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