Sunday, November 23, 2014

The Kindness of Strangers

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

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

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

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

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

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

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

Sunday, November 16, 2014

Decisions, Decisions

 
Last evening during a Moms’ Night Out with two of my younger friends, who are currently on maternity leave, we found that the majority of our conversation revolved around our children. With our kids safely at home with their fathers, we were relieved of mommy duty for an hour and a half, but still foremost in our minds and hearts was the well being of those children. We discussed feeding, sleeping, and keeping our kids healthy, along with the dilemma of returning to work or not. Our shared devotion to our children binds our friendship now even more than our initial bonds of a shared workplace. We can support and understand each other because we are in similar situations, and a primary concern we share as mothers is making the right decisions for our children.

Of course, my friends are new to motherhood and responsible for the care of infants while I have been parenting for nearly twenty-three years and am still responsible for an adult, which brings challenges not unlike those my friends are currently facing. Like them, I must make sure Alex eats properly, gets plenty of sleep, and gets proper medical care. Most parents of young adults have relegated these decisions to their independent children, but autism impairs Alex’s ability to make important choices on his own. Sometimes I must even guide him in rather simple ways, such as telling him that bologna, orange juice, and cookies are not a good snack combination, especially right before bedtime.

On one hand, I’m glad that we still have the power to protect Alex that parents of other children his age do not. He can’t drive a car, so we don’t have to worry about him driving recklessly. He isn’t in college, so we don’t have to be concerned as to whether he’s keeping up with his studies or not. He doesn’t date, so we don’t have to worry about someone breaking his heart. While keeping him safe is nice, I wonder if he misses the rites of passage other people his age enjoy.

On the other hand, since Alex can’t make important decisions for himself, we feel a tremendous sense of responsibility to make the right choices for him. In true concerned mother fashion, I often find myself questioning if we’re doing the right thing. In some aspects, I feel totally confident, such as managing his disability funds. Appointed by Social Security and the state as Alex’s authorized representative, I allocate his money as carefully and fiscally responsibly as I manage our own, finding the best deals and never wasting a cent. Legally assigned by Alex as his health care representatives, Ed and I make sure that Alex gets the best medical care to keep him healthy, just as we always have throughout his entire life.  However, when it comes to deciding what support services he needs, I find myself weighing all the options, trying to determine what is best for him, hoping to make him more independent in the long run.

Indeed, realizing Alex’s need for greater control of his own life, I have tried to give him options so that he can learn to make decisions. Even in seemingly small choices such as whether to wear the blue shirt or the red one, what to eat for lunch, or what to watch on television, I want him to communicate what he wants. When presented with a choice, trusting my judgment, he will often ask, “Which would be best?” After reassuring him that no answer is wrong, he can usually pick one of the choices.  Sometimes he tells us that it’s “a tough decision,” weighs his choices, and then decides. However, I understand his dilemma because I often wonder myself which would be best.

In the times when I doubt myself, I have to look at the successes to remind myself that we do what’s right for Alex. After his recent oral surgery went amazingly well—much better than anyone could have anticipated—we looked back on all the steps we made along the way to get to that successful recovery. Not satisfied with the recommendation by Alex’s dentist to wait to remove his decaying upper twelve-year molars until they were bothering him and by his recommendation of an oral surgeon with a poor reputation, I decided to take him to my dentist, whom I trust completely. He recommended removing Alex’s wisdom teeth at the same time and referred us to an experienced oral surgeon. The skilled oral surgeon not only successfully removed the teeth that were causing problems, but he also took various precautions to prevent complications, namely pain, bleeding, swelling, dry sockets, and infection. Consequently, Alex came through a rather complicated procedure without any problems. Moreover, he was deemed a “great patient” by the oral surgeon’s staff. Because everything went smoothly, Ed and I were confident that we had made all the right decisions for Alex.

When we must weigh options for Alex, Ed and I discuss all the potential benefits and problems, and we consider how well we know Alex and how he will likely respond. Along with relying upon our own careful considerations, we rely even more heavily upon prayerful consideration. We know that God has a plan for Alex, and when we aren’t certain what is best for him, God knows. In times when I find myself puzzled as to what choices we should make, I pray for guidance, and we have an amazingly clear sense of what we should do. That Ed and I always reach the same conclusions, guided by our shared devotion to Alex and our shared faith in God, makes moving forward with these choices less daunting.

This week, Alex’s quarterly meeting with his support team convenes, and we will discuss plans for the next three months regarding his services. In preparation, Ed and I have considered various available options, Alex’s progress and his current state, and what we believe will help him most. At this point, we feel that the best way to move him forward is to make no changes because he is doing well with the combination of behavioral, recreational, and music therapies, along with spending one afternoon with his respite care “friend,” and with the various family outings Ed and I plan for him. While others may question our choices, we know that our primary motivation is doing what’s best for Alex, and we also know that God, who loves Alex even more than we do, guides our decisions. As a result, we feel confident in knowing “which would be best.”

“Wise choices will watch over you. Understanding will keep you safe.” Proverbs 2:11

Sunday, November 9, 2014

Healing

 
Last week began in trepidation and ended in celebration. Last evening as the three of us had a snack at one of our favorite restaurants with Alex happily downing fries and orange drink, Ed commented that we never would have guessed that he would be doing so well three days after oral surgery. Despite having eight teeth—four wisdom teeth and four twelve-year molars—removed on Wednesday morning, Alex has been remarkably congenial and energetic. Prior to the surgery, Ed and I thought that, at best, Alex would want to lie in bed for several days to recuperate. Our greater fear, though, was that he would be in such pain that he would be nasty and possibly even aggressive, angry that we had put him through a procedure that made him suffer. However, God watched over us, brought Alex safely through the surgery, and spared Alex and us pain, a true blessing. Moreover, with the removal of those damaged and impacted teeth, we are seeing significant improvements that we never anticipated.

Although Alex has never complained about his back teeth bothering him, his dentist told us in August that he needed to have the upper twelve-year molars removed because they were decayed. When we took him to our dentist for a second opinion, x-rays indicated that his impacted wisdom teeth were damaging the roots of the twelve-year molars. Consequently, our dentist recommended removing all eight of those back teeth at the same time, and he referred us to an experienced oral surgeon, who concurred with that treatment plan. The removal of the twelve-year molars created openings to remove the wisdom teeth, which were totally “bone impacted.” In addition, he felt this oral surgery should be done at an outpatient surgery center with an anesthesiologist putting Alex under general anesthesia. While we felt bad that Alex would have to undergo this procedure, we agreed that it must be done and moved forward to schedule the surgery. As Alex pointed out to me, this was his first surgery, which shows how well God has protected him in his nearly twenty-three years.

After reading through all the possible complications and things that could go wrong during the oral surgery (including pain, bleeding, infection, jaw fracture, permanent numbness, and even death), I signed the consent forms as Alex’s legal health care representative and prayed that none of these potential problems would occur. However, I also remembered my own wisdom teeth removal when I was in my teens as a rather unpleasant experience with pain, swelling, and generally not feeling well for about a week, none of which I shared with Alex, not wanting to incite his anxiety. Because Alex has had positive experiences with doctors and dentists and lab work, he views them as a grand adventure, and this was no different. Even having to get up in the middle of the night, since we had to leave at 4:00 A.M to register at 4:30 A.M. for his 5:30 A.M. surgery, didn’t faze him. He simply told me to wake him up at 3:30 A.M. by reminding him, “It’s twelve hours to Jeopardy!” When I fulfilled his request, he rolled over, gave me a sleepy grin, and awakened without any complaints. We were off to a good start.

In the pre-operation room, two sweet nurses helped us prepare him for surgery and even let him weigh himself when he asked if they had a scale. When he had an IV inserted, he calmly handled the procedure and watched as the nurse put the IV in place. When she injected medication to numb his hand—the worst part of the process, she warned him—he began to wince, and I told him to pretend he was blowing out birthday candles, a trick I learned along the way to distract him and ease pain. He complied, and all was well. The nurse commented that he was an excellent patient, which made us quite proud, but we were even prouder of how calmly Alex was handling himself before surgery.

As Ed and I sat in the waiting room during the hour-long surgery, I alternated between praying and trying to read and distract myself from worrying about Alex. At one point, I looked across the room of the Catholic hospital to see a plaque with a cross that read, “God always keeps his promises.” This reminder comforted me and gave me hope that Alex would, indeed, be safe in God’s hands. I also remembered that many family members and friends were praying for us. Thankfully, Alex came through the surgery beautifully with no complications, and we were glad to find out that Alex was calm both before and after the surgery. When we went to see him in the recovery room, he had gauze stuffed in his mouth and was sleepy, but his coloring looked quite good, and he seemed no worse for the wear. In fact, he kept trying to tell us something. The nurse, who kept commenting on what a sweet boy Alex was, said that he kept repeating some phrase that she couldn’t decipher with all that gauze packed in his mouth. Because of his articulation issues, Alex’s speech isn’t always clear on good days, but the swollen mouth and gauze made understanding him even trickier. The kind nurse, Ed, and I kept trying to figure out what Alex was telling us with no success. Fortunately, he wasn’t upset that we didn’t understand, and when we were wrong in our guesses, he just calmly repeated the mumbled phrase again. Finally, I figured out what he wanted. “Bologna and Thousand Island dressing?” I asked. He nodded and grinned as much as that gauze allowed. After having all those teeth removed, he was thinking about a strange food combination, probably because he was hungry from pre-surgery fasting. I told him we’d have to wait and see how he was feeling before he could eat anything, and that satisfied him.

Once we got home, he seemed remarkably alert and pleasant, even though he had been awakened in the middle of the night, had been under anesthesia, and was given medicine to numb his jaw. We thought he would sleep most of the day, but he wanted to stay awake and talk to us. Again, the gauze packs muffled his speech, so I made him a chart with the letters of the alphabet, numbers from 0-9, and a happy face and sad face to let us know how he was feeling. His flying fingers quickly spelled out what he wanted to tell us, and it was hard for us to keep up with him. At one point, he noted that his voice was raspy, and I explained that they had put a breathing tube down his throat when he was asleep. He grinned and told me in that raspy voice that he sounded “like Bob Dylan.” Nonetheless, he was chatty all day and never once pointed to the sad face when we asked him how he was doing. We were amazed and grateful he was doing so well and was so cooperative about keeping the ice packs on his cheeks and the gauze packs in his mouth.

While we thought he might be more swollen and less pleasant the following day, he surprised us by looking quite good and acting as though nothing had happened, even though the pain medications had worn off. Although he never complained about feeling bad, we gave him over-the-counter pain medicine to keep him comfortable along with the antibiotics the doctor had prescribed. Apparently, his mouth didn’t bother him too much because his appetite was excellent. Besides looking and acting as though he felt fine, Alex was unusually chatty. Moreover, his speech suddenly seems much better and clearer. Even though Alex never complained about those teeth, maybe they have bothered him for a while and made talking more difficult. Perhaps this surgery that we feared would make him temporarily worse has been the turning point to making him permanently better. Perhaps, this is the beginning of the healing that we have prayed for God to give Alex. After seeing how well Alex has come through a rather difficult procedure, we are thankful that God has spared him pain and that Alex is recovering amazingly well, even better than we could have ever hoped or imagined. Certainly, as I was reminded this week, God keeps his promises.

“Heal me, O Lord, and I will be healed. Rescue me, and I will be rescued. You are the one I praise.” Jeremiah 17:14

Sunday, November 2, 2014

Worthy

 
In previous blog entries, I have mentioned the various roles I play as an autism mom, including teacher, therapist, nurse, pharmacist, administrative assistant, and coach. No matter what role I assume, I have one goal: to make Alex’s life better. As we have been preparing for his upcoming oral surgery this week to remove his twelve-year molars and wisdom teeth, I realize that I have another role in his life. That role is to be his agent, promoting his strengths to those who may be working with him and convincing others that he, indeed, is worthy of their kindness and compassion.

When Alex was little, he had an endearing charm that instantly drew people to him. As he has gotten older, his fully grown body with his long arms and legs has an awkwardness that can be off-putting to those who don’t know him. His difficulties with keeping enough personal space distance can seem threatening because he is so tall. In addition, he can be self-conscious at times, speaking quite softly, as though he knows that his speech can be difficult to understand. Moreover, eye contact still proves difficult for him. As a child, he had less difficulty with eye contact, and when he did look away, it appeared as shyness. As an adult, this lack of eye contact can make him appear aloof or disinterested. In essence, Alex often doesn’t make a good initial impression.

For this reason, I want his appearance to be appealing. Thankfully, he enjoys being groomed and allows me to cut his fingernails, to keep him clean shaven, and to cut and style his hair. His treasured daily baths keep him immaculately clean, and we make sure his teeth are always brushed. Between soap, shampoo, shaving cream, toothpaste, deodorant, moisturizer, and clean clothes, Alex smells good. Also, he trusts me to choose his clothes, and I make sure that he is dressed neatly and stylishly. Moreover, when Alex is in public, Ed often reminds him to put his hands at his sides or to pick up his head so that he doesn’t call negative attention to himself as he walks along. Although we love Alex just as he is, quirks and all, we know that the world may not be as accepting as we are. Therefore, we want him to look his best and do everything we can to help him with his appearance because he can’t do it himself, and frankly, he doesn’t really care.

When we have our quarterly meetings with Alex’s “team”—his case manager, behavioral therapist, music therapist, and representative from the agency that provides respite care—Ed frequently takes on the role of proud dad, telling Alex’s accomplishments and letting everyone know how smart and clever Alex truly is. When a child has a disability, discussion often revolves around the weaknesses and what that child can’t do, but we also want others to know our child’s strengths. Fortunately, those who work with Alex soon discover those strengths and can see through the obstacles to the lovable and smart young man he really is. However, Ed and I  must “sell” those strengths until Alex can display them himself.

The process of getting Alex’s oral surgery arranged has required several phone calls and appointments, where Alex has met and interacted with new people. After Alex’s dentist recommended having teeth extracted, we took him to our dentist for a second opinion, where Alex had a panoramic x-ray and examination and cooperated with the dentist and assistant nicely. He also did well with the oral surgeon and his assistant for the consultation appointment. Last week, he had a physical exam with a new doctor, along with blood tests, a chest x-ray, and an EKG, which went smoothly. This week, I spoke with a nurse at the outpatient surgical center where he will have the teeth removed. In each of these experiences, Ed and I found ourselves introducing Alex by putting the autism out there first and then promoting Alex’s strengths. “He has autism, but he loves coming to the dentist.” “He has autism, but he’s always very good about having blood tests.” “Other than autism, he’s very healthy and normal.” “He has autism but is usually very cooperative. We will help you any way we can to make this easier.” Essentially, we don’t want anyone to dismiss Alex as less than he is because he has autism. We have seen him rise to the occasion, and thankfully, he rarely disappoints us in those situations where we need him to comply. Hopefully, he may even change some people’s stereotypes of autism as they remember a nice young man whose parents said he would do well, and he did.

In Jeremiah 18, an allegory is told in which the prophet is told to go to the potter’s house. “So I went down to the potter’s house, and I saw him working at the wheel. But the pot he was shaping from the clay was marred in his hands; so the potter formed it into another pot, shaping it as seemed best to him.” (Jeremiah 18:3-4 NIV) In this symbolic story, the potter is God who can take the marred and make it good and useful. Despite the marring that autism causes, God has created Alex with strengths that can overcome the weaknesses. As his parents, we want others to recognize how much he has to offer, and we gladly push aside the obvious hindrance so that others can realize all the good that lies underneath.
“But you are not like that, for you are a chosen people. You are royal priests, a holy nation, God’s very own possession. As a result, you can show others the goodness of God, for He called you out of the darkness into His wonderful light.” I Peter 2:9

Sunday, October 26, 2014

Fearless


Recently Ed complimented me in a way that totally surprised me by telling me how brave he thinks I am. At first, I thought he was teasing me, as he often likes to do, but he sincerely assured me that he was completely serious. Because I see myself as quite cowardly, this comment took me off guard. I think of myself as the little kindergarten girl who for a month clutched a map my mom had made of the route between home and school, terrified that I would get lost. Driving on highways makes me terribly nervous, and the thought of driving out of town makes me sick to my stomach. Before any new situation, I repeatedly mentally rehearse what I will say and do, for fear of making a fool of myself. If he thinks I’m brave, I must put on a good fa├žade.

This week, we had to take Alex for a physical examination to gain medical clearance for his upcoming oral surgery to remove his twelve-year molars and wisdom teeth under general anesthesia. Because his regular family doctor is now only available limited hours, I decided to take him to another doctor. After rehearsing this scenario in my mind several times, we took Alex to the new physician on Friday. We were quite impressed with the doctor, her staff, and her office, and we were pleased we didn’t have to wait long. However, Alex decided he was not happy to be there and made his displeasure known. First, he waved “the claw,” his right wrist bent at a ninety-degree angle and waved up and down in a dismissive gesture while making a face as though he’d been sucking lemons. Then he decided to stomp his foot on the step of the examination table to get our attention as the doctor and I went over his medical history. Realizing we were ignoring his hand waving and foot stomping, he escalated to swinging his hands and feet. He would not be ignored.

Thankfully, Ed was there to handle Alex, who was acting more like a two-year-old than a twenty-two-year-old, distracting him and trying to keep him calm so that I could convey information to the doctor. Finally, as Alex became more agitated, I apologized to the kind and understanding doctor and asked her to give us about five minutes alone to settle down Alex. Once she left the room, Ed and I went into teamwork mode, with Ed cajoling and coaxing while I instructed him to use the calm down skills he has learned in therapy. With his requested reward of going to Pet Supplies Plus hanging in the balance and a few minutes of reassurance that we were almost done, Alex pulled himself together and was able to complete the physical exam without further incident. However, we knew that we had another step ahead of us before he could receive medical clearance: tests.

Knowing that Alex is much more pleasant in the evening, we decided to take him for his tests after he’d eaten dinner and had his beloved nightly bath. Fortunately, the lab where we needed to take him has evening hours, so we knew this was probably the best scenario to get the testing done. On Friday evening, we discovered that Alex was the only patient, which was ideal because he didn’t have to wait. As usual, he handled the blood draw beautifully, never even flinching and watching in fascination as his blood was drawn into test tubes. The friendly lab technician even commented that he was “a perfect patient.” After that, he needed to have an EKG and chest x-rays, something he had never done before. Uncertain as to how he would do with having to be very still, we were a little nervous about how long these tests could take. However, the x-ray technician was wonderful with him and able to get him to cooperate fully so that the tests went very smoothly. Moreover, Alex apparently had a great time and found the tests interesting. Not only were we pleased with the outstanding and efficient staff at the lab, but we were also delighted that Alex had been so pleasant and cooperative. After dealing with Mr. Hyde at the doctor’s appointment, we were thankful to take Dr. Jekyll to the lab.

Even though we weren’t happy with Alex’s behavior at the doctor and were a little apprehensive about how he would react to the tests, we weren’t afraid. I think we have been through enough difficult situations with him to know that somehow we pull together and pull through to get things done. Ed and I each know our roles in those circumstances: he handles Alex while I handle the paperwork and medical staff, each of us playing to our strengths. Most of all, we support each other so that we can help Alex be healthy, happy, and safe. Part of this fearlessness comes from the faith we have learned in the tough times; we know that God has always seen us through every situation. In fact, one of the things I like best about the facility where we took Alex for the doctor’s appointment and lab tests is that because of its affiliation with the Catholic church, the abundance of Bibles and religious symbols reminded us of God’s presence.

Moreover, as I watched Ed calmly interacting with Alex, especially when Alex was agitated, I realized that his fearlessness has inspired me to be brave. Whether it’s because he grew up in New York City or because he has a few years of life experience on me or because he just doesn’t naturally fret the way I do, I can attribute any bravery I have to what I’ve learned from living with Ed. Today we celebrate Ed’s birthday, and every day I thank God that he is Alex’s dad. I’m sure our life is not what he imagined when he thought of what fatherhood would be like, but being an autism dad has made him rise to the occasion, to be braver and stronger and more patient and more compassionate. Because of his quiet strength and unconditional love, Alex and I are blessed, and the three of us make quite a team, pressing forward fearlessly, ready for the next adventure.

“So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.” Isaiah 41:10

Sunday, October 19, 2014

Broccoli: A New Hope for Autism?

 
This week, the media reported some intriguing research that offers a potential new treatment for autism. As I have mentioned in previous blog entries, I follow autism research closely, hoping to find something that will help and possibly cure Alex. While these new methods of treating autism don’t always turn out to have the potential initially promised, I keep searching for the one that will, indeed, heal Alex. Whenever research from credible sources appears, I find myself especially missing Alex’s childhood doctor who passed away a few years ago. Whenever I would share research and ask her opinion, we would enthusiastically discuss the possibilities, and she would share her medical training to help me fully understand the biochemical mechanisms. Most often, she would finally proclaim, “Well, it’s worth a try because it’s certainly not going to hurt him.”

This new research, published this month in the journal Proceedings of the National Academy of Sciences, suggests a somewhat surprising source of hope: broccoli. More specifically, a chemical found in broccoli sprouts known as sulforaphane may help improve conditions often associated with autism. The authors of the study, Dr. Paul Talalay, professor of pharmacology and molecular science at The Johns Hopkins University, and Dr. Andrew Zimmerman, professor of pediatric neurology at University of Massachusetts Medical Center, studied forty males with autism aged 13-27 for 18 weeks. Some were given pills containing sulforaphane, while others were given a placebo. [To read more about this research, please click here.]

Most of those who were given sulforaphane showed improvements in behavior, such as less irritability, fewer repetitive movements, and fewer problems with communication and motivation. These positive changes were evident to the families, friends, and medical staff, as parents described their sons as “calmer and more socially interactive.” The staff described them as, “much or very much improved,” and researchers noted their improved eye contact and willingness to shake hands, which were not evident when the study began. As Dr. Zimmerman stated, “This is by no means a ‘cure,’ but sulforaphane may ameliorate symptoms of autism.” Unfortunately, one third of the males did not show improvement, and even those who had shown improvement lost those gains when they stopped taking sulforaphane. In the placebo group, only 9% showed improvement in behavior, and none showed any improvement in their social and communication skills.

Why might this chemical found in broccoli help those with autism? Dr. Talalay explains, “We believe that this may be preliminary evidence for the first treatment for autism that improves symptoms by apparently correcting the underlying cellular problems.” Research has shown that people with autism often have biochemical abnormalities in their cells, such as oxidative stress, which can lead to inflammation and DNA damage. Sulforaphane may help improve the body’s own defense against oxidative stress, decreasing problems caused by inflammation. Another theory is that sulforaphane helps strengthen the “heat-shock response” that protects cells during high temperatures, triggering the same response in cells that fever does. Many parents of children with autism report that their children improve when they run fevers, and we have seen this phenomenon in Alex the few times he has run fevers. Essentially, this chemical found in broccoli may treat the cellular problems found in autism, eventually improving the symptoms of autism. Of course, since autism probably has various causes, some with autism will likely not respond to this treatment, as evidenced by those in the study who did not show improvements. As the researchers note, further studies need to be done.

The authors of the study caution that simply eating broccoli is not enough to bring positive changes. They note that the amount of sulforaphane can vary in different types of broccoli, and the ability to obtain this chemical from the vegetable can also vary, depending upon the person’s ability to digest it properly. In addition, this chemical is sensitive to heat; therefore, cooking can lessen its potency. Therefore, the best way to obtain sulforaphane is through supplements, and the amounts must be adjusted to the patient’s weight. Specifically, in their study, 9-27 milligrams per day were given.

Quite excited about this research, I wished that I could have discussed it with Alex’s former doctor. I decided to order a sulforaphane supplement to try with him since it was inexpensive and probably wouldn’t hurt him. However, I also decided to do more research on this supplement before actually giving it to him. One possible side effect of this antioxidant and anti-inflammatory compound is that it may affect how quickly the liver breaks down some medications. Because Alex is on a variety of medications, I need to make sure that taking the supplement will not increase or decrease the effectiveness of his medications. Also, another study showed that sulforaphane has the potential to be a blood thinner because it may prevent blood platelets from clumping together. Since Alex is having oral surgery to remove his wisdom teeth in a few weeks, I don’t want to risk his having any bleeding complications from the surgery. Consequently, even though I’m anxious to see how he may respond to sulforaphane, I have decided to wait a little while to try it with him. However, if and when the time is right, I will be praying that this simple solution may be an answer to prayers, a hope for the cure we and many other parents of children with autism have sought for so long.

“I have given them to you for food, just as I have given you grain and vegetables.” Genesis 9:3

Sunday, October 12, 2014

Lessons Learned

 
This week, People magazine’s fortieth anniversary issue included a feature entitled “Advice to My Younger Self” in which they asked celebrities “what life lessons they wish they had known when they were just starting out.” As I read the responses, I found some to be rather superficial, perhaps offered in jest, wishing they’d reconsidered hairstyles or wearing sunscreen. Others seemed to focus upon ignoring hurtful criticism, and some insisted that they wouldn’t try to give their younger selves advice. A few showed good insight into life and what they had learned from experience, such as actress Jennifer Aniston, who was quoted as saying, “I would just say, ‘You’re doing exactly what you’re supposed to be doing. Just keep doing it. It gets better.’” Looking back on my experience as an autism mom, I think I would agree with her advice. I would also share a few more lessons that I have learned to save my younger self some worry, and maybe they could help other parents new to this journey with autism, as well.

Lose the guilt. After Alex was diagnosed with autism, I worried that somehow I was to blame. Was it something I did when I was pregnant with him? Was it something I didn’t do? Even though I followed my doctors’ advice to the letter during my high-risk pregnancy and have always lived a clean life, I blamed myself. To atone for my self-perceived sins, I threw myself wholeheartedly in trying to find ways to make him better. When progress was slow, I felt guilty that I was somehow doing something wrong. Over the years, I’ve realized that shouldering needless blame is tiring and pointless. God doesn’t want me to feel guilty, and I need to stop feeling as though things that go wrong are my fault.

“Stop assuming my guilt, for I have done no wrong.” Job 6:29

Be patient. One of my flaws is that I have little patience for waiting. However, raising a child with autism has made me learn patience because so many skills take longer to master than they do with typical children. At times, I thought Alex would never sleep through the night, would never use the toilet independently, would never be able to have a conversation, and many other things I wrote off as impossible for him. Over time, he conquered the obstacles on his timetable and on his terms. Now, whenever I become impatient waiting for him to learn new tasks, I must remember his past accomplishments and know that God is not finished with him or, for that matter, with me.

“Patient endurance is what you need now, so that you will continue to do God’s will. Then you will receive all that He has promised.” Hebrews 10:36

Change is good. Although I’m a person who prefers to exist in a comfortable rut, I have learned that the changes I dread often turn out to be for our good in the long run. Over the years, we have had various professionals who work with Alex come and go, and I have mourned the loss of these people. Even though they were wonderful, God has sent us others to replace them who meet our current needs instead of our former ones. As some of these people who had been so important in our lives have moved away, seemingly closing doors, others moved into our lives and brought new approaches Alex needed. For example, I felt great disappointment when Alex’s beloved energetic behavioral therapist took another job. However, her sweet and mellow replacement was exactly what he needed. He has made great progress with her, and we adore her—she is a gift from God.

“For I am about to do something new. See, I have already begun! Do you not see it?” Isaiah 43:19

Choose faith over fear. One of the greatest lessons I have learned over the years is to have faith that things will work out in the end. That faith has come with testing because I tend to fret over everything. However, through experience I have found that many of the things I have worried about never came to pass, and we survived the trying times that did arise by depending upon our faith. Fear paralyzes; faith energizes. When we didn’t know what to do to help Alex, prayer strengthened us and gave us the peace and wisdom we needed to make decisions. While I still struggle with trying not to worry, my faith has grown, and I try to remember to pray before I panic.

“They do not fear bad news; they confidently trust the Lord to care for them.” Psalm 112:7

Look forward. While I worry about what the future holds for Alex, especially when Ed and I aren’t around to take care of him, I know that I need to trust God to take care of him. Moreover, I can look back on the progress he has made and continue to hope that he will eventually overcome all of the obstacles autism has presented. When I become frustrated that his progress seems to be moving more slowly than I’d like or even that he seems to be taking steps backward, I remember that this is only a temporary setback. We keep pressing forward, knowing that he will get better. This hope sustains me when I feel disappointed, frustrated or worried because I look forward to the day when we can look back and celebrate just how far we’ve come, knowing that God was with us every step of the way.

“Yet I am confident I will see the Lord’s goodness while I am here in the land of the living.” Psalm 27:13

Sunday, October 5, 2014

Dog Day

 
Over the years, people have suggested that having a pet dog might be good for Alex. While I’m sure they mean well, they really don’t know how much care Alex actually requires. Having the responsibilities of a pet in addition to taking care of Alex every day seems daunting to me. For example, Alex takes various pills four times a day, and having to remember to give a dog a heartworm pill monthly would be an additional task I'd prefer not to have. After spending years toilet training Alex and cleaning up his accidents on the carpets, I would dread having to housebreak a dog. Furthermore, I’d rather not have to clean carpets after puppy accidents. After dealing with Alex’s sleep difficulties over the years, I now enjoy sleeping peacefully through the night and wouldn’t appreciate being awakened by a pet needing to go out or wanting attention.

Nonetheless, at times, I have idealized notions of a boy and his dog and wonder if having a dog might be beneficial for Alex. After all, one of his favorite places to go is Pet Supplies Plus, where he carefully studies all the different dog foods and is especially fascinated by the bags weighing more than thirty pounds. At these times when my heart wants to rule my head, ever-practical Ed reminds me that Alex never watches where he walks, and he would likely be stepping in dog doo every day. The thought of cleaning the bottom of Alex’s shoes and any places he has walked is always enough to remind me we don’t really need a dog.

This week an unusual situation occurred that gave me a chance to see how Alex would interact with a dog. When his music therapist arrived at our house for his weekly session on Thursday, a cute little dog followed him from his car to our front door. Although I didn’t recognize the dog, it wanted to come in the house with him and cried when we left her outside. Since she wasn’t wearing a collar or tag, we couldn’t identify her owner. Feeling sorry for this scared little pup, I decided to put her on our back screen porch and try to find where she belonged. Any time I left for a moment, she would whimper, so I told Alex to stay with her and talk to her. Half-heartedly, he talked to her, but he had no real interest in her, even when I assured him that she was a nice dog. Fortunately, through a neighborhood online group, we were able to return her within a couple of hours to her very relieved and happy owner.

This experience once again showed me that getting a dog for Alex would not be a good idea. If he didn’t respond to this adorable, well-behaved dog, he would not be likely to warm up to any dog. Moreover, I wouldn’t want to take the risk of getting a dog that would not be as nice as our temporary visitor. Alex wouldn’t be willing or able to take on the responsibilities of feeding, walking, and grooming a dog by himself, and I’m not eager to take on those tasks myself. While I had thought that my motives for not wanting a dog were somewhat selfish, I realized that Alex really has no interest in having a pet, so there is no point to getting him one.

Essentially, Alex only wants to relate to those who can do something for him. If we could find a dog that would prepare food for him, drive him to Pet Supplies Plus, put Epsom salts in his bath, and find the belongings he has misplaced, he might be more enthusiastic about having a dog. In the meantime, doing all those things for Alex keeps me busy enough that I don’t need a pet that requires my care, as well. Now, if we could find that magical dog that could serve as Alex’s chef, chauffeur, valet, and concierge, I could be persuaded to reconsider. In the meantime, we’ll just enjoy other people’s dogs for short periods of time and continue to browse Pet Supplies Plus without ever buying anything.

“With My great strength and powerful arm, I made the earth and all its people and every animal. I can give these things of Mine to anyone I choose.” Jeremiah 27:5

Sunday, September 28, 2014

Shine

 
This week, I happened to run across a blog entry written by a woman who works with children who have autism, and her words made me reflect upon what makes Alex truly special. In her blog entry “Where Does Your Child’s Soul Shine?” Tali Bergman notes, “Sometimes in our desire to teach a child skills, we end up focusing on all the areas that are most challenging for that child, and what can begin to happen is that a child’s natural delight and enthusiasm in the world (i.e. his shiny soul) can begin to slip away or dim.” She goes on to comment, “But the truth is, it is this shiny soul that will drive all meaningful learning and growth for your child. It is this shiny soul that your child was meant to bring to this world.” Finally, she leaves the reader with an important question, also the title of her blog post: “Where does your child’s soul shine?”

As I reflected upon her words, I realized that so much of what I do as an autism mom is trying to fix what is broken. I try to make sure Alex gets all the proper therapies so that he can overcome the communication and social skill obstacles autism has put in his path. In addition, I constantly seek the best medical care for him so that he can be as healthy as possible and avoid any ailments that may cause him pain. In addition, Ed and I engage him in activities that keep his mind sharp and push him to engage in the outside world that can easily overwhelm him. Most of all, we never give up hope that Alex will get better, and we continually encourage him to make progress in both small and big ways.

For several years, we kept Alex mostly hidden away from the world, not because we were ashamed of him, but because we knew that taking him out places meant too many unpredictable stimuli that could upset him, and we didn’t want other people bothered by having to witness potential outbursts that could arise. We were protecting Alex from the world and the world from Alex. With the encouragement of Alex’s therapists, however, we have realized that he needs to be out and among other people so that he can learn to interact with others and to deal with various sensory issues appropriately. To help him, we have worked with his therapists to teach him social skills and coping skills so that he knows how to behave in public and how to calm himself when he becomes overwhelmed. To be honest, we have been pleasantly surprised how well Alex has handled a variety of situations that we feared would overwhelm and upset him. Instead, he finds joy. While we thought we were doing the right thing to keep him in situations that were safe and predictable, we now understand that he needs to be around other people. We focused our work on controlling his behaviors, but never trusted him enough to allow him freedom to practice the skills we were teaching. In a sense, we were keeping Alex’s light under a bushel.

For what I now understand is that what makes Alex’s soul shine, what he was meant to bring to this world, is his joy to share with others. When he orders his food in a restaurant, he is met with patience and kindness, even though he has some trouble telling what he wants. When we cue him to thank people who have done something nice for him, he is rewarded with warm acknowledgements. When Alex smiles, showing his delight in everything, other people see that irrepressible joy and smile back at him. One of the most delightful sounds I know is to hear one of Alex’s therapists laughing with him, knowing that he has amused them with some funny comment and brought them joy. Even better is to have them tell me how much they enjoy working with him, how they look forward to seeing him every week, or simply, as one told me last week, “He’s awesome!”

One of the often-cited characteristics of autism is the inability or unwillingness to share observations and experiences, which may be a communication and/or social skills issue. Recently, we have seen tremendous gains in this area with Alex, who frequently and gleefully comes running to tell us something he’s seen on television, something he’s read on the Internet or in a book, or something he just remembered. His enthusiasm is contagious as he excitedly shares this information, his face and voice expressing joy not only in finding that tidbit of news but also in knowing how happy we are that he wants to tell us. Instead of keeping things to himself, he wants to include others in his happiness.

While we don’t know what the future holds for Alex—although we pray that healing will allow more possibilities to arise for him—we feel assured that God knows what Alex’s purpose in life will be. In the meantime, we do know that what makes Alex shine is his joyful approach to life. Little things can make him happy, and he wants to share that joy with others. Frankly, I can’t think of a better purpose to have in life.

"Those who are wise will shine as bright as the sky, and those who lead many to righteousness will shine like the stars forever." Daniel 12:3

Sunday, September 21, 2014

Protecting Our Children

 
Protecting our children proves one of the most important and difficult challenges all parents face. When those children remain childlike even into adulthood, as many children with autism do, that obligation continues and often becomes even more difficult. Three recent news stories sadly reveal how vigilant autism parents must be in protecting their older children who cannot safely navigate society on their own.

This week, in a town near where I live, a sixteen-year-old boy and a twenty-year-old man were taken into custody for attacking a seventeen-year-old boy with autism, hitting him in the face and back of the head. Apparently someone videotaped this incident, and police were able to view this video. The victim told police that he didn’t understand why the two young men hit him, and his parents reported that he is autistic and non-confrontational. According to the twenty-year-old attacker, they were “just playing” and “didn’t hit [the victim] hard.” [To read this news report, please click here.]The flimsy excuses and lack of remorse offered by these bullies who preyed upon a disabled teenager is disturbing. Moreover, parents of older children with autism need to be aware of potential dangers, including cruel people who would victimize our children for fun, because our children can be oblivious to situations where they could be harmed.

In a similar recent incident, a fifteen-year-old boy with autism was the victim of a so-called prank orchestrated by his peers in suburban Cleveland, Ohio. Telling him that he was participating in the widely known ALS ice-bucket challenge, they instead dumped a bucket of urine and tobacco on his head and posted a video of this disgusting act online. After his parents saw this video, they contacted police, who investigated the matter, which gained national attention and outrage. Notably, comedian Drew Carey offered a $10,000 reward for information leading to the identification of those involved in perpetrating this cruel trick. After detectives investigated the case, they identified five teenagers, aged 14-17, who were involved. Prosecutors are currently reviewing the case to determine what charges may be filed. [To read an account of this incident, please click here.] Claiming that this was just a joke, these teenagers also seem to lack an understanding of how wrong it is to victimize a teenager with autism and then post the incident online for others to see. Again, parents of teenagers with autism must know who their children’s "friends" are and protect them from those who would humiliate and harm them.

Besides protecting our children from peers who would harm teens and young adults with autism for their own cruel entertainment, autism parents must also be vigilant against a surprising source of potential danger to our children. This week in Flemington, New Jersey, twenty-two-year-old Tyler Loftus, who has autism, bipolar disorder, and the mental capacity of a five-year-old, was arraigned in court for making “terroristic threats” and  for “unlawful possession of a weapon,” a three-inch pocket knife. Instead of teenagers who would get pleasure at the expense of a person with autism, Tyler Loftus is the victim of a failed system that should be protecting him.

After spending seven years at Woods School in Pennsylvania, where his developmental disability and mental health needs were addressed successfully, the Return Home New Jersey program forced him to obtain services in New Jersey, placing him in a group home, where his severe needs were not met, despite his mother strongly advocating for him. According to her, the past year and a half, he has had difficulties with the clients and staff at the group home because his mental health needs have been ignored, which leads to nearly daily 911 calls and trips to the local emergency room for assessment. Since the hospital cannot treat him appropriately, they return him to the group home. After allegedly threatening his roommate, he was arrested and placed in jail; this week he was arraigned and faces a court date next month regarding the criminal charges, which he clearly does not understand. [To read an account of this situation, please click here.] Incarcerating this young man with autism who clearly needs psychiatric care strikes me as not only heartbreaking but also as cruel and unusual punishment, and I pray that he gets the help he truly needs.

From our own frustrating and upsetting experience of trying to get help for Alex nearly three years ago, I know how limited resources are when it comes to helping adults with autism. Certainly, young men with autism cannot be allowed to be threats to society, but jail is not the answer to this serious problem. The lack of facilities that know how to treat behavioral and mental health issues related to adult autism is appalling and must be addressed. In the case of Tyler Loftus, he was receiving the proper care he needed, but the state of New Jersey took that support away from him because it was not being provided within their state. As parents of adults with autism, we must make others aware of the injustice our children can face and continue to protect them from those who will do them harm, whether knowingly or unknowingly. Our precious children deserve much better.

“The Lord says, ‘I will rescue those who love Me. I will protect those who trust in My name.’” Psalm 91:14

Sunday, September 14, 2014

Reunion

 
When Alex was first diagnosed with autism, I desperately began searching for information to help him. Along with reading countless articles and books, I spent a great deal of time online, trying to find the most up-to-date research. In addition, I wanted to communicate with other parents who were dealing with the same things we were, hoping that we could share ideas. Thanks to the Internet, people can easily find all kinds of support groups that allow them to connect with others who share their concerns and interests. The first group I joined online was a fairly large autism group with members from all around the world. While I met some very nice and supportive parents in that group, a great deal of arguing and differences of opinion, sometimes known as “flame wars,” led a group of us to break away and start another group.

The second group was specifically for parents of children with hyperlexia, a relatively rare condition where children learn to read before the age of five or six. Most of our kids had begun reading at age three, and many of us used those reading skills to help our children with their speech delays. In addition, most of our kids were younger than those whose parents were in the autism group, so we were dealing with similar developmental issues. From that group, I bonded with a few special moms, and I still keep in contact with them and have always been grateful for their friendship, support, and empathy.

After a few years, a small group from the hyperlexia group formed another sub-group of parents who were doing biomedical interventions with our kids. As we put our kids on gluten-free and casein-free diets to address their food allergies and sensitivities, along with vitamins and nutritional supplements, we wanted to compare notes and share research. Not all parents want to pursue biomedical methods, and we respected those who had chosen not to use those approaches with their kids, taking our conversations elsewhere. I learned a great deal from both groups and appreciated the camaraderie that these smart and dedicated moms offered.

As Alex grew older, I was busier working with him and coordinating his therapies, which meant I had less time for the online support groups. For a while, I “lurked,” reading other people’s comments but rarely commenting myself, and eventually I simply no longer participated at all. Over time, most of us stopped chatting with each other online, busy with our kids and more confident in our abilities to parent these special kids without the support of others who were in the same boat.

Recently, I noticed an email with a familiar designation in my inbox and was surprised yet pleased to hear from one of the members of our small biomedical group. This group had probably not been active for more than five years, and she was curious as to how everyone was doing. Over the next few days, nearly everyone in the group responded with updates about how they and their kids—actually teenagers and young adults since so much time has passed—are doing. Some posted current pictures: their cute little boys I remembered from years ago have now matured into tall and handsome young men. As much as their sons had changed, these moms with their distinct voices had not changed much at all, and the familiarity of their personalities was comforting as I remembered many of our conversations from the past and how we had seen each other through those early, uncertain years.

Over the next several days, my inbox continued to fill with emails from this group, and I found myself feeling overwhelmed by the conversations. Perhaps I should explain that I’m not the type of person who goes to high school reunions. For those who enjoy reminiscing, I think that’s great, but I personally have no desire to bond with acquaintances from many years ago because life has taken me far from those past experiences. One of the topics the group discussed this week as I lurked was the question of  “What would you tell your younger self?” For some, this evoked wistfulness in choices they wish they had made; for others, this gave them a sense of wisdom from what they’ve learned from experience. While I didn’t respond, I suppose that I would have to say that I wouldn’t tell my younger self anything because I believe that everything we go through teaches us something we must learn. Perhaps I would share with my younger self the wise quote that Alex often tells me: “Wait and see.”

While a few of the online support group seem to be continuing their catching up on news and reminiscing, some of us are standing on the fringes, waiting until the reunion is over or until it’s polite to leave. Others have already left, explaining the obligations that keep them from staying any longer. In a few weeks, probably all of us will lose touch once again, maybe to be reunited a few years down the line when someone feels nostalgic and wonders how everyone is doing.

As I have mentioned in a previous blog entry, Alex still says his childhood prayer of “Now I lay me down to sleep,” followed by a list of people whom he asks God to bless every night. This list has increased over time as people who are important to him have entered his life, such as his beloved therapists. About a week ago, out of the blue, he added three names at the end of his “God bless” list. Although I recognized these boys’ names from many years ago, I asked Alex who they were. He smiled and told me that they were in his preschool class. I’m not sure why he suddenly decided to include these three boys, who are now young men, in his prayers, but I’m touched by the sweetness of the gesture. This was not a one-time addition, either, as Alex has continued to name them every night in his blessings list. When I asked Alex how old those three boys are now, he immediately answered, “Twenty-two,” knowing that they are the same age as he is. I wonder how those boys are doing, what they look like as young men, and what a reunion of that special needs preschool class would be like. Mostly, I hope they feel the prayers of their former classmate Alex, who still feels connected to them, even after seventeen years. God bless Alan, David, and Joshua, and God bless Alex, who prays for them all.

“Yet the time will come when the Lord will gather them together like handpicked grain. One by one he will gather them…” Isaiah 27:12

Sunday, September 7, 2014

Like Pulling Teeth

 
A couple of weeks ago, we took Alex to his pediatric dentist who also sees adults with special needs for his regular six-month cleaning and check-up.  As I have mentioned in previous blog entries, Alex has always had good experiences at the dentist, and he eagerly looks forward to going, unlike most people. Moreover, he has been quite fortunate that he hasn’t needed any dental work other than to have two teeth filled under anesthesia last summer when he was twenty-one years old. Although we had thought this appointment would be uneventful, since his check-ups always are, we were wrong.

First of all, Alex looks forward to seeing his beloved hygienist Laura, who shows him great kindness and calls him “Sweetie” in her sultry deep voice that he likes. This time, another hygienist cleaned his teeth instead. Alex’s disappointment was obvious as he asked the new hygienist, “Where’s Laura?” I’m not certain why this change was made, as we saw Laura there that morning, but for some reason she didn’t work on Alex this time. After his teeth were cleaned, the new hygienist went over how Alex’s teeth are doing. Many times, the dentist comes and gives me a report about Alex’s teeth, but lately he seems to be unavailable for these consultations. While I appreciate the good job they have done taking care of Alex’s teeth the past several years, I don’t appreciate that he doesn’t take a few minutes to talk with me. In ways he reminds me of the character of the Wizard of Oz: “Nobody gets in to see the Wizard. Not nobody. Not no how.” Instead, the new hygienist had the task of breaking bad news, which wasn’t fair to her or me.

Since Alex has never had much problem with decay, I was stunned when she told me that his upper back molars needed to be extracted because they are “deteriorating.” I asked her if she meant his wisdom teeth or twelve-year molars, and she seemed a bit rattled by the question. Next I asked her if his wisdom teeth have erupted, which seemed to rattle her even more. She began flipping through his chart, looking for information, even though she had just examined Alex. Then she told me that it was his twelve-year molars that were deteriorating and needed to be removed and that his wisdom teeth had not erupted but were lying sideways. As if to smooth over the situation, she tried to reassure me that nothing needed to be done before we came back for his next check-up in six months. Since things didn’t seem that imminent, I asked her if those teeth could be saved by having them filled, and she flatly told me they were too far gone. Then she told me that if Alex were in a lot of pain or having trouble sleeping, we should call their office to get a referral to an oral surgeon to have them removed right away.

At that point, I was a bit overwhelmed thinking of how nasty Alex could be if he were in so much pain he couldn’t sleep. I simply thanked her, and we took Alex, who was in the waiting room with Ed and oblivious to this discussion, home. In the car, I thought of all the questions I should have asked her and felt frustrated that the dentist had not explained all the issues and had left a new staff person to go over a fairly serious matter. Once I got home and got my thoughts together, I called the office and asked to speak to her to try and address my unanswered questions. Yes, his upper twelve-year molars needed to be removed, but they most likely could wait at least six months. After she had a brief consultation with the “Great and Powerful Wizard of Oz,” the dentist, she said that if we wanted to be proactive, we could consult an oral surgeon and have the teeth removed before they caused him any pain. That sounded like a plan to me.

However, I was not comfortable taking Alex to an oral surgeon we’d never met before I knew more about what was wrong with his teeth. Consequently, I decided to take him to my dentist whom I like and trust. Fortunately, we were able to get an appointment right away, and Alex was enthusiastic about seeing a new dentist. Since Alex’s dentist never x-rays his teeth, I knew that having x-rays could be tricky because he would have to cooperate and sit still. However, the pleasant dental assistant was very good about explaining to Alex what he needed to do, and the panorama x-ray of his entire mouth went amazingly well because Alex did exactly as he was told. I think he found the rotating machine fascinating and liked that the process would take exactly sixteen—not fifteen or twenty—seconds.

After the x-ray was developed, my dentist carefully examined Alex’s teeth on the image and in his mouth. He also showed me in the dental mirror the decay on the back of Alex’s twelve-year molars that was cause for concern. He was quite understanding as he explained that keeping the back of his back molars clean was difficult and that by removing those teeth, we could take better care of the rest of his teeth. For that reason, he thought removing the bottom two back molars might be a good idea, as well. Additionally, he recommended removing Alex’s impacted wisdom teeth at the same time before they cause him any pain or problems. He explained that when his twelve-year molars are removed, that will allow easier access to the wisdom teeth to remove them, as well. He recommended all eight back teeth be removed under IV anesthesia for Alex’s comfort and felt that doing it all at once would be easier on him in the long run.

After addressing that concern, he checked all of the rest of Alex’s teeth and said that they are in good shape. He asked me if Alex brushed his own teeth, and I explained that his fine motor skill weakness makes it difficult for him to do his own oral hygiene. Therefore, I do most of the brushing of his teeth. He then told me that I “deserve a pat on the back” for the good job I’ve done in keeping his teeth clean and healthy. This was a nice recognition no dentist had given me before and made me feel better about the decay in Alex’s back teeth, which he reassured me was difficult to avoid. Although we aren’t thrilled that Alex needs to have eight teeth removed, we appreciated that we now understood why this would be best in the long run, thanks to my dentist’s gentle and compassionate explanation of how this will help Alex.

Also, he agreed with us that we shouldn’t wait until the teeth cause him problems and should proceed with getting them removed instead of waiting six months, as we had been told we could. He then gave us a referral to a local oral surgeon along with Alex’s x-rays and a written explanation of which teeth need extraction. When we got home, I scheduled an appointment with the recommended oral surgeon for a consultation, and we will wait to see what he says then. Since Alex did well last summer when he had teeth filled under anesthesia, we are hopeful that he will do well with having these teeth removed under anesthesia, but we are concerned about how he’ll react to the discomfort afterwards. Alex, on the other hand, has no worries and is looking forward to the process, seeing it as yet another adventure. I suspect he thinks he has a big payoff coming from the Tooth Fairy in the future. If that makes things easier for him, I’m sure she can fulfill his wish.

“Putting confidence in an unreliable person in times of trouble is like chewing with a broken tooth or walking on a lame foot.” Proverbs 25:19

Sunday, August 31, 2014

A Place of Rest

 
Last night I was organizing Alex’s bedroom, a task I had put off all summer, knowing that it would take a great deal of time and patience to sort through all his things. I also knew that I would have to go through all of his possessions when he was busily engaged in something else so that he wouldn’t distract me from sorting his things into three piles: keep, give away, and throw away. In the past, I was rarely able to put his belongings into the latter two piles because he wanted to keep everything that was in his room. To be honest, I had a great fear that if I threw away something of his, he would instinctively know what I had put in the trash and insist that he needed that item immediately. Moreover, I knew that he would be angry with me for having disposed of it. For most children, this might be a forgotten toy; for Alex, this might be an instruction manual for a gadget that had been long gone or a seemingly random list of numbers he had constructed and only he knew their significance. Typically, cleaning Alex’s room meant simply finding places for all his things and never really purging all the extraneous.

Yesterday’s end-of-summer cleaning, however, was different. As I carted out garbage bags full of his former belongings I felt certain he no longer needed, Alex calmly watched me and seemed pleased that his room was taking a more organized form. By removing dilapidated and outdated books, his bookshelves have room for those books he truly treasures, and he can now find them quickly because they are no longer stacked in piles on top of his desk. I did make one consolation in my determined effort to rid his room of mess: knowing his love for his world almanacs, I kept all of them, despite their torn covers and missing pages, and stacked them together on a shelf, which made Alex happy.

When I cleaned out his closet, I noticed something else that showed a clear sign of progress. In the past, Alex refused to wear any clothes that had words or logos on them. In previous blog entries, I have mentioned that he inexplicably referred to these as “bad imagine clothes.” Now, his closet contains sweatshirts with his favorite sports teams emblazoned on the fronts, and many of his newest t-shirts, which he helped select, have words on them. In fact, his current favorite t-shirt is one he found at Kohl’s that depicts some of the characters from Sesame Street, a favorite show from his childhood, with the saying, “Everything I needed to know I learned on the street.” Although I suspect he doesn’t really get the joke, he thinks it’s funny to wear a shirt with Elmo, Big Bird, and Cookie Monster at his age.

Part of my motivation to overhaul Alex’s room came from his recent request to get new bedding. For the past several years, he has preferred solid-colored sheets and a NASCAR comforter. Last week, he suddenly decided that he wanted Major League Baseball themed bedding instead. As he and I shopped online for a new comforter and sheets, he studied his options, and after asking me if one he liked was too expensive (and being reassured that the price was reasonable), he decisively chose the one he liked best. This process also showed signs of progress in that he came up with an idea totally on his own, patiently and carefully weighed his options, and then made a decision without relying upon me to make it for him.

As I finished the dreaded job of tackling his room, I realized that the cleaning of Alex’s room took on symbolic meaning, as well. Throwing away items he had ruined by throwing them or writing on them during his destructive phase was cathartic for me, a way of getting rid of bad memories. Moreover, I realized that fixing up this place where Alex rests comes when we have arrived at our own time of rest after a time of turmoil. No longer do I fear Alex’s wrath for moving or getting rid of his things. The improvements in his behavior along with his progress in making independent decisions and being more flexible about his surroundings and what he wears makes us embrace the positive changes and feel more hopeful about his future. For a time, we lived in constant fear of making Alex mad, and we did everything we could to make him happy. Now we live in peace knowing that he is happy and doesn’t need our constant coddling to make him that way. Whether this positive shift has come with time, therapy, healing, or a combination, we don’t know, but we do know that we are thankful that we can clear away the struggles of the past and enjoy the contentment we find in this blessed time of rest.

“The Lord replied, ‘…I will give you rest—everything will be fine for you.” Exodus 33:14

Sunday, August 24, 2014

Autism News This Week

 
After Alex was diagnosed with autism eighteen years ago, I began researching autism, hoping to find ways to make his life better and easier. Indeed, the information I have gained through my investigating and reading has led us to therapies and methods that have helped him. At the same time, some articles I have read about autism, particularly those about how children with autism have been mistreated, anger me and make me more determined to protect Alex from those who might take advantage of his trusting nature. This week three major stories about autism appeared in the media, and each filled me with different emotions yet confirmed my need to seek more information and to keep working as Alex’s advocate.

The first story came out of Jurupa Valley, California, where parents of special education high school students complained that their children were expected to sort garbage as part of their curriculum. [To read this report, please click here.] As part of a life skills class, special education students had to pick through the school’s trash cans looking for recyclables, reportedly to be sold to make money for the special education program. When a freshman student with autism came home and told his mother about this activity, she immediately complained to the administration and school board. Apparently the superintendent’s response was that sorting garbage was a standard part of the curriculum and that no complaints had been received before last week. Perhaps the lack of complaints was because these children could not communicate to their parents that they were expected to do degrading and disgusting and potentially dangerous work. Once parents found out that garbage picking was part of the special education curriculum, they angrily complained, a school board member whose child also has special needs concurred with their concerns, and the school district apologized. However, instead of cancelling this program, the administration is reviewing it. Maybe the superintendent needs to sort garbage himself so that he can see how wrong it is for special needs children to be forced to do this activity. Teachers, administrators, and therapists who work with special needs children should always ask themselves, “If this were my child, how would I want him/her treated?” I seriously doubt garbage picking is something they would want their children doing as a school-sanctioned activity passed off as a “functional skill.” This type of special education “curriculum” reminds me why we chose to home school Alex.

Another story that raised my ire this week focused upon the admission of a Centers for Disease Control and Prevention research scientist that data was manipulated to dismiss the potential relationship between vaccines and autism. [To read this report, please click here.] This whistleblower, later revealed as Dr. William Thompson, finally admitted that the 2003 CDC report showing no cause between autism and the MMR vaccine was essentially fraudulent. The research at that time actually revealed a much higher rate of autism among African-American boys who received the MMR shot before age three. However, pressure from public health organizations, including the CDC, forced scientists to eliminate data that questioned vaccine safety and potentially indicted vaccines as related to the rise in autism rates. By suppressing this information, more than ten years has been essentially wasted in trying to find causes and cures for autism. By protecting companies that manufacture vaccines, the government health agencies have failed to protect children whose lives have been impacted seriously and negatively by autism, and this is shameful.

Although these articles angered me that people who should know better failed to protect children with special needs, a third report that appeared this week gives me hope for Alex’s future. Widely reported in various media outlets, recently published research indicates a likely cause of autism and a potentially promising treatment. [To read this research, please click here.] Through brain studies done by American neuroscientists, people with autism were found to have more synapses, or connections between nerves, than typical people have. While all humans are born with more synapses than they need, usually these additional synapses are pruned over time. However, in people with autism, the mechanism to get rid of unnecessary synapses somehow fails. While autism may be seen as lacking something; the reality seems to be that autism means having too much, specifically, having too many neural connections, which probably leads to the sensory overload that often characterizes autism.

By using the immunosuppressant drug rapamycin in mice that display autistic behaviors, normal pruning of synapses was restored, and autistic behaviors decreased. While this research seems promising, scientists caution that this drug has side effects and may not work in people as it does in mice. However, researchers seem optimistic that pursuing this problem of too many synapses could lead to development of medications with fewer side effects that would help not only children with autism but also adults with autism, as well. Perhaps one good thing about the current epidemic rate of 1 in 68 children having autism is that drug companies would see profitability in researching and manufacturing these types of medications, knowing that a large population could benefit. Certainly, I’m hopeful that research continues to find ways to heal the parts of the nervous system that autism impairs, and this report fueled my optimism that one day Alex will be cured.

As I have studied and researched autism this week, I have also watched many videos of people, including my friends and family members, taking the ice bucket challenge for ALS, a devastating neurological disorder. While I appreciate their willingness to support ALS awareness by making videos and donations, I wish that people would also wholeheartedly support autism, another devastating neurological disorder, with the same widespread enthusiasm. Instead of dumping ice water over one’s head, perhaps walking over hot coals would be a good challenge to raise autism awareness. I know that many autism parents like me wouldn’t think twice about walking over hot coals or even through fire for our kids to help them. In the meantime, we just keep searching for answers, working to make our children’s lives the best they can be, and praying for a cure I truly believe will come in time.

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