Sunday, April 28, 2013

Autism Awareness Month in Review

As Autism Awareness Month comes to a close this week, let’s review what we already know about autism.

1. A lot of kids have autism. Whether the statistics are the accepted 1 in 88 or the more recent 1 in 50 or the suspected even more prevalent numbers of children who have autism, the numbers are increasing rapidly from previous figures of one in hundreds or one in thousands. Moreover, the arguments as to whether the reasons for this startling increase may be better diagnosis or broader definitions of autism or more children actually affected by autism matter less than the reality that many families are dealing with autism.

2.  Despite the large numbers of children diagnosed with autism, research seems to bring us no closer to finding ways to prevent or treat autism. This week, the media reported three research report findings that have questionable usefulness in dealing with autism. One study looked at placentas and suggested that children with autism are born with placentas that have more folds in them than those of typical children, which could be an early marker for autism. However, the study is rather limited, looking only at a fairly small sample of placentas. Also, as Dr. Jonathan L. Hecht, associate professor of pathology at Harvard Medical School, noted, these folds could be the placenta’s way of responding to many kinds of stress, so they may not be specific enough to predict autism. Two other research reports in the news this week discussed developing drugs and vaccines for autism, both of which may be helpful to those currently dealing with autism. However, if drug companies can profit from autism drugs and vaccines, will there be incentive to find ways to prevent autism in the first place?

3. Early intervention is important. Obviously, addressing any issues as soon as they are discovered makes good sense. However, many parents have difficulty getting their children diagnosed early. We suspected that Alex had developmental delays at least a year before he was diagnosed with autism, and we shared our concerns with his pediatrician, who simply reassured us that boys develop more slowly. Would another year of intervention have made a difference? We will never know. Moreover, finding services for children with autism is a difficult task for parents. School districts, overwhelmed with the number of children with disabilities, tend to provide bare minimums when it comes to valuable services, such as speech therapy and occupational therapy. Private therapy is expensive, may not be covered by some insurance, and may not be readily available. Many private providers in our area have long waiting lists because so many children need services. Even if parents know their children have autism and actively seek help for them, they may not be able to get the critical early intervention.

4. Autism awareness is shifting to autism acceptance. Since many people know someone with autism, more people are aware of autism. In an earlier blog entry [March 17, 2013] “Should Autism Be Neither Seen Nor Heard?” I discussed incidents reported in the media where children with autism and their parents were treated badly in public situations. Certainly, people need to be understanding of children who cannot control their behavior at times and sympathetic to parents trying to help their children. This tolerance, however, is not the focus of autism acceptance. Rather, some parents of children with autism and adults with autism want not just understanding but celebrating of autism. This movement known as neurodiversity criticizes parents like us who want to make our children better through biomedical and therapeutic interventions. They claim that autism is part of the personality, and trying to eliminate behaviors is rejecting that child for who he/she is. Indeed, some parents write in their blogs that they don’t want to change a thing about their children with autism. Not surprisingly, I have noticed that these parents typically have very young children, and I wonder if they will feel the same when their children’s behaviors potentially escalate from “unique” to aggressive in adolescence. Nonetheless, those of us who have not accepted autism as a way of life for our children have dug deeper with testing that proves our children have medical issues, such as yeast overgrowth, food allergies, and heavy metal toxicity, that are making them physically ill. Because we love Alex unconditionally, we do not accept that illness is a natural state for him, and we suspect that his behavior is often influenced by how he physically feels. To ignore what the evidence shows would be negligent on our part; therefore, we continue to strive to make him as healthy as he can be. We accept Alex for who he is, but like all parents, we want him to have the best life possible, which is free of the obstacles autism has imposed upon him. Until we are content that he is healthy and happy, we will accept no less for him.

“And may the Lord our God show us his approval and make our efforts successful. Yes, make our efforts successful!” Psalm 90:17

Sunday, April 21, 2013

Level of Care

Earlier this month, we had to complete a level of care needs assessment survey for Alex with the help of his caseworker assigned by the state to manage his disability funds. By answering a series of questions about what he can and cannot do, we provide information used to determine the amounts and kinds of support services he needs. At this point, Ed and I are providing nearly all of these services ourselves, but when Alex eventually goes into supported living, this information will be vital to making sure that his needs are met. While it’s sometimes difficult to admit that Alex can’t do certain basic tasks, we know we must be honest in conveying his needs to be true advocates for him. In the past year, he has made good progress in improving his behavior, but he still needs quite a bit of care on a daily basis. As I explained to Ed’s sister last week when she was here visiting, in many ways, Alex is just a giant toddler.

One of the primary areas of needs assessment is self-care. Because Alex has poor fine motor skills, despite years of occupational therapy, he still needs a great deal of help completing basic daily tasks to take care of himself. Moreover some of the medications he currently takes hinder his motor movements, requiring that we assist him. For example, Alex can undress himself, but he lacks the motor planning skills to dress himself independently. If we place a shirt on top of his head, he can pull it over his head and with some help place his arms in the sleeves. Similarly, he needs us to hold his pants so that he can step into the legs. Since he hasn’t mastered zipping, buttoning, or tying, we have to fasten his clothes for him. For this reason, he usually wears clothes that require no fastening, such as slip-on shoes, t-shirts, and track pants with elastic waistbands.

While we are fortunate that Alex can use the toilet independently and never has accidents, we still have to remind him to close the bathroom door, make sure his pants are pulled up all the way when he’s done, and wash his hands afterward. Another self-care issue requiring our help and supervision is grooming. Alex likes to be clean and neat, but his fine motor skills again hinder him doing things for himself, such as shaving, cutting his nails, combing his hair, etc., so we must do these things for him. Thankfully, he enjoys being groomed, so he is very cooperative when we complete these tasks. In addition, we must supervise his bathing and tooth brushing, as he would only remember to clean small parts of himself, forgetting to wash/brush completely.  Specifically, even though he knows he has 32 teeth, he seems to only want to brush the front eight.

Although Alex can feed himself with a fork and spoon, he hasn’t mastered how to cut his food with a knife, which means we have to prepare most of his food for him. His shaky hands make pouring drinks difficult and spilling them a constant likelihood; therefore, we fix his beverages and put them in cups with lids and straws for him to drink. Besides the crucial feeding assistance, Ed and I must supervise Alex’s various medications that he takes throughout the day. While he is cooperative about taking the medicine, he is not capable of following the dosing schedule, and he needs for one of us to place the pills on his tongue so that he can swallow them. However, we are thankful that he can swallow pills, especially since he has to take so many of them every day.

Another area of needs assessment involves self-direction, such as planning. Since Alex’s verbal skills are limited, and his handwriting is nearly illegible, he relies upon me to make phone calls regarding his disability services, doctor appointments, prescription refills, and therapy session, as well as to fill out needed forms for him. As his “personal assistant,” I coordinate all of these important tasks for him and am thankful I’m organized enough to keep all of his appointments straight. The state has also appointed me as his authorized representative to oversee his disability benefits and keep track of money spent for his needs. In addition to contacting various professionals who help Alex, we must also provide transportation since Alex can’t drive or ride a bicycle. Moreover, his lack of judgment when it comes to safety issues means that we still have our childproof locks engaged on the back doors of our cars so that he can’t suddenly open them.  Also, we don’t trust him to walk alone because he is seemingly oblivious to traffic and could easily get hit by a car if he weren’t paying attention.

Alex has other safety concerns, as well, that we must address. To prevent him from getting into things that could hurt him, we have childproof covers on our basement and garage doorknobs so that he cannot go into those places without our supervision. In addition, we still have some of our cabinets secured to prevent him from getting into potentially dangerous things. Because he called 911 a few times to see what would happen when he was younger, we have hidden our phones so that he cannot call in false alarms. In addition, we have hidden away in boxes most of our breakable knick-knacks after he went through a phase where he would throw things to get attention. Similarly, we keep our bedroom door locked at all times because in the past Alex had an annoying habit of dumping my jewelry box onto the floor, making a mess. Although he is probably past that destructive stage, we have not tempted fate. Once again, we have had to make our house toddler-proof, or in this case, Alex-proof.

As we look toward the future, we anticipate that Alex will continue to make good progress with his behavior so that we can trust him more and gradually ease restrictions around the house. We also hope that his motor skills will improve so that he can do more tasks independently and safely. Until he is ready to do things for himself, however, Ed and I will continue to walk a step behind him, making sure that all his needs are met.

“Care for the flock that God has entrusted to you. Watch over it willingly, not grudgingly--not for what you will get out of it, but because you are eager to serve God.”  I Peter 5:2

Sunday, April 14, 2013

Nice to Meet You. How Many Teeth Do You Have?

This past week was an interesting one for Alex because he had an opportunity to meet two new people and visit with three more that he hadn’t seen in a while. Although a stereotype of autism is difficulty in adjusting to new situations, Alex loves meeting new people because he can ask them his somewhat offbeat questions as he tries to get to know them better, or at least so that he can mentally quantify them in his mathematical mind. When most people meet someone for the first time, they ask about the other one’s occupation, family, hobbies and interests, etc. However, Alex only really wants to know things that can be answered with a number. In many ways he reminds me of a quote from one of my favorite books The Little Prince in which the narrator criticizes adults for their fascination with numbers, stating, “Grown-ups love figures. When you tell them that you have made a new friend, they never ask you any questions about essential matters…Instead, they demand: ‘How old is he? How many brothers has he? How much does he weigh? How much money does his father make?’ Only from these figures do they think they have learned anything about him.” Indeed, Alex must truly be a grown-up because he sees nothing wrong with any of these questions, and if we hadn’t warned him repeatedly about not asking adults their age, weight, and salary figures, he would boldly ask for this personal information.

On Monday, he met his new behavioral therapist, who will replace his current behavioral therapist who is moving out of state. His current therapist, Melissa, has been very good to prepare him for the change and allowed him to ask questions to ease any concerns he might have. To make the transition smoother, the two therapists will both see Alex for a couple of sessions so that the new one can observe the therapy session routines and so that Alex can be with a familiar person as he gets to know the new one. When I first met his new therapist last week, I knew right away that Alex would take to her instantly because she has a pleasant voice, something he values greatly. After Melissa introduced the new therapist to Alex, she asked him if he’d like to ask her any questions. He turned to me, knowing full well my answer would be no, and inquired if he could ask her age and weight. I reminded him that we don’t ask adults those questions and suggested that he try again.

Undaunted, he asked her how tall she is, and she told him that she was very short at 5’1”, and I could see him mentally putting the four of us in a lineup of her at the shortest, me next at 5’3”, then Melissa at 5’6”, and himself the tallest at 6’0. This made him smile. Next, Melissa explained to the new therapist about Alex’s system of ranking people’s voices, an imagined range he calls “dropodos,” and asked Alex to tell each of us what our dropodos level was. In line with our heights, from shortest to tallest, each of us was assigned a number corresponding to his perception of how deep and strong our voices are. Alex was further fascinated by his new therapist’s voice because, as a native of Turkey, she has a slight accent, something he finds desirable in people, perhaps because he has grown up listening to the Brooklyn accents of my husband and his family and the Southern accents of my family.

After Alex had noted her height and voice, I knew what his next [odd] question would be. “How many teeth does she have?” I’m not certain why Alex needs to know this information, but I suppose this numerical value is just another way to classify people and perhaps measure their ages since he knows children have fewer teeth than adults do. Also, Alex has always enjoyed going to the dentist, and he may associate thinking about teeth as a pleasant experience. Nonetheless, he was delighted that his new therapist had an intriguing answer for him. Like him, she currently has all 32 of her teeth, but she explained that in June she will have either two or four of her wisdom teeth removed. Unfazed by his unusual question, she told him that she can tell him more about it in a couple of months, when she will be able to update him with a new tooth count. This answer delighted him so much he shuddered with joy. Consequently, their first meeting was a success because Alex found all of her answers to be satisfactory.

On Thursday, Alex had a surprise visit from Ed’s family, who flew in to Chicago to see my nephew’s graduation from Navy boot camp this weekend and stopped by to see us, as well. Knowing that he would repeatedly ask us when they would arrive, we didn’t tell him they were coming beforehand. Handling the surprise amazingly well, he was just happy to have people that he could ask his series of questions. Because Ed’s sister and her husband had been here a couple of years ago, he remembered them, but he had new people to interview in Ed’s younger sister, whom Alex hadn’t seen in many years, and in my nephew’s girlfriend, whom we had not met before. Since Alex knows everyone’s birthdate in the family, he didn’t need to ask his aunts or uncles their ages, and I cut him off before he could ask my nephew’s girlfriend. I could see the wheels turning in his mind that he really wanted to ask how much everyone weighed, but wisely chose instead to ask them their heights. He found it interesting that his two aunts and I are all exactly the same height, but he seemed more pleased to have discovered that his uncle is taller than he is.

After lunch, Alex decided to resume his questioning by asking his aunt how many teeth she has, and she kindly obliged him by actually sitting there and counting them aloud for him. This thrilled him, as he again happily shuddered because someone was taking his question seriously. She went on to explain that while her son was in boot camp, they removed all of his wisdom teeth, so he had gone from 32 to 28 teeth recently, which Alex also found interesting.

We’re pleased that Alex has an inquisitive mind and enjoys meeting people, and we appreciate those who seem to understand his need to ask somewhat unusual questions to get to know them. I guess one good thing about Alex’s gift for numbers and excellent memory is that he would make a good witness: he could easily tell a person’s height, describe the person’s voice, and detail their dental records. Fortunately, he will likely never need to share that information, but that knowledge allows him to remember the people he’s met, using the parameters that have meaning and value for him.

“Cry out for insight, and ask for understanding.” Proverbs 2:3

Sunday, April 7, 2013

A Week in the Life with Autism

This past week began Autism Awareness Month, and many people whose lives have been touched by autism have used this time to make others more cognizant of this epidemic. For parents of children with autism, awareness involves more than wearing the distinctive autism puzzle-piece logo or lighting blue lights. Autism awareness is a way of life for us. Yesterday I read an excellent blog entry written by an autism mom who detailed a typical day in the life of her family. [To read this article, click here.] Impressed by her devotion and her willingness to share what her life is really like, I decided to try and do the same. However, I got bogged down thinking about how much time we spend giving Alex pills and fixing food for him throughout the day, as well as helping him with tasks he cannot complete on his own. Instead of providing an hourly report as she did, I decided to write about the highlights of our past week so that others can see that having a child with autism—even an adult child, like Alex—entails planning, coordinating, and supervising in ways different from those of parents of typical children. With that in mind, here is a glimpse of last week with the Byrnes.

Saturday—We had a 10:00 appointment with Alex’s new doctor, who wanted to see him a month after his last visit to see how he was progressing with the supplements he had recommended. After I explained how we had gradually phased in vitamin D, gentian violet, probiotic with prebiotic, and vitamin C over the past few weeks, the doctor carefully examined Alex. Fortunately, the yeast overgrowth in and around Alex’s mouth has improved, but he still has some thrush and cheilitis. The doctor suggested increasing the doses of vitamin C and probiotic/prebiotic and gave us a prescription for the antifungal drug Diflucan. He also noted the acne on Alex’s face and recommended a progesterone cream to decrease the inflammation and prevent secondary infection. We were once again impressed with this young doctor’s enthusiasm about making Alex healthier and his compassionate manner.

Sunday—Alex seemed pleased with the contents of his Easter basket. Since he is on strict gluten-free and milk-free diet, we always have to be creative when it comes to treats for him. Fortunately, he is a fan of Kraft Bunny Mallows marshmallow bunnies, jelly beans, and marshmallow Peeps (specifically the blue bunnies), all of which are allowed on his diet. In addition, I found him some nice paperback books in the children’s nonfiction section of Barnes and Noble on some of his favorite topics: the sun, the moon, the earth, thunderstorms, and earthquakes. While I was at the bookstore, I also found a small "computer sitter" figure of Sheldon from The Big Bang Theory, which is one of his favorite television shows, and a street map of towns in Northwest Indiana, where we live. Of course, the last thing I grabbed—the street map—was his favorite gift.

Monday—I received a letter in the mail that elevated my blood pressure from Indiana Medicaid, who provides disability services for Alex. In a previous blog entry, I explained that they had sent us a letter in January threatening to cancel Alex’s benefits because they alleged that I had “failed” to send them his financial records. After several calls to them, they discovered that they had received the information I had sent in a timely fashion, but someone had forgotten to note that in his file. Fortunately, my organization skills and tenacity prevented his benefits from being cancelled. The letter I received this week stated that they had sent us a letter in January indicating his benefits were to be cancelled, and a class action lawsuit had been filed against them because they had failed to notify people properly. Because the letter was not clearly written, I had to read it a few times before realizing that they hadn’t actually cancelled his benefits, which made sense because they have been paying for services for him the past few months. However, to be certain, I logged onto their website, looked up Alex’s files, and discovered that he was still covered. While I was relieved that his benefits were still in place, I wasn’t pleased that they had me worried and that I had to double check to make certain his status was correct.

Tuesday—We took Alex to one of his favorite places, the Target Café, for a snack of potato chips and Sprite. Ed and I have decided that outings to the Target Café provide us with a nice break, as well, since Alex happily watches people come through the store, and an added bonus for him is when small children, whom he finds especially amusing, appear. With something tasty to eat and drink and a good people-watching view, Alex thoroughly enjoys himself and smiles the entire time he’s there. We’re pleased that something so simple and inexpensive makes him happy. Besides, Ed and I are also fans of the hot pretzels they serve there, too.

Wednesday—Alex’s behavioral therapist came for her weekly session with him. Before she arrived, I did my regular inspection of our main floor to make certain that the house looked nice before she arrived. In addition, I filled out his weekly behavioral report for her, noting any issues we had observed during the past week. As usual, I wrote that his primary weakness has been speaking too softly to be heard, which shouldn’t seem like a problem. However, as she has explained to us, not everyone will be as patient as Ed and I are about having him repeat himself. Consequently, we have been working with him to make his voice audible. In addition, she and I worked together on Alex’s newest ploy, leaving in the middle of his behavioral therapy sessions to go to the bathroom. I suggested that she not even mention the topic, as he was likely to obsess on it, and I closed the bathroom door to hinder his efforts to interrupt his session. Our plan worked, as Alex only tried to leave the session once, and I told him to go back because he did not need to go to the bathroom. I think he learned that two women could outsmart him any day of the week.

Thursday—Alex’s case manager who oversees his state disability benefits came to see us to complete his annual level of care survey. The state uses this information to assess what services and funding Alex should receive. To determine his eligibility, Ed and I had to answer several questions regarding his physical mobility, his self-care skills, his self-directional abilities, and his learning skills. His case manager helped us immensely as she was able to explain the nuances of the questions and provide examples of what kinds of skills the questions intended. As usual, Ed and I were in complete agreement on our answers regarding Alex’s strengths and weaknesses. After his case manager left, Ed commented to me that this process was a good news/bad news experience. The good news is that Alex qualifies for disability funding and services; the bad news is Alex has weaknesses that qualify him for disability funding and services.

Friday—Alex was delighted to have books arrive that he had ordered from Amazon using gift cards he’d received for Christmas. He had chosen a book on winning strategies for the dice game Yahtzee, a chart explaining how to bet on the card game blackjack based upon the odds of winning, and a trivia almanac with questions for every day of the year written by one of his heroes, Jeopardy champion Ken Jennings. While he was pleased with these books, he was a little disappointed that another book he ordered had not yet arrived. Because The Handy Science Answer Book is apparently out of print, we had to order it from a specialty bookstore. Although Alex will be thrilled when that book arrives, I will be even happier since I won’t have to listen to Alex ask me if the mail has come, when I think it will arrive, and where I think the book currently is in transit. I just hope he’s as enthusiastic about that book when it finally does get here.

As I reflect back on the past week, I feel thankful that we have found wonderful people to help us with Alex. From his doctor to his behavioral therapist to his case manager, these support people have guided Ed and me with their expertise so that we can help Alex reach his full potential. Now if that Handy Science Answer Book would hurry up and arrive, I would be even more grateful.

“Tune your ears to wisdom, and concentrate on understanding. Cry out for insight, and ask for understanding. Search for them as you would for silver; seek them like hidden treasures.” Proverbs 2:2-4