed and I no longer feel the need to troubleshoot constantly, looking for potential problems, and we can relax and enjoy our outings as much as Alex does. Last week, when Ed’s sister, brother-in-law, and niece came to visit us, Alex interacted with them nicely and enjoyed spending every minute with them instead of wandering off to his room to be alone. As I watched him help his cousin collect stones from the beach of Lake Michigan, I felt a sense of peace knowing for certain, he’s going to be all right.

While I have hoped and prayed and struggled to have faith that everything will be all right, this summer has brought the reassurance that Alex IS going to be all right. If he can improve as much as he has the past two years, he can continue to make great strides. Just as he walks with great purpose and enthusiasm, his life holds that same purpose and enthusiasm. As Ed and I return to teaching our students for another year, we remember that our prize pupil Alex still has much to learn and much to teach us about life. While we will miss the lazy summer days of fun, we move forward with anticipation, knowing that even better days lie in store for us as Alex continues to surprise us with what he can do and shows us how the simple joys in life often bring the greatest contentment.

“Come see what our God has done, what awesome miracles he performs for people!” Psalm 66:5

Sunday, August 3, 2014

Autism and Hypothyroidism

 
While autism is primarily associated with difficulties in communication and social skills, certain medical issues may also be connected with this condition. For example, children with autism may have food allergies or sensitivities to glutens and/or milk products, as Alex does. Recently, I discovered another condition that can be associated with autism is hypothyroidism, which occurs when not enough thyroid hormones are produced in the body. Common symptoms of hypothyroidism include fatigue, weight gain, dry skin and fingernails, depression, and increased sensitivity to temperature changes. Fortunately, hypothyroidism can easily be treated by taking prescription medication, thyroid hormone medicine to replace what the body cannot produce, typically for the rest of the patient’s life. However, careful monitoring through observation of symptoms and blood tests are necessary to ensure correct levels of medication are treating the condition.

When I was thirty-five years old, I became aware of hypothyroidism’s effects when I was diagnosed with tumors in my thyroid. Because biopsies were inconclusive, most of my thyroid was removed surgically; thankfully, those tumors turned out to be benign. However, since my thyroid could not produce the levels of hormones my body needed to function properly, I have been on thyroid medication since then. Over the years, I have been on various dosages of the generic medications levoxyl and levothyroxine to compensate for the thyroid hormones my body lacks. Other than taking a small pill every morning when I awaken and monitoring my thyroid levels through blood tests once or twice a year, hypothyroidism has typically not been a problem for me.

Two years ago, we discovered that Alex also has hypothyroidism when routine blood tests to check how his medications affect his metabolism indicated that his thyroid hormone levels were lower than normal. The doctor indicated that the lithium he takes to regulate his moods can sometimes be a factor in causing disruption of thyroid hormone levels. In addition, hypothyroidism tends to run in families. Since my brother and I both have hypothyroidism, Alex could have very well inherited that tendency. After Alex was diagnosed with the low thyroid levels, the doctor prescribed a low dose of levothyroxine to be taken once daily in the morning. In addition, his thyroid levels would continue to be monitored on a regular basis through blood tests.

After Alex was diagnosed with hypothyroidism, I realized that he had shown many of the same symptoms I had displayed with the condition: dry skin, oversensitivity to cold, and a typically below normal body temperature. Nonetheless, like me, he has also responded well to taking thyroid medicine and seems unfazed by his sluggish thyroid. A few weeks ago during a routine exam, his primary care physician noted that Alex’s most recent blood tests indicated that his thyroid hormone levels were too low, indicating that his medication needed to be changed to address his underactive thyroid. As his doctor noted, Alex can’t easily verbalize his symptoms, so we must rely upon his lab tests and careful observation to see if his hypothyroidism is causing problems. His main concern was that if Alex’s thyroid levels continued to be too low, this could not only cause physical problems, but could also cause cognitive impairment. Consequently, he decided to add Nature Throid, a natural hormone supplement, to Alex’s current dose of levothyroxine to help his metabolism and address any symptoms of hypothyroidism.

In doing some research about the connection between autism and hypothyroidism, I ran across a fascinating article by internist Raphael Kellman, M.D. entitled “The Thyroid-Autism Connection: The Role of Endocrine Disruptors.” [To read this article, please click here.] Dr. Kellman explains that autism and hypothyroidism are connected, noting the effects of environmental toxins on both conditions. Additionally, he states, “Because children with autism are stressed emotionally and physiologically and are in an inflammatory state, they are likely to have low cellular thyroid hormone levels (that is, an underactive thyroid). However, because their blood tests may be normal, their low cellular TH [thyroid hormone] levels are frequently overlooked.” He goes on to state that he has discovered approximately seventy percent of children with autism have hypothyroidism. Moreover, he has found that treating children who have autism and hypothyroidism with thyroid hormones helps improve their language, cognition, hyperactivity, motor skills, social skills, and gastrointestinal issues. His experience has been that many make significant improvement, and some make complete recovery by treatment with proper levels of thyroid hormone medication.

After reading this research, I wondered how many children with autism suffer from symptoms of undiagnosed hypothyroidism. I know from my own experience that when my thyroid hormone levels are off, I can feel sluggish, dizzy, ill, or terribly anxious and jittery. Fortunately, I have the language skills to explain to my doctor that I suspect my thyroid hormone levels need to be checked and perhaps my medication needs to be adjusted. Children with autism probably do not know why they are not feeling well and may express the symptoms through negative behaviors instead of language. Thankfully, Alex’s doctor not only monitors his metabolism, recognizing the significant impact his thyroid hormone levels can have on his physical and mental well-being, but he also immediately addresses the condition through appropriate medication and supplements.

Although Alex has only been on the new Nature Throid supplement for a week and a half, we have already begun to see positive effects. He seems more mentally alert and quicker witted, and he has also been less fatigued. More importantly, he seems even happier and more content than he usually is. Although these improvements could be coincidental, I believe that they are signs of healing that will continue to get better with time. Since we have been blessed with these positive changes, I would encourage other parents of children with autism to find doctors willing to pursue the possibility that hypothyroidism may be the cause of symptoms often attributed to autism. If taking a small inexpensive pill every day can significantly improve how that child feels, certainly the benefits are clear. I hope and pray that Alex continues to respond to the hypothyroidism treatment and that others may also find similar positive outcomes, as well.

“There the child grew up healthy and strong. He was filled with wisdom, and God’s favor was on him.” Luke 2:40

Sunday, July 27, 2014

Sharing

 
Of the various characteristics commonly associated with autism, difficulty with social interaction often tops the list. More specifically, people with autism are noted as being unaware of and/or disinterested in what is going on around them, and they are described as generally not sharing their observations or experiences with others. This lack of social interaction is frequently described as aloofness. Although this isolation from others could be a choice, I suspect that sensory overload, along with limited communication skills, may be why some people with autism withdraw from others. With Alex, we have seen that as his sensory issues have been addressed through sensory integration therapy and as his language skills have improved with therapy and time, he has become much more interactive, especially lately.

When Alex was little, he seemed to lack the ability to point to things, which is common in children with autism. He would sometimes place his entire hand on something to call attention to it, but most of the time, he would take us by the hand to show us what he wanted us to see. As he grew older, he developed the ability to point and direct our attention, but until recently he rarely did so. This summer, we have noticed that he points to things as he tells us something he has observed. Most often, as we’re driving in the car, he points to signs at gas stations and happily announces, “Gas prices are going down!” Sometimes this ability to point can be tricky, as he also now likes to point to elderly people and comment, “He’s an old man!” or “She’s an old lady!” Fortunately, he doesn’t talk loudly enough that anyone but us could hear him. Moreover, he actually intends his seemingly rude comment as a compliment because he finds older people interesting. While we’re pleased that he is observing and making conversation, we also have to teach him social skills: pointing at people and commenting on their age is not acceptable.

Along with teaching Alex not to comment on people’s age, we also need to work on having him be less abrupt when he notices mistakes. Because he is very aware of what is going on around him, he notices small details that others may overlook. If a sign is misspelled, he will see it immediately and comment. He is even more likely to note numerical errors, especially on clocks or calendars, which are very important to him. I suspect that he thinks he’s being helpful to comment so that the problem can be addressed. Recently, he was looking at my watch and indignantly told me that the date was wrong. Since I rarely pay attention to the calendar on my watch, I didn’t realize that it had been off since July started and didn’t really care. Alex seemed surprised by my indifference and immediately asked me when I was going to fix it. Of course, to ease his concerns, I fixed it right then, which satisfied him. Similarly, this week, when we took him to the doctor, he noticed that the date was wrong on the electronic blood pressure cuff. The nurse, who finds Alex amusing, laughed when he told her his observation, explained that she had just put new batteries in the gauge, and promised him she’d take care of it for him. Fortunately, she understands his need for accuracy and didn’t take personally his need to comment on the error he had observed.

Perhaps the greatest improvement we have seen this summer in Alex’s interactive skills is in his desire to share information, opinions, and his emotions. In the past, he often spent countless hours reading and researching online and rarely commented on what he had discovered. Occasionally, he would share trivia he’d learned if a particular topic arose. For example, if he heard something about the Pope, he might comment that the Pope lives in Vatican City, the smallest country in the world. Frequently, if he hears a particular date mentioned, he’ll enthusiastically tell us what gas prices were at that time or how the stock market was doing then. Lately, he’ll be reading a reference book or something online and come running to tell us what he’s just read, wanting to share what he’s learned. Similarly, if he sees something on television that catches his interest, he’ll point to it and make an appropriate comment. If we’re in another room, he’ll come galloping (literally) to tell us what he has just seen so that we can experience it with him. What has been most heartwarming to watch, however, has been the development of his ability to express his emotions freely. When he hears songs that he likes on the radio, CD player, or television, he excitedly informs us, “That’s my favorite song!” Interestingly, we’ve discovered that Alex has many favorite songs, but we still love seeing his face light up as he smiles and enthusiastically lets us know how much he likes the music, a familiar tune that makes him happy.

While sharing ideas and emotions may not always come easily for Alex, we are thankful that he is making progress in his ability to communicate what he is thinking and feeling. Not only is this development crucial for his social skills in general, but also we get a better sense of how his clever mind works. Moreover, seeing Alex freely express himself, especially when we can share that joy with him, is a blessing we treasure and a testimony to God’s work in helping him overcome the obstacles of autism.

“’It was not because of his sins or his parents’ sins,’ Jesus answered. ‘This happened so the power of God could be seen in him.’” John 9:3

Sunday, July 20, 2014

Swimming

 
Alex has a healthy fear of water, which is actually a good thing. For some unknown reason, many people with autism who wander away from places of safety often gravitate toward water—ponds, lakes, rivers, and swimming pools—where they can drown if not found in time. [For more information on this issue, please click here for my previous blog entry “Autism and Wandering: A Safety Crisis.”] Despite taking swimming classes in high school, neither Ed nor I can swim well, and we know our limitations in water. Specifically, I would never try to swim in water over my head or would always wear a life jacket on a boat because I don’t trust my ability to swim to safety. I’m sure that I have conveyed this sense of being overly cautious around water to Alex, and he recognizes the potential dangers of deep waters to a non-swimmer.

When he was younger, his sensory issues made him overly sensitive to putting his face in water, and he didn’t like getting water in his eyes. Even though he has always loved baths, he was careful not to splash water in his face, and I had to be careful not to get water in his eyes when I washed his hair. Since water in his face seemed to upset him terribly, I delayed putting him in swimming lessons until he was a little older, and I knew that his special needs would require understanding of his sensory issues and delayed motor skills.

At the age of nine, Alex took swimming lessons through our local YMCA that were supposed to be geared for children with special needs. Although the instructors were kind to him, they were teenagers who really had no idea of how to teach special needs children how to swim. In fact, they seemed more interested in visiting with each other than in actually teaching the kids. Consequently, I worked with Alex myself, teaching him the limited skills I know about swimming, which meant he didn’t learn much that summer. Nonetheless, he enjoyed being in the water, yet still maintained a cautious awareness about not getting in deep water. Like Ed and me, he knows his limitations and keeps himself safe by not getting in over his head, literally.

A few weeks ago, an autism mom friend had shared that the local YMCA offers open swimming time for people of all ages with special needs for a very reasonable fee. Moreover, they offer this session before the facility’s opening hours so that the families have more privacy in the locker rooms and the pool. Because our kids’ behavior can be unusual at times, we don’t have to worry what other people think. Since this seemed to be an ideal situation (added to the convenient location of the Y, which is less than five minutes from our home), I asked Alex if this was something he thought he would like to try. He acted enthusiastic about going swimming and asked me several times about going to the pool the week ahead of the first session. However, I was still unsure how he’d react once we actually went the first time.

Last Sunday was the first session for special needs swimming, and he eagerly anticipated going. One of his concerns was whether they would have clocks because he couldn’t wear his watch; keeping track of time is very important to him. This fear was eased immediately when he saw that they had not one clock but four—one on every wall. I was pleased to see that the pool designated for this activity was not very deep and offered a gradual step down into the water. Also, the water was comfortably warm, which is important to Alex and me because we get cold easily. When we first got there, Alex seemed to have some trepidation about getting in the water, which really didn’t surprise me. He gradually stepped into the water, but didn’t seem to want to get much deeper than his knees as he held on tightly to the railing with one hand and my hand with the other. Knowing that Alex must always do things on his own terms, I just waited until he was ready to move forward. He kept asking me about how deep the water was, and I reassured him by pointing out the markings on the pool walls and by showing him that the water was only up to my waist in the middle part of the pool.

After a while, he decided to venture away from the safety of the very shallow water and railing, and he was willing to walk into the waist-deep water, clutching my hand for security. With time, he even played catch with a ball, which meant that he had to let go of my hand and trust himself in the water. By the end of the session, he had walked back and forth across the pool several times, each time seeming more comfortable and confident in the water. However, I knew that the first session had truly been a success when he asked me if we could come back again the following week. Sometimes things work out even better than we plan.

Even though I hope that Alex someday may learn to swim so that he can be safe in the water, I’m pleased that he knows his limitations and shows good sense about not getting in deep water. Moreover, I’m also glad that he’s willing to try new things, to attempt to overcome his fears and sensory issues, and to learn that these new experiences can bring him enjoyment.

“…and it was a river that I could not cross; for the water was too deep, water in which one must swim, a river that could not be crossed.” Ezekiel 47:5

Sunday, July 13, 2014

Improvement


As our summer is coming to its halfway point, I realize that signs of Alex’s progress are everywhere, especially compared to the past three summers, where his behavior was unpredictable, making him untrustworthy.  In the evenings after Alex has gone to bed, Ed and I regularly compare notes about how things have gone that day; this is something we have done for years. Frequently, we have discussed Alex’s problematic or concerning behaviors and brainstormed possible causes and ways to handle these issues. Lately, however, we marvel at how well he is doing. As Ed commented last night after the three of us had enjoyed a pleasant dinner at a restaurant, we never take these good times for granted because we know how precious they are.

One of the nicest surprises this summer has been the emergence of what we have dubbed “Nighttime Alex.” For the past few years, Alex has often been too tired in the evenings to enjoy activities and preferred to go to bed early. Frankly, we were relieved that he wanted to go to bed early because his behavior was tiresome for us, and we all needed a break from each other. Now, Alex seems to be at his best in the evenings, and we have been thankful that we can now do fun outings together like typical families.

This summer, we have been able to attend several free concerts outdoors at our local downtown park. Not only does Alex have the energy to stay awake, but he also has the energy to bob to the music, clap his hands, and enthusiastically push the cart we use to transport our folding chairs. With his eclectic tastes in music, he has enjoyed listening to music from the 1950’s and 60’s, jazz, rock and roll, and even Celtic music, and he’s looking forward to the upcoming band concerts. To satisfy his concern of “Will there be food?” I always pack something to eat and drink, which makes his evening complete. Besides the music and snacks, he likes to watch other people, and he finds little kids especially entertaining. He always behaves himself at these concerts, doesn’t seem bothered by the noise and crowds, and sits calmly and patiently the entire time, never asking when we are leaving. Not only does he relax and enjoy the show, but Ed and I can also relax and enjoy the show, knowing that he’s content.

Another outing we have savored this summer is going to restaurants. Although we have gradually been getting Alex used to dining out, he has made improvements recently that make going to restaurants more pleasant. First, he is more trustworthy than he used to be, so we don’t constantly worry that he’s going to grab things or say things to get attention. Also, he has become much more patient about having to wait, so he doesn’t get agitated while his food is being prepared. He additionally maintains that calm demeanor when plans have to change suddenly. For example, if a restaurant is too crowded and we decide to go elsewhere, he readily accepts that change, or if an event is rained out, he’s willing to do something different. This spontaneity makes life so much easier for us because things don’t always go as planned. Finally, a major change for Alex is that he is starting to order from the menu himself instead of relying on me to order for him. Thanks to the coaching from his therapist, he has learned the skills and confidence he needs to be more independent, and he seems to feel proud that he can tell the waitress what he wants.

This week we saw evidence of his increased confidence when we took him to the eye doctor for his annual exam. Because his behavior has improved, Ed and I were less nervous about how he would handle the appointment, and he did very well. Not only was he fully cooperative during all the testing, but he also answered all the questions he was asked without any hesitation. As we were selecting new glasses for him, due to a slight change in his prescription, he noticed the price of the frames and showed concern about the cost, saying, “Oh no, that’s too expensive.” After I assured him that we weren’t worried about the cost because he needed new glasses and told him that insurance would pay part of the expense, he seemed to be relieved. We were pleased with how nicely he interacted with the staff, who seemed to find him quite likeable. In fact, the woman who adjusted his glasses kept commenting on how sweet he was, which made us proud.

Yesterday morning, we took him to the monthly Saturday social activity offered by one of the agencies that provide services for him. Alex looks forward to these events every month, and he was especially excited that the planned activity was watching the Disney movie Frozen. Even though he has seen this movie before, he still eagerly anticipated going. Once again, he patiently waited, acted pleasant, and sat nicely the entire time. Instead of constantly worrying about how he was going to behave, Ed and I were able to relax and enjoy the movie with him.

As we have seen progress in Alex this summer, we are grateful that we can do typical family outings because he can behave himself. While we are pleased that he has learned to act appropriately in public and even be quite pleasant, we are even more pleased that he can engage in activities that make him so happy. Although it seemed to take a long time for him to master many of these skills, we are thankful for the improvements that make our lives better and happier and know what a blessing this progress truly is.

“I know all the things you do. I have seen your love, your faith, your service, and your patient endurance. And I can see your constant improvement in all these things.” Revelation 2:19

Sunday, July 6, 2014

Special Requests

 
Last night, Alex, Ed and I were watching reruns of the television comedy series The Big Bang Theory, which is one of Alex’s favorite shows. One of the main characters, Sheldon, reminds us of Alex in some ways because, like Sheldon, he is funny and smart, but he also has difficulty with social skills and can be demanding at times. In the episode we were watching, Sheldon had a cold and was insisting that his friend Penny put Vicks VapoRub on his chest while she sang “Soft Kitty.” Although this scene was meant to be ridiculous and funny, I have played the role of Penny to Alex’s Sheldon, fulfilling his requests that things be done his way. In fact, sometimes I feel as though I’m a participant in a strange game show where Alex plays the host and expects me to follow his lead.

For example, Alex takes various pills four times a day, and I usually administer those pills at least three of the four times daily. Although Alex is very good about taking his pills, he insists that I must tell him the correct name for each one. Fortunately, I not only know the names of all his medications and supplements, but I also can recognize them by shape, size, and color, which makes reciting the names no problem for me. (Alex doesn’t know this, but I have also memorized the brand names and the generic names of all his medications. I dare not let him know, or he’ll want me to rattle off both names instead of just one.) When I’m at work, Ed gives him the morning doses of his medications, and Alex asks him to name the pills, too. However, Ed manages to escape that task by telling Alex that he counts the pills instead of identifying them and reminds him that only Mommy names them. Apparently, Alex is satisfied with that explanation, and Ed doesn’t have to learn which pills are which. I, on the other hand, must continue to play amateur pharmacist because Alex knows that I can name those pills. I’m never certain whether he is really interested in what he’s taking or if he’s trying to catch me making a mistake. Whatever his reasoning, I indulge his curiosity and show off my knowledge of which pill is which.

Another recent routine Alex has developed for us is vitals night. Every Saturday evening, Alex insists that we use our home electronic blood pressure cuff to measure the blood pressure and pulse for each of the three of us. Besides taking these vital statistics, he also wants me to write down our results so that he can compare the data. This weekly process has become somewhat competitive to see who has the lowest blood pressure and pulse. Although Alex, who certainly has the age advantage, usually wins this “competition,” last night, I had the lowest pulse, and last week I swept the challenge with the lowest blood pressure and pulse. Considering all the dancing I do to Alex’s tune, I’m amazed that my vitals don’t seem to reflect the stress I feel at times. Perhaps running around to meet his demands keeps me in good physical shape. Probably this weekly event is a good way to keep an eye on our health, and I’m proud of myself for not bowing to Alex’s request that we do this process every day, telling him that once a week was certainly often enough. Evidently, I was convincing because he didn’t question my resolve on that issue.

Aside from the health-related routines regarding medications and vitals, Alex also insists that we provide him with receipts from any purchases we make. Originally this started with letting him see our credit card receipts when we bought gasoline for the cars. We knew that he liked to follow gas price trends, and these receipts allowed him to monitor whether gas prices were going up or down. Lately, however, he wants to see all our receipts, such as those from grocery store or restaurants. I’m not sure whether he’s keeping mental notes about how much we spend or whether he’s just nosy about what we bought and where we bought it. We’ve learned simply to hand him our receipts the minute we walk in the door from shopping or errands so that he can study our purchase history, which seems to make him happy.

To be fair, he gets his need to retain receipts honestly from me. I always keep my receipts because I figure I’ll need them some time. (My friends who know the following story seem to find it amusing yet reflective of my OCD tendencies organizational skills.) When I was a sophomore in high school, I was called down to the principal’s office—the only time I was ever sent to the office when I was in school because I followed rules to the letter. On my way there, I tried to think of other students’ misbehavior I might have witnessed because I was certain I hadn’t done anything wrong. When I arrived, the principal told me that my homeroom teacher turned in my name because I hadn’t paid my book rental. I breathed a big sigh of relief and told him, “No, Sir, I did pay. In fact, I have my receipt right here.” As I pulled out my receipt to prove my innocence, he seemed bemused that I actually had the receipt handy, apologized to me, and told me I was pretty clever to be able to prove easily that I’d paid the book rental. Maybe Alex, like me, knows the value of keeping receipts. Somehow, I suspect that he just enjoys looking at the list of items and the prices and that he likes to make us jump through hoops. Luckily, I can rise to his challenges and play “Name That Pill” and “Provide That Receipt” with the best of them. Oh, and I can meet his demands all the while keeping my blood pressure low. However, he’d better not ask me to sing “Soft Kitty”; now that would be asking too much.

“At that time you won’t need to ask Me for anything. I tell you the truth, you will ask the Father directly, and He will grant your request because you use My name.” John 16:23

Sunday, June 29, 2014

Chex, Cookies, and Caroline's Carts

 
Recently Alex saw a commercial for Chex cereal snack mix and asked me if we could buy some. Because, like many children with autism, he has been on a strict gluten-free and casein (milk)-free diet since he was seven years old, he knows that he can only eat foods that do not contain these proteins to which he is sensitive. Even though he cannot eat the prepared Chex snack mix, I knew that we could find a recipe and easily adapt it to fit within the guidelines of his restricted diet. Starting with the original Chex snack mix recipe from 1952 that I found online, I made a few changes and came up with a tasty result that Alex really liked.

Here is the recipe I adapted to make gluten-free, dairy (casein)-free Chex snack mix. Melt ½ cup of Fleischmann’s unsalted margarine. Add 1 tablespoon French’s Worcestershire sauce and mix. Combine 2 cups of Chex rice cereal, 2 cups of Chex corn cereal, and 1 cup Snyder’s of Hanover gluten-free, dairy-free, casein-free, egg-free pretzel sticks in a baking pan and pour the margarine/Worcestershire sauce mix over the cereal and stir. Sprinkle ¼ teaspoon of table salt and ¼ teaspoon McCormick garlic salt over the cereal. Bake in a 300 degree oven for 30 minutes, stirring every ten minutes. Cool and store in an airtight container.

When we first discovered that Alex was sensitive to glutens and caseins, I remember being overwhelmed by trying to figure out what he could and couldn’t eat. At that time, gluten-free diets were less common, and I relied upon online resources and special diet cookbooks to make Alex foods he could eat. Fortunately, gluten-free and dairy-free foods have increased in quantity and quality over the years. What used to be available only in health food stores is now readily available in many grocery stores. Items I used to have to bake from scratch, such as cookies, are now offered in a nice variety of flavors and textures. Moreover, the taste and textures of gluten-free and dairy-free foods has improved significantly over the years. Previously these foods often resembled their cardboard containers in flavor and texture, but now these foods mirror their non-special diet counterparts and are quite tasty.

One of the best discoveries we have made recently is the array of products from Enjoy Life. This company makes cookies, cereals, and baking goods in a dedicated facility, which means that no allergens are present to cross-contaminate their foods. Showing their concern for a variety of food allergies, their foods are free of eight common allergens—wheat, dairy, peanuts, tree nuts, egg, soy, fish, and shellfish. In addition, their products contain NO casein, potato, sesame, sulfites, artificial ingredients, or GMO’s. Although I was a little skeptical how tasty their products might be, we discovered that they are delicious. In their crunchy cookie line, Alex is a fan of their vanilla honey grahams and their sugar crisps. (They also make crunchy chocolate chip cookies and double chocolate cookies, but we keep Alex away from chocolate, which seems to make him hyper.) Besides their crunchy cookies, Enjoy Life also makes soft-baked cookies, including chocolate chip, double chocolate brownies, gingerbread spice, and Alex’s favorite chewy cookie, snickerdoodles. While we have been able to find these cookies at our local Strack and Van Til grocery stores, these products are also available online directly from Enjoy Life or other retailers. In addition, their website (http://www.enjoylifefoods.com) offers a store locator where their products can be purchased; their helpful website also provides more information about their products along with recipes. I’m pleased to have found a company that caters to people with food allergies and makes delicious cookies Alex can eat, which has made life better for us.

We are also fortunate that the chain of Strack and Van Til grocery stores in Northwest Indiana support people with food allergies, offering a wide variety of foods for people on special diet plans. In addition, we have been able to attend two of their special foods tasting events, where Alex was able to sample various gluten-free and dairy-free foods to decide whether or not he liked them. In fact, this was how we discovered Enjoy Life cookies. Another way that the Strack and Van Til stores have shown their concern for their special customers is to provide Caroline’s carts in all of their stores. These grocery carts allow parents of special needs children to shop more easily because their special design permits even older children to ride securely facing their parents without their parents having to lift them as they would with a regular cart. After lifting Alex for many years into a grocery cart for his safety, I clearly see the value of Caroline carts for special needs children. Once when Alex was beyond the age typical children ride in the grocery cart seat, an elderly man watched me heft Alex up into the cart and commented, “Honey, you shouldn’t be lifting him into the cart; he should be lifting you!” Fortunately, Alex no longer needs to ride in the grocery cart, but I would have loved a Caroline’s cart when he was younger.

Designed by Drew Ann Long, these carts (as depicted above) were named after her special needs daughter Caroline and developed to keep special needs children safe while their parents shop. The best part of these carts is that parents can easily maneuver children into the cart seats without having to lift them as much as they would with typical grocery carts. Produced by the company Technibilt, Caroline’s carts are now available in stores in more than forty states in the U.S., including large supermarket chains such as Kroger, Publix, Winco, Albertson’s, Shop Rite, and Whole Foods. In addition, these carts are also available at the commissaries of many U.S. military bases. To find stores that offer Caroline’s carts, the Caroline’s Cart website (http://www.carolinescart.com) includes an interactive map to show availability of the carts and provides more information about these helpful inventions. I’m pleased that Caroline carts are now available so that parents of special needs children can more easily and safely place their children in grocery carts.

While parenting a special needs child presents certain challenges that typical parents may not realize, the availability of new products makes life easier and better for special needs children and their families. Moreover, companies who offer these products readily inspire a loyalty and gratitude from the customers whom they help. I’m thankful that our local grocery chain, Strack and Van Til, not only offers Caroline’s carts for special needs children but also offers a wide assortment of foods for people with special diets. While these gestures may seem small, to special needs parents, they mean a great deal.

“Taste and see that the Lord is good. Oh, the joys of those who take refuge in Him!” Psalm 34:8

Sunday, June 22, 2014

Bedtime Routine



This week, I was reading an online article about backstage riders, or contractual demands musicians make regarding what must be provided in their dressing rooms before they perform. While some claim these specific requests ensure that more important requirements, such as safety issues, are met, most of them seem to cater to the whims of pampered stars who view their wants as needs. Perhaps the most famous example is the rock band Van Halen’s rider demanding a bowl of M&Ms with all the brown candies removed. Singer and American Idol judge Jennifer Lopez insists that her dressing room be decorated completely in white with white furniture, white curtains, and white flowers. Former Beatle Paul McCartney’s contract includes the rather unusual requirements of 24 bars of Ivory soap and 19 (not 20) six-foot-tall leafy plants. Displaying diva behavior, Madonna insists that a new toilet seat be installed in her dressing room bathroom; Barbra Streisand takes this a step further by demanding that rose petals be placed in her dressing room toilet. Like these stars, Alex has his own list of requirements that must be met; however, his “needs” focus on bedtime instead of showtime. If he knew about backstage riders, he would be likely to want his own contract in writing to make sure his list of demands were met so as not to disturb his need for a nightly routine.

When he was little, Alex’s contract would have included the following bedtime requirements:
  • Favorite books and stuffed animals (specifically Barney the purple dinosaur and two teddy bears Mommy made, a.k.a. “friends”) placed strategically in the bed
  • Recitation of specified bedtime story (Goodnight Moon, later to be replaced by Veggie Tales’ book Time for Tom), complete with perfect page turning, appropriate voice modulation, and absolutely no changes of wording
  • Five sippy cups of various colors lined up on the dresser, each containing a different beverage—milk (prior to the milk-free diet), water, orange Hi-C, orange juice, and apple juice
Fortunately, Alex has outgrown those needed items in order to go to sleep. His current contract would instead include the following requests:
  • Digital scale for weighing self nightly, accurate to 1/5 of a pound
  • Digital electronic blood pressure cuff for measuring “vitals” (blood pressure and pulse) on a weekly basis
  • Prescription progesterone cream rubbed into forearms nightly to combat acne on face
  • Burt’s Bees baby oil rubbed into outer ears to combat chronic dry skin
  • “Tuck you in,” requiring two pillows (one under the head and one over the head) and specific blankets, depending upon the season, including NASCAR quilt, Chicago Cubs fleece blanket, blue sheet, white blanket, and “states blanket” (actually a quilt I made for him when he was five that has a map of the United States and the individual states surrounding it on one side)
  • “Scootching”—a second or third attempt at “Tuck you in” when head is not appropriately placed on the pillow
  • Sound effects for “scootching”—emulating the sounds made when game show contestants lose (My version goes “Wah wah wah waaahhhh”; to which Alex responds “Doh doh doh doooohhh.” This always makes both of us laugh.)
  • Recitation of nightly prayers, specifically the “Now I lay me down to sleep” version ending with “God bless” of 34 specific people’s names (If any of these people who are important to Alex are not mentioned, he adds their names to the end and acts slightly annoyed that I forgot to include them. “Amen” must be said in unison.)
  • Goodnight kiss on the cheek or forehead, followed by mutual declarations of affection—“Love you”
  • “See the stars”—turning on one of his two star projectors, the one that accurately displays constellations in white on the ceiling (but requires being turned off once he’s asleep) or the one shaped like a turtle that displays whimsical green depictions of the moon and stars on the walls and ceiling (not scientifically accurate but has an automatic shut-off after an hour, which makes it more convenient)
  • Recitation of nightly ditty—“Good night, sleep tight, don’t let the bedbugs bite!” (I must say the first part but allow Alex to finish the ditty with “the bedbugs bite.”)
  • Close door to permit enough darkness for the star projections to be seen and to signal that it’s time to go to sleep.
While this complicated routine may seem a bit much, Alex and I have perfected the steps after daily repetitions so that we can run through it fairly quickly. If I forget any of the details, he is quick to remind me what still needs to be done, and he is usually patient about any occasional omissions I make. Certainly, like a rock star, he is pampered, probably because of his autism and his only child status. Since I understand his need for routines, I maintain them, and because I have the time to focus only upon him, I cater to his whims, knowing that he will sleep easily through the night once we have met all his requests. To be honest, this bedtime routine is sacred to me, as well, because during this precious time Alex is the most affectionate and content, which makes my tasks in helping him get ready for bed worthwhile. Eventually, he will be independent and not need me, but for now, I savor the sweet bedtime routine, even those times when it seems tedious, pleased to have a child who prays, expresses love, and knows contentment. To share that experience is truly a nightly blessing.

“In peace I will lie down and sleep, for You alone, O Lord, will keep me safe.” Psalm 4:8


Sunday, June 15, 2014

Father and Son

 
An old Jewish proverb states, “God couldn’t be everywhere, so He created mothers.” As an addendum to that saying, I would add that because mothers can’t be everywhere, God created fathers. Like all other moms, and especially those who have children with special needs, my role involves juggling various responsibilities to make sure Alex gets what he needs. However, without Ed’s support, encouragement, and steady presence, I would never be able to manage all those tasks required of me. Just this past week in a variety of situations, I was reminded how well we complement each other as parents, both working toward helping make Alex’s life the best it can be.

On Monday, we took Alex to his psychiatric nurse practitioner for his regular six-month appointment to monitor his health and progress. When we go for medical appointments, my primary responsibility is to act as Alex’s health care advocate, speaking the medical lingo with the professionals, and Ed’s primary role is to keep Alex calm and entertained as we wait. As Ed chatted with Alex about the Beatles, I rattled off the prescription medications he is taking, the dosages, and the times of day he takes them. When we met with his nurse practitioner, I gave a brief summary of his progress and behavior as well as answered her questions. While I try to be objective, Ed takes the opportunity to highlight Alex’s accomplishments, making no secret how proud he is of his son. Of course, both of us were pleased that not only were Alex’s blood tests and vitals excellent, but also that he handled himself well, answering her questions pleasantly and politely.

On Wednesday, I went out to dinner with some friends for a Girls’ Night Out, leaving Alex and Ed to enjoy one of their “Boys’ Suppers.” This means that Ed cooks seafood, which they both love and I despise, and they look forward to these opportunities to eat their favorite food together. When I came home, I found Alex in his favorite spot, stretched out on the loveseat with his long legs hanging over the end, and Ed stretched out on the couch, both of them contentedly watching baseball on television. Knowing that Ed takes good care of Alex and that Alex enjoys time alone with his dad allows me to enjoy some time with my friends and gives me a break from the autism mom routine.

This week, I wondered aloud how much Alex’s therapies were benefitting him, not being critical of his terrific therapists, but just questioning how much of his progress simply comes with time and maturation. Ed immediately listed all the positive aspects of Alex’s therapy, reminding me how valuable those sessions are to Alex. Perhaps one of the greatest strengths of our marriage and partnership as parents is that when one of us is flagging in energy and enthusiasm, the other points out all the good to lift the spirits and encourage moving forward toward our goal of making Alex better.

Yesterday, we took Alex for a Saturday Social monthly event at an agency that provides services for adults with disabilities. A couple of months ago, we had taken him for the first time to this program; that time the activity was crafts, which are not among Alex’s favorite things to do. However, he apparently had a good time because he pestered me to call them to find out what the activity was for this month. When he found out the planned activity was Bingo, he was delighted because the combination of letters and numbers in the game are right up his alley. Since Alex did so well the last time we took him, I had told Ed that he didn’t have to go and that I could take him myself. Nonetheless, Ed decided to go along with us, even though he was the only male there other than Alex. Even though I know he hates situations where he has to make small talk, he pleasantly chatted with people and cheered on Alex, who won four prizes. Besides being there for Alex, I know he was there to support me, to make me feel more comfortable in a relatively new situation.

As we celebrate Father’s Day today, I am thankful that God blessed my son with such a loving and caring father. Even though life with autism has meant that our life is much different than those families who have typical children, Ed makes the best of our situation, focusing on Alex’s strengths and not his weaknesses. In times of crisis, he provided the strength I needed to get through the situation, and in the day-to-day routine, he offers his opinions but trusts my judgment. While Alex can’t fully express his feelings, I know that he adores his father and thinks he’s the smartest and funniest guy he knows, and he knows Ed feels the same way about him. Through all the obstacles, their love has grown stronger, and I am so proud of both of them for the men they have become. Happy Father’s Day!

“For the Lord corrects those He loves, just as a father corrects a child in whom he delights.” Proverbs 3:12

Sunday, June 8, 2014

Commencement


Dear Class of 2014 (especially my two nieces who just graduated from high school),

As you listen to commencement addresses, you hear all sorts of platitudes about how to live your life. Some offer good advice, and you should pay heed. Despite all that you have learned in your education, you will learn so much more in life. Sometimes you will be prepared with the wisdom you have gained, but many times in life, experience will be your best teacher. I can confirm that truth from my own experience. Despite all I learned from my excellent education, nothing really prepared me for the most important role in my life as an autism mom. When I look at photographs of myself at your age, I see an innocent, wide-eyed, hopeful girl who had no idea what challenges she had ahead of her. Yet, raising a child with autism has made me do all those things your graduation speakers have told you to do—dream big, work hard, and never give up—in ways I never thought I could do.

Aside from just the day-to-day experiences of helping my son overcome the challenges autism has presented, I have learned valuable lessons from scriptures and country song lyrics that have reminded me what’s really important in life: patience, perseverance, presence, faith, hope, and love.

What no one tells you about life is that you’ll spend a great deal of time waiting for something—waiting for a phone call, waiting in line, waiting for something good to happen. While you wait, just learn to be patient, which will serve you well when you are waiting for situations to get better. As Amy Grant sings in “It Take a Little Time,” “It takes a little time sometimes to get your feet back on the ground. It takes a little time sometimes to get the Titanic turned back around. It takes a little time sometimes, but, Baby, you’re not going down. It takes more than you’ve got right now. Give it; give it time."

Part of that waiting process is plugging away and never giving up, especially when quitting would be so much easier. As I’ve watched my son struggle to do tasks that most people can do easily, he has taught me the value of perseverance. He knows that eventually he’ll accomplish what he has set out to do, and as he often reminds me, “Wait and see.” In the words of Leanne Womack’s beautiful ballad, “I Hope You Dance”: “Whenever one door closes, I hope one more opens. Promise me that you’ll give faith a fighting chance, and when you get the choice to sit it out or dance, I hope you dance.”

With all that waiting and working toward the future, we need to remember to savor the present, to appreciate all the good in the right now that we can easily miss worrying about the future. In her song “So Small,” Carrie Underwood offers good advice: “While you sit around thinking about what you can’t change and worrying about all the wrong things, time’s flying by, moving so fast. You better make it count ‘cause you can’t get it back.”

So how do we deal with all the worries in life? Faith will carry us through those times when we fear the unknown, the overwhelming, and truly terrifying.  Life with autism has strengthened my faith because I’ve learned that I cannot do things on my own, and faith has comforted me by assuring me God is in control. As Garth Brooks sings in “The River,” “There’s bound to be rough waters, and I know I’ll take some falls. But with the Good Lord as my captain, I can make it through them all.”

In those rough waters, faith carries us, but hope sustains us, reminding us that what may seem permanent is only temporary. As we look forward with anticipation, we know that things will get better. In the words of the Rascal Flatts song “My Wish,” “My wish for you is that this life becomes all that you want it to, your dreams stay big, your worries stay small, you never need to carry more than you can hold.”

While learning patience, perseverance, and presence will enhance our lives, faith and hope are vital to our existence. As the scriptures remind us, even greater than faith and hope is love. Without that overpowering force, our lives become meaningless. Love motivates us to help others, to be sacrificial, and to become the best people we can be for others’ sakes. Pure love guides us to do the right thing and reminds us that we’re never alone. As Lady Antebellum advises in their song “Compass,” “So let your heart, Sweetheart, be your compass when you’re lost, and you should follow it wherever it may go. When it’s all said and done, you can walk instead of run ‘cause no matter what, you’ll never be alone.”

Congratulations, Graduates, and as you step out into the “Real World,” I pray that you find patience and perseverance when you need it, enjoy the present, and remember to hang on to hope, faith, and love, which will always see you through any circumstance and help you fulfill your destiny in life.

“There are three things that remain—faith, hope, and love—and the greatest of these is love.” I Corinthians 13:13

Sunday, June 1, 2014

Right Place, Right Time


I don’t believe in coincidence. Too many remarkable yet seemingly random things have occurred in my life that remind me the hand of God is orchestrating events for my benefit or so that I may do some good. For instance, when I was pregnant with Alex, I developed a rather rare autoimmune blood disorder causing my platelet count to drop, leaving me at risk for bleeding. (Thanks to the healing of God, I no longer have this chronic disease.) To rule out other conditions, I underwent a bone marrow biopsy, a procedure often characterized as quite painful. Thankfully, I found the experience did not live up to its hype and was more of a feeling of pressure than of pain. Unfortunately, my test results came back inconclusive, requiring a second bone marrow biopsy. At the time, I was frustrated that I had to go through another biopsy, but I was more upset that I would have to wait longer for results that would rule out a potentially life-threatening condition.

After the second biopsy, which was as uneventful as the first, the doctor asked me to take the sample to the lab myself, which struck me as odd at the time. When I arrived at the hospital lab, I explained to the clerk that I needed to drop off a bone marrow biopsy, which seemed to surprise and horrify her at the same time, and she quickly called for a technician to deal with the situation. As I waited for someone to take my bone marrow sample, a young woman appeared behind me and politely told me that she had overheard me tell that the clerk that I’d had a bone marrow biopsy, and she wondered what that was like. She wasn’t being nosy; she explained that her little girl needed to have one and had heard they were terribly painful. As a mother, she wanted to be able to prepare her child and was worried about what she might have to experience. At that moment I knew why I needed to have two bone marrow biopsies and had to carry the second one to the lab myself—so that I could reassure a young mother that her daughter, like me, would get through this testing fine. As she thanked me, I could see relief on her worried face, and I knew that God had placed me at there at the right moment so that I could be of help.

When Alex was hospitalized two years ago for extreme anxiety and aggression, we were terribly upset that he would have to be away from home for the first time in his life yet knew he needed intensive intervention to get better. While we waited in the emergency room for the nurse from behavioral medicine to come get him to admit him for in-patient treatment, I prayed for a sign that we were doing the right thing. As I looked up, I saw that the nurse, who became one of Alex’s primary caregivers during his hospitalization, was wearing her identification tag on a lanyard nearly identical to the one I wear for my job. Our lanyards, emblazoned with the name Jeff Gordon and number 24, show our support for our favorite NASCAR driver. I knew at that moment God had sent her to mother Alex in my place when he needed specialized care we could not give. That small sign in the form of a fellow NASCAR fan reassured me that everything would eventually be fine.

A couple of weeks ago, I was chatting with one of the technicians at the pharmacy where we get Alex’s medications. As she saw the name of the psychiatric nurse practitioner who prescribes his medicine, she told that she also worked part-time at a medical facility in town and had heard that Alex’s nurse practitioner was moving her practice here. A few days later, we received a letter from his nurse practitioner confirming what the pharmacy technician had told me: she is moving her office to our town this summer. This change means that we will no longer have to drive forty minutes to see her; she will only be ten minutes away from our home. While she could have moved her office to several towns in the area, she chose to practice here. I know this move was not coincidental; God made this more convenient for us.

Yesterday, I had another one of those being at the right place at the right time experiences. Every few months, we have to take Alex for routine blood tests to make certain the medications he takes are the proper dosage and are not affecting his metabolism adversely, especially his liver and kidneys. Fortunately, Alex eagerly anticipates blood draws; he never minds having medical procedures and finds them strangely entertaining. I think we have been blessed to work with medical personnel who have always been kind and gentle with him so that he has no fear of doctors and medical procedures. In addition, I’m always tried to schedule appointments carefully so that he never has to wait long, which can make him anxious. Fortunately, we have also found a nearby lab where their kindness and efficiency always makes blood draws easy for Alex.

When we pulled into the parking lot, Ed and I noticed that the car parked in front of us had an Autism Awareness license plate, which caught our attention. After the registrar quickly processed our paperwork, a lab technician whom we had not seen before treated Alex very kindly and seemed to know instinctively how to work with him, even though we had not mentioned his autism, as we often do. Once again, he made us proud as he handled the blood draw calmly, never complaining a bit. As we were leaving, we thanked the lab technician, who commented that she has a son like him. I then noticed that her identification card lanyard was decorated with the autism puzzle pieces logo and realized that she, like me, is an autism mom. We could have taken Alex anytime to the lab, which is open 24/7, but we were supposed to meet this mom.

While Ed and Alex went to wait in the car, I talked to her briefly, and we compared notes. Although her son is younger, she has experienced many of the same things we have. As she expressed some concerns about recently putting her son on medication, I was able to reassure her how much the same medication had helped Alex. In a matter of minutes, we had bonded because we shared a devotion to our sons with autism, and we could empathize because of our similar experiences. After she had asked me a few questions, I sensed that she wanted to talk more, but we both knew that we didn’t have the time right then to do so. I wrote down my e-mail address for her so that she could contact me, which she seemed to appreciate, and she told me to ask specifically for her anytime Alex needed lab work. Once again, I knew that this meeting was not random; God intended for two autism moms to come together to help each other. Although I am confident that God always directs our steps, whenever these “coincidences” occur, He reminds me that His plan for our lives is good, reassuring me that in the end, everything will be all right.

“…He makes everything work out according to His plan.” Ephesians 1:11

Sunday, May 25, 2014

Looking Forward

As I mentioned in my “May Days” blog entry three weeks ago (5-4-14), Alex has been a little off this month. Suspecting that the ridiculously high pollen counts make him slightly irritable, we have tried to be especially patient and reassuring with him in recent weeks since he really can’t help his behavior. Nonetheless, his current obsession with bath time and his need to ask us repeatedly when he will take a bath every day has become tedious. Even though we answer him every time he asks, he still acts anxious. Since he responds better to verbal cues than spoken reminders, I have written reminders for him so that he can look at the memo instead of asking us. However, he carries this small slip of paper around the house with him and doesn’t always remember where he has put it. This creates a whole new level of anxiety because then he can’t find the paper with the time written on it and insists that we help him find his note instead of just writing a new one. Sometimes I think he deliberately “loses” the note just to watch us spring into action, searching the house high and low until we find it.

Yesterday Alex again started with repetitively asking what time he’d take a bath. After answering him several times and deciding that I did not want to spend my Saturday hunting for his reminder note, I came up with an idea. Having watched my middle school students (and a few of my colleagues who have imitated this concept) write reminders on their hands, I decided that I would write Alex’s bath time in the palm of his left hand. As I explained what I was going to do, he looked askance at me, yet also seemed fascinated. As I began writing 6:15 on his hand, I was reminded of the time several years ago when I came home from work to discover he had written dozens of pi digits on his foot and leg. When I asked him why he had done that, he nonchalantly explained, “Couldn’t find paper.”

Although I was a little worried that he might think that writing on himself was an acceptable alternative to writing on paper, “Desperate times call for desperate measures.” After I finished writing the highly anticipated time on his palm, he studied it and then asked me, “Is that a tattoo?” Having seen athletes with tattoos, Alex is not a fan of them and seemed concerned that I had permanently defaced his hand. I reassured him that it was not a tattoo because the numbers were temporary since the ink would wash off his hand when he did take his bath in the evening.

Throughout the day, we saw Alex checking his palm periodically to remind himself when bath time would be.  Not only thankful that this temporary tattoo reassured him and kept him from asking us the same question over and over, I was also feeling pretty proud of myself for coming up with a rather clever solution. At dinner, we watched him check his left hand a few times to view his reminder, which magically seemed to calm him. Still a bit concerned about the permanence of the ink, he asked when the numbers would be gone. I reminded him that they would wash off during his bath, which seemed to satisfy him. Then he asked us, “Is that something to look forward to?” As much as he found those numbers on his hand helpful, he was also looking forward to their disappearance, knowing that the event he was anticipating all day had arrived. Thus, I realized that Alex is even cleverer than I am because he’s figured out one of the best things in life—looking forward to something special.

At this time of the year when young people celebrate the end of the school year with proms, award ceremonies, and graduations, I feel a bit wistful that Alex has missed out on these celebrations. However, I’m grateful that he really doesn’t know what he’s missing and that he doesn’t fully realize what autism has denied him in life. For him, bath time, a seemingly ordinary event, is something to be anticipated and celebrated, a simple joy he savors. Even looking at the time written on his hand that reminds him of this upcoming event makes him happy. He doesn’t need a highly planned big celebration; little things in life that others would take for granted bring him contentment.

His ability to find spontaneous joy was evident this week as we watched the finales of the musical talent television shows The Voice and American Idol. At one point during The Voice, he suddenly and eagerly told me, “That’s my favorite song!” Although I don’t think he’d ever actually heard the song before, somehow it sparked an enthusiasm in him that made him smile and sway to the music. The next day, while we watched American Idol, he became equally enthusiastic as he recognized a familiar Fleetwood Mac song, which made him happily get up and dance. He had looked forward to the finales of these shows, and he wasn’t disappointed.

While I sometimes feel bad that Alex doesn’t get to experience the rites of passage most young people do, I realize that he also escapes many of the disappointments. For him, a relaxing bath or hearing a song he likes, familiar or not, makes him happier than going to a big celebration. Moreover, he has learned one of the great secrets of life—anticipation can be better than the actual event. As we wait with expectancy for Alex to make progress, we need to remember that looking forward to the future makes the wait easier. In the meantime, we should enjoy the seemingly small things that bring us happiness, as Alex knows. Looking forward is a good thing; maybe I should write that on my own hand.

“But if we look forward to something we don’t yet have, we must wait patiently and confidently.” Romans 8:25

Sunday, May 18, 2014

Annual Waiver Meeting


This week, we had our annual meeting with Alex’s “team,” a group of professionals whom we have chosen to work with him to help him reach his potential, and we were very pleased with how well things went. In August 2012, he qualified for the state Medicaid waiver that provides services to people with intellectual disabilities. In our home state of Indiana, parents typically place their children on the waiver waiting list and know that they will likely wait for many years—often more than ten years—before their children qualify. Recently, changes in this program have made the process move along more rapidly to ensure that those who need services get them instead of having to wait for them. We were especially fortunate that Alex’s waiver application moved along at lightning speed, thanks to a caring and persistent caseworker who helped us with the process, my ability to organize paperwork efficiently, and the grace of God who saw our needs. When he was approved for the waiver within only three months of applying, we felt as though we had won the lottery because this approval essentially means that he is eligible to receive thousands of dollars of support each year of his life. Although we have always somehow managed to provide the therapies Alex needed through our own financial means, we were pleased to receive assistance and relieved to know that he will be taken care of when we’re gone.

Part of the process of obtaining the waiver is learning the alphabet soup of acronyms associated with the program: CIH, DD, ICF/IID, LOCA, etc. Although these abbreviations are probably intended to make referring to their concepts easier, they seem to create a wall between those who know them and those who don’t. During our quarterly meetings with Alex’s team, Ed has noted that he’s glad I understand the lingo, which make me feel as though I’ve mastered some sort of secret handshake. For instance, Alex receives funding from the Community Integration and Habilitation Waiver, more commonly known as CIH. The intention of this program is to keep people out of institutions and in their homes or residential placements within the community, such as group homes. This program was formerly known as the DD Waiver, or the Developmental Disabilities Waiver, but most autism parents knew it better as the Autism Waiver. The CIH is a type of ICF/IID Waiver, or Intermediate Care Facility for Individuals with Intellectual Disabilities; another is the FSW, or the Family Supports Waiver. An intellectual disability is defined as one that begins before age 22, is expected to continue indefinitely, impairs intellectual functioning and at least three of six additional areas: self-care, language, learning, mobility, self-direction, and independent living. To determine services needed, the LOCA, or Level of Care Assessment evaluates how much assistance the person needs with daily living skills. To qualify for the ICF/IID, the LOCA must determine that the person needs 24-hour supervision, as Alex does. To summarize, Alex receives the CIH Waiver, formerly known as the DD Waiver, a type of the ICF/IID Waiver, because his LOCA showed he needs constant supervision due to his autism. Of course, autism parents are used to all these lettered programs after years spent working with SLP, OT, PT, SI, ABA, IEP, and ACR for our kids with ASD. Frankly, it’s a wonder our kids ever learn language when they grow up hearing all the special needs jargon around them.

Aside from all the abbreviations and regulations, the waiver program is intended, like special education, to provide needed services to help the person overcome obstacles the disability brings. Just as the special education concept of “least restrictive environment” works to integrate special needs students in classrooms with typical students, the waiver is intended to integrate people with intellectual disabilities in the community by providing them with support to help them be as independent as possible. In special education, the annual case review (ACR) brings together those providing services for the child to assess progress and needs to determine what services should be provided, and the annual waiver meeting functions in the same way. For Alex, this means our family meets with his case manager who oversees his services, prepares his annual state budget for those services, and acts as an advocate, along with his behavioral therapist, music therapist, and a representative from the company that provides respite care. As in a special education annual meeting, basically everyone in the waiver meeting has an opportunity to make comments as the case manager takes notes and prepares the paperwork to guide service plans for the upcoming year, which requires several signatures of the participants. Even though the meeting took over an hour and required him to sign several electronic documents, Alex was remarkably patient and pleasant the entire time, which shows the progress he has made. In past quarterly meetings, he has complained of being tired or looked for ways to escape, claiming he needed to get something to drink or use the bathroom. Other than checking his watch from time to time, Alex seemed unfazed by having to sit through the meeting, and we were proud of how well he handled himself.

Besides being quite pleased with Alex’s progress, as evidenced by his behavior during the meeting and as reported by his therapists, we were reminded how fortunate we are to have found excellent professionals to work with him who genuinely care about him. The warmth of their interaction and their positive comments about Alex made us grateful that we have the support we need to help him develop the skills he needs in life. For years, we searched for the right people to work with him and often found no one who was willing or able to work with a child diagnosed with autism. Now we have a wonderful team who brings out the best in Alex and supports us as we guide him to develop his skills toward greater independence. After the struggles we have encountered in dealing with the obstacles autism has presented, we finally have professionals who know how to help, which comes as a great relief and a tremendous blessing. Knowing that God’s hand has led these people to us, we believe that He will continue to oversee Alex’s progress as he moves forward to fulfill God’s plans for his life, reassuring us that, in the end, everything will be all right.

“For He has not ignored or belittled the suffering of the needy. He has not turned His back on them, but has listened to their cries for help.” Psalm 22:24