Finding Compassion

A few days ago, I had an interesting encounter when I stopped to get take-out sandwiches for dinner. While I was waiting in a booth until the order was ready, I noticed that residents of our local group home for disabled adults were enjoying dinner with their caretakers. I have always been impressed when I have seen the caretakers and residents out in the community because the residents always seem to be having a good time, and their caretakers treat them with kindness and respect. As I was sitting there, one of the caretakers brought a young woman by the hand past my booth. When the young woman saw me, she stopped and smiled, and I smiled back at her. Then she began to pat me on the shoulder gently, so I said hello to her. Her caretaker had a look of embarrassment, apologized to me, and tried to lead her away. I assured them that she was fine as she continued to pat my shoulder, and I explained to the caretaker that I understood because I have a son with autism. The caretaker seemed relieved that I was not being bothered or made uncomfortable, and she told me the woman’s name. When I said her name, she began to make cooing noises, apparently unable to speak, but conveying joy in her eyes, smile, and voice. Then her caretaker told her to shake my hand, which she did, and as she was leaving, we waved goodbye to one another. Despite her inability to speak, we were able to communicate with each other, and I hope that she sensed that I was pleased that she wanted to reach out to me.

Before Alex was diagnosed with autism, I don’t think I would have been as comfortable being around people with disabilities. While I always admired those who chose to work in special education, I didn’t feel that I had the patience or the understanding needed to help students with disabilities overcome the obstacles they faced. After living with Alex and his idiosyncrasies all these years, I have developed a comfort level and a compassion for people with special needs. Through Alex I have learned to see past the differences special needs bring and to search for ways to communicate on a level we both understand. The reward of being able to interact helps me overcome any sense of awkwardness or inadequacy on my part. Despite my natural shyness, I hope that I convey a sense of openness so that people like the young woman in Culver’s feel comfortable in approaching me. One of the students at my school who has autism eagerly engages me anytime he sees me in the halls. Even though he has never been in my classes, he treats me as an old friend, running over to talk to me. Typical of autism, he stands too close, talks too loudly, and never looks at me, but he seems to sense that I am as pleased to see him as he is to see me. One day while I was shopping at Walmart, he came running up to say hello, apparently excited to see me in a setting other than school. His mother seemed embarrassed by his assertive behavior, but I reassured her that he was fine, and I hoped that she knew I understood his behavior and her concerns, as well.

Raising Alex has helped me to develop empathy; those who have not had a family member with special needs, yet interact with ease and compassion, always impress me. In an earlier blog “Support,” I described how blessed I am to have friends who take a great deal of interest in Alex and show kindness to him through various gestures. Recently, I was once again reminded how fortunate I am to have these friends because they express their caring for Alex in ways that show they understand, even though they haven’t experienced life with a special needs child directly. For instance, my friend Crock, who asks about Alex regularly and always reaches out to him by asking me to tell Alex he said hi, brought me a pedometer to give Alex this week. He knows that Alex loves numbers and devices that calculate, so this was a perfect present, and once again he demonstrated how much he understands our situation. Similarly, my friend Danne, who has been seeing the same chiropractic internist Alex has, brought me a gift bag of healing with Epsom salts and baking soda for his baths, as recommended by the chiropractor, along with a pure facial cleanser for his face, which has been breaking out lately. As if this kind gesture for my son weren’t enough, she included a beautiful inspirational card to remind me she cares. Yet another reminder of concern for Alex came from my friend Jody, whose husband, like Alex, is a NASCAR fan. Last summer, after they went to the NASCAR Brickyard 400 race, she gave Alex her lanyard with the Brickyard 400 logo and the ticket with a diagram of the Indianapolis Motor Speedway. Since then, Alex has worn or carried around this lanyard, at times only taking it off to sleep, but making certain it was beside his bed so that he could put it on when he awoke. During his recent moodiness, one thing that would make him smile was looking at the lanyard, and I know that would make Jody smile, as well. Last weekend, her husband went to the Chicagoland Raceway, where he learned to drive a NASCAR car, and Jody asked him to keep an eye out for something to bring Alex. She told me that he called her from the track to tell her there really wasn’t anything for Alex, except that he could bring him back a real NASCAR race car tire. Knowing that I wouldn’t be thrilled for Alex to sleep with a tire, Jody wisely told him that probably wasn’t a good idea. Nonetheless, I was touched that both of them were thinking of Alex and trying to find something for him. To learn true understanding I had to raise a child with autism; therefore, when I find compassion from others who understand Alex without having raised a special needs child, I realize how blessed we are to have them in our lives.

“Light shines in the darkness for the godly. They are generous, compassionate, and righteous.” Psalm 112:4

Storms

When Alex was younger, he was terrified of storms. Here in Northwest Indiana, spring and summer weather brings many thunderstorms along with frequent tornado watches and warnings, such that most people become accustomed to stormy weather. We never knew whether Alex was afraid of the flashes of lightning, the rumble of thunder, the howling winds, or the annoying beeping of severe weather warnings. With his sensory issues, any of these sights or sounds could have been troublesome for him. In addition, his strong attachment to his primary sources of entertainment in the forms of cable television and computer internet access may have caused him to fret more about the potential loss of electricity, cable, or internet power, due to storms, than most people do. Whatever the reason, Alex would basically melt down during major storms, causing us to dread weather warnings.

The worst circumstances for us were thunderstorms that suddenly appeared in the middle of the night, waking Alex from a sound sleep and sending him into a screaming fit. Despite our best attempts to comfort him and reassure him he was fine, he would continue to yell and pound on his bedroom wall. No matter what we did, he wouldn’t settle down until the storms outside subsided, which meant that all of us endured storms inside the house, as well, and all three of us dealt with sleep deprivation. At some point, perhaps during a tornado warning that sent us to the safety of our finished basement, we realized that the best place for Alex during any storm was the quiet of the basement, where he couldn’t hear the crack of thunder or the whipping winds, nor could he see the flashes of lightning. Unaware of what was going on outside, he would settle down and go to sleep in the spare bed in the basement while Ed and I slept on the pull-out couch in the adjoining basement family room. Once we had arrived at such a simple solution to a major problem, we knew to take him to the basement to sleep any time storms were predicted in the night so that we could completely avoid his having a fit about the weather and ensuring we would all get a good night’s sleep. Alex thought that sleeping in the spare bed was a real treat and willingly headed for the basement as though he were staying at a luxury hotel. About the time we figured out how to deal with his fears of storms, he seemed to overcome this anxiety. We noticed that he seemed less bothered by storms during the day, not fretting when they were announced on television, nor becoming upset when they arrived outside. The true test, however, came when he not only didn’t become agitated during storms in the night, but also slept through them peacefully, completely undisturbed by the unsettled weather.

As we’ve been dealing with some different storms lately in the form of Alex’s somewhat detached behavior, I’m reminded that the storms always eventually pass and that overcoming the fear of those storms makes life easier. While we’re still not certain why Alex isn’t as energetic and happy as he normally is, we are thankful that we know he’s not physically ill, as confirmed by his recent blood tests. Because we see him “happy hop” through the house and smile in amusement every day, we know that our Alex is still in there, even though he isn’t quite his usual enthusiastic self. Looking for gradual improvements, we are pleased that he is spending more time sitting upright instead of lying on the couch, and the angry outbursts we faced a few weeks ago have nearly completely subsided. Moreover, he has been more willing to go places, which he was avoiding for a couple of weeks. However, when he chooses to sit alone in a room for periods of time, not talking or responding to our questions, we worry about why he is acting withdrawn and hope the cause is simply teenage rebellion or his way of dealing with the irritation of high pollen counts in the air. Whatever the reason for the changes, we feel certain he will emerge from this phase soon, just as he has overcome other behavioral issues in the past, and we will be grateful that Alex has again made progress. Until then, we ensconce ourselves safely in a figurative basement, and we keep hoping and praying that this storm will pass so that we can enjoy sunny skies again.

“Do you know how God controls the storm and causes the lightning to flash from His clouds?” Job 37:15

Signals

Because Alex has always had such acute hearing, Ed and I must be careful about what we say, even when we think Alex isn’t within earshot. The mere mention of something he loves, such as shrimp or Walmart, can bring him running from another room to see why we’re discussing something important to him. Even whispered comments never escape his notice. Speaking in hushed tones often seems to draw Alex’s attention even more than if we speak to him directly, as though he knows that we are trying to keep him out of a loop from which he refuses to be excluded. In addition, we couldn’t take advantage of the spelling tactic many parents employ in front of their young children. Since Alex had hyperlexia, or precocious reading skills, he was able to decipher any words we spelled aloud in front of him; I suspect he thought this was a fun game. Knowing that we couldn’t always wait until Alex had gone to sleep at night to communicate things we didn’t want him to know, Ed and I have devised a set of signals that Alex appears to pay no heed.

When Alex was in special education preschool, they tried to teach him some basic signs from American Sign Language. With his poor fine motor skills and lack of interest in communicating with others by using his hands, he never learned any of the signs. He wouldn’t even point to things that held his interest; he’d simply put his hand flat on an object or a picture in a book to draw attention to it. His lack of interest in gestures and other forms of nonverbal communication extends to other people, as well, and he never seems to recognize the various hand signals Ed and I give each other throughout the day. For example, if one of us—usually me—brings up a topic that the other knows might set off Alex, the index finger to the lips is a gentle reminder to stop talking immediately before Alex realizes what has been said. When one of us needs to tell the other something we don’t want Alex to hear, we summon the other discretely with the index finger motioning the other to follow into another room where Alex can’t hear us whispering. If Alex is doing something interesting or amusing, one of us will get the other’s attention by subtly pointing to him so that the other can also observe the behavior but still keep Alex oblivious to the fact that we’re watching him.

The signal Ed and I use most during the day is the “thumbs-up.” Whenever either of us comes home while the other has stayed home with Alex, the first thing we want is a report of how Alex has been, but we don’t want to talk about his behavior in front of him. As soon as Ed or I walk in the door, we look expectantly to the other for an overall assessment of how things have gone. A rolling of the eyes, shaking of the head, or moving a flat hand back and forth to indicate “so-so” are the nonverbal messages we sometimes convey to each other but dread getting upon our return home. Fortunately, most of the time, Ed and I are able to reassure each other that Alex has been fine by giving the thumbs-up. I know that I always breathe a big sigh of relief when I see Ed give me the positive thumbs-up sign, and I am confident that he feels the same way. However, we look forward to the day when Alex’s behavior consistently merits a thumbs-up assessment so that Ed and I don’t need to use signals to communicate; we’ll just know that everything is fine.

“How great are His signs, how powerful are His wonders! His kingdom will last forever, His rule through all generations.” Daniel 4:3

Rules

The other day I was digging through a desk drawer and ran across a reminder of a younger version of Alex. Typed neatly and carefully placed in a clear plastic sheet protector was a list entitled “Alex’s Rules.” Although I’m not sure why I saved this rules sheet from probably six years ago, I do remember that we used to have it hanging on our refrigerator as a constant reminder to Alex about appropriate behavior and what would happen if the rules were not obeyed.

The rules listed on the sheet are concise and clear and reflect some of the issues we were dealing with when he was a young teenager. The first rule, “No bad words,” was instituted because Alex thought it was amusing to say profanities to get reactions. He knew that cursing at inappropriate times, such as when we were waiting at the checkout counter of stores or when we were pulled up to a speaker in a drive-through lane would mortify Ed and me, which he found hilarious as he would burst into a fit of giggles after saying something rude. Despite our best efforts to ignore his “F-bombs,” we couldn’t hide our embarrassment when he chose to unleash them in public. The next item on the list, “No throwing, kicking, hitting” reveals the beginnings of his anxiety attacks becoming aggressive and physical. Instead of crying when he was upset, Alex would punctuate his frustration or fears by hurling something across the room or letting us know his displeasure by kicking or hitting us. Fortunately, he has learned better self-control over time. Another rule, “No whining,” reminds me that he used to drive us crazy with complaining in a whiney voice; thankfully, that stage did not last long. The final rule of the four, “No arguing,” probably shows how typical Alex was at that age, challenging what we told him, trying to assert his independence. Realizing that Ed and I were not going to change our minds when he whined or argued, Alex soon learned that these actions were wasted energy and outgrew these behaviors fairly quickly, as he also did with saying bad words. In fact, I haven’t heard Alex whine, argue, or say any profanities in years, which shows that he has matured over time and learned appropriate behaviors.

Below the list of rules on the typed sheet are the potential “Consequences” for breaking the rules. The three possible consequences Alex faced included the following: going to his room, not going places, and/or no Saturday surprise. Essentially, we were using traditional methods—time out, grounding, and denying rewards. As I recall, sending him to his room was not terribly effective because he liked going to his room; he would simply read a book or play a handheld game. On the other hand, being threatened with not going places, something he eagerly anticipated every day, worked like a charm. However, when we reminded him that having to stay home was a possibility, he would sometimes launch into arguing or whining, which didn’t help his case at all. The reward system, which I described in an earlier blog entry entitled “Using Rewards,” required that Alex behave himself fairly well for a week in order to receive a small token, such as a book, toy, or money, called a Saturday surprise. We found that the threat of losing a Saturday surprise worked much better later in the week when the reward was imminent. Earlier in the week, I think Alex believed that he had time to redeem himself if he acted up, or maybe he thought we would forget about the behavior that might prevent his receiving the Saturday surprise. Nonetheless, this system usually worked reasonably well as Alex tried to behave well enough to get his weekly prize. In reviewing this rules list, I am reminded of the progress Alex has made and continues to make, and I feel grateful that we no longer have to listen to him whine, argue, or say profanities. Extinguishing these negative behaviors gives us a sense of accomplishment as well as a feeling of relief that Alex has, indeed, matured and can use language in a positive, rather than negative, way.

“So Manoah asked him, ‘When your words come true, what kind of rules should govern the boy’s life and work?’” Judges 13:12

Results

As I mentioned last week in my blog post “Modifications,” we had some blood tests run on Alex recently because he has not been his usual energetic and congenial self. Waiting for test results always proves nerve-wracking for me, wondering what the outcomes might reveal. In addition to allergy tests, the doctor ordered a thyroid profile, a complete blood count, and a comprehensive metabolic panel. Basically, if anything were really wrong with Alex’s health, something would show up in one of these tests. As the days passed until our appointment to get the lab reports, I tried to reassure myself that Alex was fine because his appetite had been excellent, even though he has acted lethargic and irritable. One evening, I even convinced him to let me take his temperature, thinking that he would run a fever if he were ill. Fortunately, his temperature was normal, which was a good indication of his overall health.

When we received the results on Friday, we were pleased to find that Alex is remarkably healthy. All of his blood counts are within normal range, which eliminated my fears of anemia or a more serious blood disorder. Thankfully, his metabolic tests showed that his major organs—heart, kidneys, and liver—are all functioning well, too. Glucose levels well within the normal range ruled out my concerns about hypoglycemia or diabetes. Another indicator of his healthy metabolism, the thyroid profile, showed that, unlike me, his thyroid and thyroid hormones all function properly. As I quickly scanned these test results, I breathed a sigh of relief that all of Alex’s numbers fell within range, and the “Out of Range” columns were completely empty. Besides these wellness tests, Alex’s allergy tests were also quite encouraging. The last time we ran food allergy tests on Alex when he was seven years old, his scores revealed that he was sensitive to a number of foods, including milk, wheat, glutens, eggs, green beans, bananas, and a few others. At that time, we put him on the strict gluten-free and casein-free diet, which he has remained on for a dozen years. Before we ran this test again, the doctor advised us that the results would probably not show sensitivity to milk and glutens because Alex has kept them out of his diet for many years. Nonetheless, I thought he might show more food allergies, but this time he only showed strong reaction to lobster, which he rarely eats, and chestnuts, which I doubt he has ever eaten. Also, he showed moderate reaction to barley, which he doesn’t eat because it has glutens, and olives, which he does eat in the form of black olives and olive oil. The good news is that avoiding these foods will be no hardship for him. Besides these foods, he showed reaction to the artificial sweetener Xylitol, the food additive potassium bromate, the pesticides heptachlor and pentachlorophenol, and the plastic additive dibutyl phthalate. Since he doesn’t consume Xylitol or potassium bromate (which is added to baked goods that are not on his gluten-free diet), we don’t need to worry about exposure to these additives. The exposure to chemicals in the air is likely inevitable and difficult to avoid, plus his current behavior is unlikely related to these substances; therefore, we’re not concerned about these findings, either. Basically, all of the data from these tests revealed Alex to be quite healthy, which was comforting.

Even though we were pleased that the results were encouraging, I was a little disappointed that we didn’t have any answers as to why he has been more listless than usual. Somehow I had hoped that we could find a simple solution to the problem that has vexed us the past few weeks. The most telling piece of information we have gained through this process—other than the reassurance that Alex is not physically ill, of course—is that he apparently no longer needs to take melatonin. During the vitamin vacation we have given him the past two weeks to see how he reacted without his various supplements, we discovered that he no longer needs melatonin to sleep, as he previously did. Perhaps he has had too much melatonin in his system, which would explain why he has been less energetic than usual. We plan to keep him off melatonin and hope that his energy level returns to normal. In the meantime, we watch for small signs of improvement and have been pleased to see him sitting upright more during the day instead of crashed on the couch. In fact, Ed commented that yesterday Alex had been the most alert and happiest he'd seen him in weeks, which was a nice change. As we wait for this phase to pass, we are thankful that our prayers for Alex to be healthy have been answered and try to maintain patience, anticipating improvements that restore him to his happy, enthusiastic self.

“Confess your sins to each other and pray for each other so that you may be healed. The earnest prayer of a righteous person has great power and produces wonderful results.” James 5:16

Modifications

Recently, Alex hasn’t been himself, or as his music therapist aptly described him, “He’s a little off.” For Alex, that means instead of being energetic and good natured, he’s lethargic and irritable. Since teenagers can be lazy and sullen, we didn’t worry about it too much at first. In fact, we always hope that any change might be a sign of progress. However, after watching him sit hunched with his head down, not doing anything but moping, we decided this was not a good thing, nor a passing phase. The activities that previously brought him joy—watching tv, surfing the internet, and playing video games—hold no appeal for him currently. When we try to engage him activities or conversation, he resists our attempts to interact with him, closing his eyes and talking softly in one-word responses to questions: “yes” or “no.” Because he cannot verbalize his feelings well, we don’t know whether he’s depressed, but his flat affect is concerning. Although he insists that he feels fine, we suspect something is amiss physically as he’s sleeping longer than usual, and he’s having skin issues in the form of breakouts and dandruff.

Since his doctor who specialized in nutrition and wellness retired at the end of last year, I’ve been searching for one who has a similar philosophy to her and is receptive to the biomedical treatments we’ve been doing with him for several years. Although we found a family doctor who is kind and in whom we have confidence, he is more traditional in his approach. After some searching on the internet, I found a local chiropractic internist who emphasizes a holistic approach, much like his previous doctor, and made an appointment with him last week. Encouraged by the overwhelmingly positive recommendation a close friend had given me regarding this doctor, I was hopeful that he could help Alex. During our first appointment, I was impressed by how caring and concerned he was about Alex as well as how he interacted with Alex in a compassionate manner. When Alex wouldn’t look at him, he would tilt his head to be in Alex’s range of vision. After asking us several questions about Alex’s symptoms, he showed sympathy for our worries and told us that his best guess was that Alex is in allergic shutdown mode and that his detached behavior is an attempt to cope with the overwhelming stimuli around him. His diagnosis made perfect sense to me, and I was touched by his genuine kindness to us and Alex when he tapped Alex gently on the knee to get his attention and told him, “Alex, I’m going to do my best to figure out what’s making you not feel good so that you can feel better and enjoy your summer.”

The first suggestion that he made was to take Alex off all his supplements (multivitamin, calcium-magnesium, GABA, evening primrose oil, and probiotics) as well as his over-the-counter allergy medication. When I told him that Alex needed melatonin to sleep at night, he recommended a brand that he felt was purer than the current brand Alex was taking. He explained that since supplements aren’t regulated as closely as prescription medications, their formulas and inactive ingredients may vary, any of which could be causing reactions in Alex. We agreed to a “vitamin vacation,” but he did recommend that we keep him on his prescriptions of generic Prozac and methyl vitamin B-12 injections. In addition, he felt that that over-the-counter lithium drops we use were safe to continue since they came from a highly reputable company. In addition, he scheduled a series of blood tests to check Alex’s overall health and a battery of allergy tests. After a meltdown earlier in the day, Alex was very cooperative for the blood draw, and we are eagerly awaiting the test results when we see the doctor again this week. In the meantime, we have gradually weaned him off melatonin, which he has taken for more than twelve years, without any negative side effects. In fact, since imposing the vitamin vacation, Alex seems a little more energetic and less irritable than he was last week. Every improvement gives us encouragement, and we are hopeful that the chiropractic internist and test results can shed some light on what may be affecting Alex so that, indeed, Alex can feel better, and we can all enjoy our summer.

“Lord, your discipline is good, for it leads to life and health. You restore my health and allow me to live!” Isaiah 38:16

Motherhood

All I ever wanted to be in life was a mother. In choosing my career, I only considered those jobs that I felt were closest to mothering and that involved nurturing and caring for children—nursing and teaching. In addition, I wanted a job that would allow me to be home as much as possible so that I could be the kind of mom I wanted to be. While I had no idea that I would eventually become an autism mom, I was dedicated to the idea of being a devoted parent long before I ever had Alex. Thankfully, the job I chose permitted me to be home with Alex a great deal of the time as I was blessed with a part-time teaching schedule after he was born. Moreover, Ed’s position as a college professor enables him to have a schedule that balances mine so that at least one of us can be home with Alex at all times. With his special needs, this rare schedule has been ideal, and I am thankful that not only I have been able to be an at-home mom most of the time, but also that Ed takes such wonderful care of Alex when I’m not home.

On this Mother’s Day, we honor the women who took care of our physical, emotional, and spiritual needs throughout our lives. While mothers often take on many thankless tasks because their children don’t always recognize the effort and worry behind them, they make sacrifices purely out of the unconditional love they have for their children. For the moms of children with special needs, the added responsibilities can be overwhelming, yet they strengthen the bond between mother and child because, as my own mother has said, taking care of a child makes you love that child more. When potty training takes long beyond the typical time, when we take our children to countless therapies hoping to improve their skills, and when we celebrate the smallest milestones because we know how big they really are, we moms of special needs children know that we do these things not out of obligation but with a deep love, which blesses us and keeps us going. When well-meaning people who have typical children tell us, “God never gives you more than you can handle,” we smile and say nothing, knowing that this comment is intended as a compliment. However, as one of my closest friends who has an adult special needs child and I can attest, throughout the years we’ve sometimes questioned God, asking, “Lord, do you know what you’re doing? You’re overestimating me, I think!” Nonetheless, despite what we may lack in courage and wisdom, He somehow grants us the perseverance and strength to move forward when we have no clue what we’re doing. Often when the fears and frustration have reached a peak, our children have breakthroughs that reassure us that while progress is not always steady, it is always possible.

In the more than nineteen years that I have been Alex’s mother, I have learned the most important lessons in life: hope, faith, and love. Taking care of him has brought me the greatest joys and the greatest tests, but everything has shaped my life for the better. I know, however, that I would not have been equipped to be his mom, had it not been for the outstanding example I was blessed to have in my mom. Besides her devotion, love, compassion, understanding, and wisdom, she has been a woman of faith who has taught me to trust in God at all times, but especially when times were uncertain. Not only has she taken care of me through the years, supporting and encouraging me, but she also has always been my closest friend who knew what I was thinking and said what I needed to hear. As Alex’s grandmother, she has found ways to interact with him on his terms in ways that he finds comfortable, and when he is asked to name a friend, he always names her: “Nanny.” As much as I needed my mom when I was a child, I realize that her calming presence, sense of humor, and good advice have been even more valuable as I have gotten older. Therefore, I find great truth in the words written on a plaque I gave her several years ago: “Long life to her because there’s no other who can take the place of my dear mother!” Today and every day, I thank God for my son and my mom for blessing my life so richly.

“So give your father and mother joy! May she who gave you birth be happy.” Proverbs 23:25

Camera Adventure

Over the weekend, Ed took Alex on his first camera adventure. Thinking that seeing the world through Alex's eyes would be interesting for others, he found a digital camera that he believed Alex could use with a little bit of help. One of the prerequisites was that it needed to be inexpensive since Alex can't always be trusted to handle electronics carefully. (For example, last month we had to replace the hard drive of his laptop after he knocked it off a table.) After browsing through the Walmart aisles, Ed bought Alex a Vivitar camera for ten dollars. If Alex dropped it, hurled it, or simply had no interest in using it, we weren't out much. Of course, the resolution wasn't as clear as one would find in a more expensive camera, but the effect is reminiscent of a tapestry, as seen below in Alex's attempt to capture the image of daffodils.



Similarly, his photograph below of tulips has the same blurring reminiscent of Impressionist paintings that creates a beauty of its own.



Of course, the picture below of Alex is one Ed took with his camera which produces greater clarity. To be honest, Alex wasn't as excited about this first camera trip as Ed was, but he hasn't been eager to do much lately anyway. To convince him to give the experience a try, I emphasized that he was going to the park, which is one of his favorite places. He may have been surprised when he got there that there were no basketball hoops or baseball fields, as there are at the parks he normally visits. Nonetheless, he seemed to enjoy walking on the path around the flower-filled gardens and wooded areas.



Hopefully as he takes more pictures, Alex will give us a glimpse into his perspective on the world and allow us to see things as he does.

"For a man's ways are in full view of the Lord, and He examines all his paths." Proverbs 5:21

Cast Adrift

When I was a kid, my aunt, uncle, and cousins from West Virginia would come to visit us every summer. My family eagerly anticipated these annual get-togethers, which included trips to the museums and zoos in Chicago and the Indiana beaches of Lake Michigan. For one outing, we went to a private beach where there were no lifeguards, and flotation devices such as rafts and inflatable rings were not prohibited, as they were at the state park. My cousin, who was probably about eight years old at the time, was happily floating along in her brightly-colored inflatable ring when the waves began pushing her out further in the lake and into water that was over her head. Since none of the adults or the kids were good swimmers, this was a potentially dangerous situation. As I recall, every time that someone reached for her to pull her back closer to the shore, she seemed to move further away. Fortunately, my uncle was able to grab her and bring her back to safety, and we then understood why inflatable toys were not allowed in the lake. For years, my aunt had nightmares about this incident in which she kept reaching for my cousin as she gradually bobbed away, pulled by the strong forces of the water.

After becoming a parent myself and especially after Alex’s autism diagnosis, I fully understood my aunt’s fears that haunted her dreams. As parents, we try to protect our children from dangers real and imagined, and the terror that something might allow them to drift away from us into deep waters makes us struggle to control every situation that might harm them. My sister’s daughter showed great insight for a child by commenting once that her mother would like to live in “Pillow Land,” where she could wrap her children in pillows to protect them from anything that could hurt them. With Alex, we not only have the typical dangers that worry us, but we also have the added concerns because of his communication and social skill issues. When we call him, he doesn’t always answer or come to us. If he were separated from us in a crowd (although highly unlikely because Ed and I keep close tabs and sometimes a “death grip” on him), I’m not certain that he would know how to ask for help. Moreover, he doesn’t seem to have an awareness of moving cars that could hit him in a parking lot, so Ed and I continually remind our six-foot-tall son, as most parents do with toddlers, “Wait! Watch for cars!” Autism is that natural force that could potentially pull him, much like the unpredictable waters of the lake, into situations where he would be over his head and cast adrift.

Aside from the physical dangers that we must constantly assess and prevent Alex from venturing near, Ed and I must also keep Alex from wandering into his own world, where he separates himself from us and everyone else. In that world, he could lapse into obsessions about numbers or anxiety about fears that seem irrational to most people but are very real to him, and therefore, to us. Lately, as he has been choosing to spend more time alone, we wonder if this is a natural progression of maturity or a warning sign that he is becoming less socially interactive, which would be a step backward in his progress. On one hand, we’re pleased when he can entertain himself by reading, playing video games, or working on the computer, but on the other hand, we don’t want him to lose the skills he has gained in social interaction. When we sense he is drifting away aimlessly, we pull him back where we can reach him, engaging him in conversation and shared activities. Even though Alex sometimes acts annoyed that we interrupt his alone time, we need to make sure that we can always still get to him. Until we are certain that Alex can handle himself safely and socially, Ed and I will continue to keep him close, making sure that we are always there to guide and protect him.

“When you go through deep waters, I will be with you. When you go through rivers of difficulty, you will not drown. When you walk through the fire of oppression, you will not be burned up; the flames will not consume you. For I am the Lord, your God, the Holy One of Israel, your Savior.” Isaiah 43:2-3