Sunday, May 24, 2015

Planning for the Future

Just when things seem to be rolling along smoothly, something arises to stir the waters and make Alex’s future a bit uncertain. This week, we had our quarterly meeting with Alex’s team of support specialists, including his case manager, his behavioral therapist, and a representative from the company who provides respite care for him. In addition, the coordinator of his day program where he learns computer skills joined our meeting by speakerphone so that she could update the team on Alex’s progress. Also, Alex’s music therapist, who was unable to attend due to family commitments, provided a written report of Alex’s progress. Every quarterly meeting, Ed and I look around the room and are reminded how blessed we are to have such caring and capable people working with Alex.

As each member of the team provided input on Alex’s progress toward goals, we were pleased to hear positive assessments and encouraged that they believe he is doing very well and capable of learning more. Although we see significant improvements, it’s nice to hear good things from those who can be more objective than we can be as his parents. Probably the greatest blessing is that the two major areas of concern in his behavioral plan—physical aggression and property destruction—are behaviors we have not seen in a while, thanks to proper medication that helps his anxiety and to therapy that has helped him learn better coping skills. With those major hurdles aside, we can focus more upon developing the third area of his behavioral plan—appropriate social behaviors.

Because Alex is doing well, we agreed as a team to keep all of his supports in place with once a week sessions of behavioral, music, and recreational therapy, one afternoon a week with his peer companion as respite care, and two sessions per week of computer class at the day program. In addition, he will extend his day program time by staying an extra hour each session and having lunch with his peers at the day program so that he can continue developing his independence and social skills. Needless to say, we are delighted with Alex’s support programs, especially since he thoroughly enjoys working with all of these people and is showing signs of improvement from these interactions with others.

After our meeting, Alex’s case manager told me that she had more paperwork for us to sign but needed to be at another meeting, so we arranged for her to meet with us again later in the week. This time Alex, Ed, and I only met with her, and she needed to ask Alex some questions about how satisfied he is with the people who work with him. Although his speech limitations prevent him from expressing how truly content he is, his answers of “Good,” “Fine,” and “Yes” were accompanied by a convincingly big smile.

Then Alex’s case manager told us that some changes regarding services for adults with disabilities may be coming, based upon a federal government investigation in Rhode Island. She explained that the state agency that oversees services for the disabled in Rhode Island had been cited for not providing more opportunities for jobs, and the federal government is urging all states to encourage more community employment instead of placing adults with disabilities in day programs or sheltered workshops. Hence, day programs, like the one in which Alex is enrolled, may become a thing of the past. She went on to explain that vocational skills will be emphasized more, which is why she intervened to get Alex computer training, which is his best hope for employment.

After she left, I did some internet research to find out more about the Rhode Island programs coming under fire and found an article from January 15, 2014, in the Providence Journal entitled  “Department of Justice probe finds thousands of disabled R.I. adults ‘segregated’ in state programs.” [To read this article, please click here.] Apparently after observing state-licensed day programs and sheltered workshops in Rhode Island, the Department of Justice decided that the adults with disabilities who were participating in these vocational and day services were “unnecessarily segregated.” Consequently, they determined that these people should be integrated by working in community jobs. Although the article gives examples of people who are capable of working in the community instead of doing rote tasks for menial wages in sheltered workshops, I question how many others would be able to work in the community, due to various limitations. In addition to physical, intellectual, and social limitations disabilities may cause, communities may not have jobs to offer these adults or know how to train people with disabilities with the skills needed for the jobs.

Like the concept of mainstreaming special education students into regular education classes, this federal government decision in theory seems like a good idea to provide opportunities to those with special needs. However, the reality is that not enough resources, training, and opportunities for success are actually available. For example, when students go from a special education class of four students to a mainstreamed class of twenty-four students, they certainly cannot receive as much one-on-one instructional time from the teacher, even when various accommodations are put into place. Consequently, they may not be getting all the support they really need. Similarly, if adults with disabilities are placed in community jobs instead of day programs or sheltered workshops, they may not have the skills they need to be successful to complete their assigned tasks and to integrate in the community. While the government proposes this shift in policy is a matter of civil rights, I suspect that the real impetus for change is the cost of providing services for the disabled.

If, indeed, the government mandates that day programs and sheltered workshops be eliminated, the results could be disastrous. Too many disabled people need the structure and support of these settings, and not everyone is capable of working in the community. As Ed and I always do, we keep pushing Alex to reach his potential, hoping that he will develop his skills so that he can be independent eventually, and we trust that God has a plan for his future. However, not all adults have the resources Alex does, and I believe that the Department of Justice’s decision could have a profoundly negative impact on thousands of adults with disabilities. Now that would certainly be an injustice.

“In the same way, wisdom is sweet to your soul. If you find it, you will have a bright future, and your hopes will not be cut short.” Proverbs 24:14

Sunday, May 17, 2015


This past week, a colleague who teaches special education at the school where I teach English was commenting that some of her students who have autism don’t realize that they have autism. In fact, some of their parents insist that they do not want their children to know that they have autism. As teachers of these children, we must respect the parents’ decision and be careful never to reveal that we know those children have been diagnosed with autism. My colleague, who knows that Alex has autism because we have always been open about his condition, then asked me, “Does Alex know he has autism?”

As I explained to her, Alex does, indeed, know that he has autism and has been aware of this diagnosis ever since he received it as a preschooler. We never wanted him to think that we were keeping a secret from him, and we thought that not telling him might make him think he should feel ashamed of having autism, which we certainly did not want. Just as parents who adopt children are encouraged to tell their young children that they have been adopted so that they grow up knowing the truth and don’t discover it later in life, we have always been candid with Alex about autism. Because autism impacts his life tremendously, we wanted him to understand why some things are more difficult for him than they are for other people. Alex knows that just as he has brown eyes and brown hair, he also has autism. We’ve never had to wonder when we should break the news to him because he already knows.

Being someone who likes knowing the origins of words, I find the etymology of the term autism interesting. Coming from the Greek root autos, meaning self, the word essentially means a state in which the person exists separately from others. As WebMD explains, “One symptom common to all types of autism is an inability to easily communicate and interact with others. In fact, some people with autism are unable to communicate at all. Others may have difficulty interpreting body language or holding a conversation.” (“History of Autism.” Web MD, 12 May 2013.)

Certainly, Alex’s struggle with spoken language has hindered his ability to interact with other people, and we have worked with him to improve his speech and social skills. For him, spoken English is like a foreign language to most of us, where he struggles not only to find quickly the words he wants to say but also to figure out the proper grammar and syntax. Add in sensory issues that overwhelm him, and I imagine that for him, holding a conversation is much like trying to make oneself heard in the midst of a middle school cafeteria at lunchtime. No wonder he prefers to sit quietly and just listen instead of engaging in the discussion!

On Friday evening, we went to my sister’s house to celebrate my niece’s birthday. In a room full of fourteen lively family members and one dog, Alex sat calmly and quietly, seeming to enjoy listening to the various conversations without being overwhelmed and even smiling as he heard things that amused him. At times, he would quietly imitate people, especially my sister, whose voice fascinates him, repeating what was said. Although we know this is not socially appropriate, we believe that Alex is practicing speech so that he can better interact with others. So long as he does this quietly without disturbing others, we allow him to do it. Moreover, we explain to others that he does this because he really likes the person whom he is imitating; truly, “Imitation is the sincerest form of flattery” when Alex repeats after other people.

As Alex sat contentedly enjoying the discussions, he seemed as though he wanted to join the conversation but did not know how. At one point, my brother was talking about NASCAR, one of Alex’s favorite topics, and Alex quietly but excitedly asked Ed and me, “Is Uncle Freddy getting tickets to a NASCAR race?” We explained that Uncle Freddy was talking about having a gift certificate to learn how to drive a racecar on a NASCAR track, which Alex seemed to find interesting. Later, he noticed that my niece’s boyfriend had holes in the knees of his jeans, and he quietly commented to Ed, “He needs to buy a new pair of jeans because he has holes in them.” Ed then quietly explained that he had probably bought them that way because that was the style. Alex seemed a bit perplexed, but accepted that explanation.

After that, as my niece Hannah was talking, Alex leaned over to me and asked with concern, “Does Hannah need to have surgery?” When he last saw Hannah, she was talking about going to the orthopedic specialist to see if she would need surgery on her hip this summer, and he wanted to know what the doctor had said. Realizing that Alex had been listening to conversations with interest and was concerned about other people, I knew that he really did want to participate in the discussion. Instead of answering him myself, I told him that he could ask Hannah himself. Although he was tentative, he asked her whether she would need surgery, and she seemed pleased that not only had he shown concern about her but also that he was relieved she would not need surgery.

Although autism makes conversation and social interaction difficult for Alex, he does not exist in his own world. He genuinely cares about other people, even if he doesn’t quite know how to talk to them, but he wants to engage with them and find out more about them. Indeed, he’s even showing concern about them. Even though we were a little worried about how he would handle being in a large group of people, we realized Friday evening how important it is to give Alex opportunities to practice the conversation skills and social skills we have been practicing at home with him. Clearly, he is learning these valuable life skills, and we are delighted to see him making progress in these areas. More importantly, we are thankful to see his concern for other people and evidence that he is learning how to express those concerns verbally, proving that he continues to overcome the obstacles autism has put in his path so that he can truly enjoy being with others.

“Let your conversation be gracious and attractive so that you will have the right response for everyone.” Colossians 4:6

Sunday, May 10, 2015

Blessings of Motherhood

“…While Earth herself is adorning,
This sweet May-morning,
And the children are culling
On every side,
In a thousand valleys far and wide,
Fresh flowers; while the sun shines warm,
And the babe leaps up on his mother’s arm:––
I hear, I hear, with joy I hear!”

William Wordsworth, “Ode: Intimations of Immortality from Recollections of Early Childhood”

Yesterday, as an early Mother’s Day gift, Ed brought me a beautiful bouquet of a dozen delicate pink roses from Alex and him. As I began to unwrap the protective covering surrounding the flowers, Ed noticed that one had been bent and snapped off its long stem. When I began to place them in a vase, their leaves fell off, and I found a stem without a rose. Disappointed that the roses were not as perfect as they had appeared, Ed sighed and apologized. However, I was delighted with my ten and a half leafless roses. Not only am I blessed to be Alex’s mother, but I am also blessed to have a loving and thoughtful husband who makes every holiday special. Besides, as I explained to him, those ten and a half roses symbolize our life with autism­­––not what we expected, but special and sweet nonetheless.

For all the sessions of various therapies, I’m thankful for the progress Alex has made.

For all the different pills I’ve administered, I’m grateful that Alex is better.

For all the questions I’ve had, I’m indebted to those who have answered them.

For all the times I have waited, I’m pleased that the waiting was worthwhile.

For all the worries and tears and fears, I’m appreciative of the joys Alex has brought me.

For all the prayers I have prayed, I’m content that God has always been faithful.

Twenty-four years ago, when I first discovered that I was going to be a mother for the first time and that I was carrying Alex, who was to be my only child, I had no idea what life had in store for us. After two dozen Mother’s Days, I can look back over all the troubles and triumphs and know how blessed I am to have Alex as my child.

When I update Alex's therapists on his progress, I’m thankful for our awesome support team.

When we do typical family things like going shopping or eating at restaurants or watching television, I’m grateful that we can enjoy these times together because Alex is better.

When Alex asks me countless questions, I’m indebted to Google for having answers when I do not.

When I tell Alex I’ll do something in five minutes and he sets the kitchen timer, I’m pleased that he makes me keep my promises.

When Alex takes my hand in a crowded place, I’m appreciative that he trusts me to guide him.

When Alex and I say bedtime prayers every night, I’m content that I have taught him always to have faith in God.

Happy Mother’s Day to my wonderful mother, who taught me all the things I needed to be Alex’s mother, to my sister and my sisters by marriage, to my aunts and cousins, to my dear friends, and to the autism moms like me. May God bless our children and us!

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

Sunday, May 3, 2015

Autism: Something Old, Something New

This week, the Huffington Post published an outstanding article online entitled “Autism: Maybe It’s Not What We’ve Been Told.” [To read this article, please click here.] Written by an autism dad with a degree in biology, he explains how his three-year-old son with autism made significant sudden improvements in his speech, eye contact, behavior, and motor skills after being treated for a strep infection with antibiotics. Amazed by the positive changes in his son, John Rodakis began studying medical research regarding connections between antibiotics and improvement in autistic symptoms and was surprised how little research has been done in this area.

As he points out in his article, nearly all of autism research focuses upon genetics instead of biomedical causes. However, as he notes, recent medical research indicates that gut bacteria has been linked to ulcers, food allergies, and possibly diabetes. By focusing almost exclusively upon autism as a strictly genetic disorder instead of a medical condition, scientists may be missing the real cause of autism, one that could actually be treatable and perhaps even cured. John Rodakis asserts the need for research to pursue connections between autism and metabolism, immune function, and the microbiome (the bacteria, fungi, viruses, and other organisms that live on and inside the human body). He states, “The encouraging thing about this view is there is reason to believe that many of these children can get better.”

Also in the news this week, the U.S. government has changed its recommendation regarding how much fluoride should be put in drinking water, lowering the amount for the first time in more than fifty years. [To read a news report on this issue, please click here.] In 1962, fluoride began being added to drinking water supplies as a way to prevent tooth decay. However, apparently some children are getting too much fluoride, causing their teeth to develop white splotches, which are now found in approximately 40 percent of adolescents. This change of policy has made me wonder about what other recommendations the government has offered that may have negative effects upon children. While the white splotches appear to be only cosmetic, could fluoride or other substances our children are given for health reasons be responsible for unexplained increases in ADD/ADHD, allergies, asthma, and autism? As parents, we must pursue the unanswered questions behind what is causing our children’s health issues.

In previous blog entries, I have noted that we have followed the research done by doctors and scientists whose own children have autism, knowing that they will actively search for ways to make their children better but will not engage in risky treatments that could harm their children. While some of the methods we have tried with Alex under doctor supervision have had little or no effect upon him, others have certainly made him better. After tests showed that he had sensitivities to the proteins in milk (caseins) and grains (glutens), Alex has been on a gluten-free and casein-free diet that has kept him healthy and without digestive issues that plague many people with autism. Other tests revealed that he had heavy metal poisoning, specifically arsenic, mercury, and aluminum, and we treated this condition through chelation therapy with DMSA, a sulfur compound that binds to the toxic metals and removes them from the body. Had we left those toxins in his system, he could have developed serious health issues, such as cancer, in the future. One of the most significant improvements we observed occurred when we treated him with methyl vitamin B-12 shots, which we believe treated nerve damage. Within a few weeks of starting twice a week B-12 shots, Alex was finally able to toilet independently after ten years of unsuccessful potty training. To us, that was a miracle cure. Had we simply assumed that autism is a genetic disorder that could not be treated medically, we would not have seen the progress we have celebrated over the years.

Currently, we are still struggling with recurrent Candida yeast overgrowth in Alex’s digestive system, a battle that has been fought throughout his life intermittently but especially vigilantly in the past three years. Using a variety of antifungal medications and nutritional supplements, we keep trying to get rid of this stubborn invader. Over time, we have learned to recognize the signs, which I have dubbed ABCD: A-acne outbreak, B-behavioral decline, especially an increase in OCD and anxiety, C-coating of mouth and tongue in the morning which makes swallowing pills difficult, and D-dandruff outbreak. When the Candida is under control, all of these symptoms disappear. When the Candida is out of control, Alex’s negative behaviors escalate, even to the point of aggression; therefore, we must begin treatment as soon as we see the early warning signs. Hopefully, we will finally get the yeast under control so that Alex doesn’t have to suffer the annoying symptoms that bother him.

Consequently, like autism dad John Rodakis, I fully believe that autism is not what we’ve been told––a strictly genetic disorder that affects the brain––but a medical condition that needs to be investigated further so that our children can be treated and get better. If they have digestive conditions such as leaky gut or fungal and/or bacterial infections or nerve damage or heavy metal poisoning or allergies, to ignore these conditions is simply wrong. As John Rodakis states, “We need to fund this kind of research. Our children deserve better answers.” Indeed, they do.

“Behold, I am doing a new thing; now it springs forth, do you not perceive it? I will make a way in the wilderness and rivers in the desert.” Isaiah 43:13

Sunday, April 26, 2015

Wait and See

As Autism Awareness Month comes to a close this week with the end of April, the flurry of media reports will likely end, and autism awareness will be primarily put aside for another year except for those who live with autism on a daily basis. After twenty years of researching autism, trying to find ways to help Alex, I’ve found bits and pieces that have confirmed my suspicions and that have made some improvements along the way. However, no real breakthroughs in autism research have occurred in the past two decades. Debates still linger regarding the causes, best treatments, and even whether the increase in autism rates is due to more cases or better diagnosis. Basically, most of the research being done and reported isn’t making much of an impact on the day-to-day life of those families whose children have autism.

Nonetheless, we move forward with hope. When Alex was first diagnosed with autism nineteen years ago, I remember a statement from the first book I read on autism that has stayed with me all these years, more than any other piece of research I’ve done over time. Essentially, people with autism usually continue to get better as they get older, even into adulthood. When Alex was little, the theory of windows of opportunity for learning, emphasizing developing the young child’s brain, was popular. Certainly early development is important, and early intervention does help children with autism. However, neuroplasticity research has shown that the brain continues to develop over time, even into adulthood, well beyond that window of age four or five. Shortly after Alex’s autism diagnosis at age four, I felt a frantic sense of trying to help him master skills and pull him through that window before it closed forever. Thankfully, scientists have recognized that learning is a lifelong process, and indeed, “old dogs” can “learn new tricks.”

Along with remembering that people with autism tend to improve over time, I also keep in mind the wisdom of a former student. Shortly after we found out that Alex, indeed, had autism, I told my seventh grade honors English students that I had been absent because my son was being tested and was diagnosed with autism. In addition, I explained that he also had hyperlexia, a rare condition where children have advanced reading skills at a very young age along with problems with language and social skills. Specifically, Alex had taught himself to read by the age of three, yet he could not speak well. As they sympathetically listened, I told them that he would need speech therapy and that we hoped he would get better in time. Perhaps sensing my worries, one of my brightest students reassured me, “But, Mrs. Byrne, if he can read, he can do anything!” Over the years, her earnest optimism has lifted my spirits, and Alex’s ability to read has not only helped him to learn but also has provided him with a constant source of entertainment.

After reading thousands of pages of research on autism, I keep searching for the one piece of information that will make all the difference for Alex. When I begin to think nothing new will appear, I am motivated to continue because I hear in my mind Alex saying one of his favorite phrases, “Check it out.” Like me, he knows the power of the written word and believes that he will find all the answers to his questions in books and online. I watch him Google information on his iPad several times a day and reach for his beloved reference books when some burning question emerges in his mind. Perhaps he has watched me over the years reading books and online research and has imitated that behavior, or maybe he has inherited my tenacity never to be satisfied until all the puzzles are solved. Last week, he bought a huge medical book and spent hours perusing some of its more than one thousand pages. A wonderful irony would be that he figures out the mysteries of autism before I do—that he only needed me to teach him how to do research so that he could find the answers on his own that I’d been seeking for years.

Besides the eternal hope I carry that Alex will someday be completely healed of the symptoms of autism, I move forward with the patience I have learned from raising a child with developmental delays. Patience does not come naturally to me, but realizing that Alex has to do things on his own timetable has helped me learn to wait with anticipation instead of frustration. My need to micromanage his world has been replaced with my firm belief that God is in control and will take care of Alex. By trusting God, my faith has grown in unexpected ways, and as I learned many years ago, autism does get better in time. As we move forward into Alex’s adulthood, we continue to see progress, and I fight my impatient need to wonder what the future holds for Alex. When I become anxious, worrying whether he will ever become independent, I look back on how far he has come, remind myself that God has always taken care of us, and remember the reassurance of my son, who often wisely advises me: “Wait and see.”

“Wait patiently for the Lord. Be brave and courageous. Yes, wait patiently for the Lord.” Psalm 27:14

Sunday, April 19, 2015

Curve Balls

curve ball-[slang]-something that is unexpected, surprising, or disruptive

Two weeks ago marked the beginning of the Major League Baseball season, which Alex has been eagerly anticipating. Like his grandfather and mother, he’s a lifelong Chicago Cubs fan who starts each season believing that this will finally be the year they win the World Series—that eternal optimism that keeps Alex cheering for his beleaguered team. However, various difficulties, usually in the form of poor pitching, beset the Cubs every year and make the season more difficult than anticipated. This week we had some curve balls thrown our way that we didn’t expect, and we had to figure out what was the best way to address them, especially since things have been going very smoothly the past few months.

On Monday, we found out that our insurance company is refusing to pay the oral surgeon who removed Alex’s wisdom teeth in November, claiming that the extractions were not medically necessary. After Alex got along amazingly well when his teeth were extracted, we thought that we had come through that experience much more easily than we had anticipated. However, this curve ball may mean that we will have to pay for the surgery, which our insurance is supposed to cover according to our policy. Fortunately, the woman who handles insurance at the oral surgeon’s office has been very helpful, pleading our case with the insurance company as we appeal their ruling. She commented that Alex’s wisdom teeth were among the worst impacted she has ever seen on x-rays; in fact, the oral surgeon had described them to us as “totally bone impacted” and explained that they needed to be removed so that they did not cause ongoing pain and further damage to his teeth. (They had already damaged the roots of his upper twelve year molars.) Moreover, their office believes that our insurance company is discriminating against Alex because he has autism. While we are frustrated that the insurance company is being difficult, we are thankful that our oral surgeon’s office is not only being understanding but also supportive, helping us fight the insurance company’s refusal to pay and appealing their decision.

On Tuesday, when Alex went to computer class, we were told that he would have a new staff person working with him because the woman who has been working with him has been assigned other responsibilities. To ease the transition, the woman who has been working with him since he started computer class in January will train and shadow the new woman who will be working with Alex. Although we understood the need for the change, we wished that we had been told ahead of time so that we could have prepared Alex, who is especially fond of the woman who has been teaching him computer skills. In addition, those who work with Alex are supposed to be trained by his behavioral therapist so that they know how to address any issues that may arise with him. While Alex seemed to handle this change of staff fairly well, I called the agency with my concern with the need for the new staff to be trained on his behavior service plan and was assured that this will happen.

Later in the day, Alex had another curve ball thrown at him when we found out his behavioral therapist will not be available for our Friday recreational therapy sessions for three weeks, due to scheduling conflicts. Since Alex looks forward to these Fun Fridays, I sensed that he was not very happy with this news, yet he did well during his behavioral therapy session. However, after she left, he expressed his disappointment to me about missing Fun Fridays. Apparently two changes in one day overwhelmed him as he resorted to exaggeration and dramatically told me that his music therapist was never coming again. I reassured him that he could depend on his music therapist, who faithfully comes to see him every Thursday. In addition, I suggested that he and I could still do Fun Fridays, even though his behavioral therapist would not be there. This seemed to ease his mind a bit.

After a blissfully uneventful day on Wednesday, when he enjoyed spending time with his caretaker while I enjoyed shopping, the changes of the week seemed to really hit home on Thursday. As promised, his music therapist arrived for their weekly session, but Alex became agitated instead of relieved. For the first time in months, he was anxious and upset, and he let me know by grabbing me and muttering angrily. Fortunately, his fantastic music therapist and I worked together to calm him quickly, and he settled down and had a great session of music therapy.

On Friday, I kept my promise to Alex that we would still have Fun Friday, and I sweetened the deal for him by inviting my mom and sister, his beloved Aunt Tammy. As we enjoyed lunch and visiting at Burger King, Alex entertained himself by imitating Tammy, whose voice he finds fascinating. After a week of unexpected and unwelcome surprises, it was nice to relax and spend time with family. I thought we were finished with curve balls for the week until I got home and opened a letter informing us that the agency that provides us with respite care (Alex’s caregiver on Wednesday afternoons) and day services (computer classes) had just assigned us a new representative to coordinate his services—the third one in six months. Although our contact with this person is primarily limited to our quarterly meetings with Alex’s team of professionals, another change of staff just added to the already unsettling week we’d already had.
While I know that life is full of changes and that Alex will need to learn to adapt even when he’s not happy, Ed and I still try to prepare him for transitions, knowing that he prefers predictability and routines. Since things have been going so smoothly lately, we felt disappointment that these sudden changes this week upset Alex. Whenever he seems anxious, I try to analyze whether he is responding to the situation, picking up on my anxiety, and/or dealing with yeast overgrowth in his system. Consequently, I reassured him as best I could, tried to keep myself calm, and gave him an antifungal medication, just to cover all the bases.

After a trying week for all of us, we enjoyed a relaxing Saturday with no obligations, and Alex seemed much happier and calmer, as though he had come to terms with all that had been thrown at him this week. Last night, he smiled and happily announced to me out of the blue, “You’re healthy!” Of course, with his pronoun reversal problems what he really meant was that he is healthy. After I had spent the week trying to reassure him, he was now trying to reassure me that everything is going to be fine. Despite the various challenges of the week, we move forward optimistically, as all true Cub fans do, knowing that eventually things will get better in time.

“Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love Him.” James 1:12

Sunday, April 12, 2015

Managing Meltdowns

“You don’t want to use the typewriter ever again because you make too many mistakes!”  When Alex utters that line (with the typical pronoun reversal in which actually he means himself when he says "you"), we know that he has reached his limit. For some reason, frustration has been simmering for a while, and he lets us know by saying something that seems nonsensical in a voice much louder than his usual barely audible speaking voice. As though the National Weather Service has issued a severe weather alert, we spring into action, preparing to face the storm, in this case, a full-blown meltdown.

Most autism parents would say that dealing with their children’s meltdowns is one of the most upsetting, difficult, and perplexing issues of life with autism. Often these meltdowns occur in public due to sensory overload, and onlookers may mistakenly perceive the behavior as a bratty child whose incompetent parents allow him/her to throw temper tantrums. However, meltdowns are not intended to get attention or to get one’s way; meltdowns occur when the world is too much and the child simply can no longer cope.

Recently, I read a fantastic blog entry entitled “What a Meltdown Feels Like for Someone with Autism," written by autism mom Emma Dalmayne, who is also an adult on the autism spectrum. [To read this essay, please click here.] In this article, she explains what can trigger a meltdown and offers helpful suggestions of what to do and what not to do to help someone who is having a meltdown. I only wish that I had known this information when Alex was younger because I could have known better how to help him when he and I both felt quite helpless.

In explaining meltdowns, Emma Dalmayne describes the overwhelming emotions as, “Everything is too much…” and states, “Irrepressible anger that may seem completely irrational to an outsider can be inwardly devastating us internally.” She also notes that a meltdown may seem to be a reaction to something rather trivial, but this trigger may actually be “the last straw on the camel’s back.” She adds that the meltdown results from “a build-up of things, and frustration will be the reason.” To prevent a full-blown meltdown, she recommends being aware of the early signs of meltdown, such as pacing and verbal aggression. With Alex, when he starts muttering about typewriters, not remembering certain years, gas prices being too high, and/or making mistakes, we know that his anxiety is escalating. When we have been able to trace back with Alex the source of his meltdowns, we have realized that an accumulation of frustrations led him to yell at us about typewriters and mistakes.

After describing the emotions behind meltdowns, she admonishes parents not to try to reason with the child. Specifically, she says not to say that everything is okay because that is “trivializing our distress and it will make us worse.” Also, she explains that saying, “Stop” may increase anxiety rather than help the situation “because we would if we could; no one wants to feel this way.” When Alex has had meltdowns, I know I have been guilty of trying to reassure him by telling him everything would be all right and by telling him to stop because I was afraid he would hurt himself or someone else. How I wish I had known the right things to say to him that would have made him feel more secure instead of more frantic! We could have defused many meltdowns, had we known this wisdom.

Along with telling what not to do during a meltdown, Emma Dalmayne offers good suggestions for ways to help people with autism when they have meltdowns. To address sensory overload, she recommends a chewy or washcloth to bite on or a weighted blanket. For safety, she suggests a crash mat and a safety helmet. Also, she warns that while some children will fight in this fight or flight mode, others will flee and need to be taken somewhere safe. However, she recommends that restraint only be used as a last resort because “a touch can feel like an electric shock” which may increase the intensity of the meltdown. As children grow, these suggestions become even more important because their increasing size and strength can make them a greater danger to themselves and others.

In addition to these excellent tips, we have learned from experience and from his behavioral therapist techniques to help Alex calm himself. For example, we know that addressing his upset with negative responses can be like pouring gasoline on a low fire. Instead of asking him, “What’s wrong?” we need to reassure him that we will help him deal with whatever is upsetting him. “Can I help you?” is a better question for him because he knows he is not dealing with the problem alone. Sometimes I will assure him that I will help him fix whatever he’s worried about, and that eases his mind. Other times, I will help him take control of the situation by offering suggestions and choices when he seems too panicked to know what his options are. If he cannot make a decision, we will discuss the pros and cons of each choice, which seems to calm him. In addition, he sometimes needs his beloved numerical tools to settle down, so I will offer him a timer or watch to help him be more patient about waiting. Often, he likes to dictate a list for me to write, and then reading the list several times seems to soothe his anxiety, perhaps because he is more comfortable with written words than spoken words.

Behavioral therapy has proven especially valuable to us in that Alex has learned various routines to calm himself when he is upset. His therapist has worked with him to learn coping skills, such as counting and taking deep breaths to combat anxiety. As we go through these calming techniques, I can make suggestions, but I must let him decide what he needs to feel better. For instance, if he doesn’t want to count, I respect that and allow him to choose the technique he thinks works best at the time. He has also learned how to verbalize his feelings to explain why he is frustrated instead of resorting to nonverbal expressions, such as throwing things or hitting. Over time, he has learned that when we ask him what he is really upset about, we are helping him get to the root of the problem in order to fix it. Not only does Alex know that he can count on us when he is overwhelmed, but also he has discovered that he can take control of his emotions and the situation so that he can fix the problem himself.

While managing meltdowns can be one of the most difficult behaviors to address in autism, learning calming techniques can prove very helpful. In addition, those witnessing the meltdown must recognize that the upset––no matter how irrational it seems––is very real. As Emma Dalmayne points out, “Please don’t punish or berate your child for how they have reacted, as it’s not willful or even conscious.” By understanding the triggers behind the meltdowns, offering support, and assisting with coping skills, parents can help their children deal with overwhelming emotions and keep everyone calm and safe.

“May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit.” Romans 15:13

Sunday, April 5, 2015

Easter Hope

As an autism mom, I always anticipate the arrival of April and the attention the media gives autism for Autism Awareness Month. Avidly reading the various news features as well as blog entries by others who write about autism, I keep hoping to find some new information that might help Alex. However, I have been disappointed that much of what I have read this week has had a rather negative tone, often critical of autism parents, who are criticized for not accepting their children as they are and for wanting to change them.

After my autism readings this week did not inspire me, I ran across a terrific blog entry written by Mary Evelyn Smith, a mom whose son has spinal bifida and uses a wheelchair. [To read this article, please click here.] Her essay, “That Time I Defaced My Son’s Developmental Questionnaire” made me laugh, and I appreciated her approach to the tedious task of filling out forms we parents with children of special needs often face. Instead of becoming bitter, she humorously answered questions that were clearly ridiculous, considering her son’s disability. For example, she answered the question “Does your child jump with both feet leaving the floor at the same time?” by altering the provided illustration of a child, adding a wheelchair and a banner proclaiming, “That’s how I roll.” In addition, she points out that these questionnaires “are a grossly inadequate representation of his greatness” and suggests that parents of special needs children offer their own descriptors, as she does for her son. To illustrate, she creates her own question: “Does your child possess a dogged friendliness akin to that of a future politician or overzealous Walmart greeter?” Her ability to see the positive and the potential in her son will certainly benefit both of them as they wait for him to get better with time.

Recently, we had to fill out a similar questionnaire for Alex to assess his skills. Although in the past we have completed assessments of his daily adaptive living skills so that he can receive appropriate supports, we were given a new survey to complete, the Risk Mitigation Tool. While this information is necessary so that those working with Alex know what help he requires, the number of check marked items can be a bit overwhelming. For instance, one item on the RMT states, “This individual needs support with…” followed by 32 items. Of those 32, we had chosen 18. Fortunately, we did not need to check eating and drinking because Alex is quite adept at both of those skills, and we did not have to check “constipation episode tracking” or “dehydration episode tracking,” probably because he IS so good at eating and drinking. However, we had to indicate that he needs support with several areas including the following: buying groceries, cooking, laundry, and scheduling medical appointments. To be truthful, my dad, who is amazingly healthy and active at 78 years old, would also have to admit he needs help with cooking and laundry since my mom always takes care of those for him. Similarly, I take care of scheduling Ed’s medical appointments because he hates doing that, so he would have to check that on his list of supports needed.  Fortunately for me, the RMT does not include reaching items on top shelves, killing spiders, and mowing the lawn, so I may appear more self-sufficient than I really am. Essentially, we all have risks to mitigate, but right now Alex has a few more than most. We hope that with time and training, his list will dwindle.

Since I like Mary Evelyn Smith’s suggestion about coming up with new items for questionnaires that highlight our children’s skills, I have some ideas for Alex.

Does your child show a willingness and enthusiasm to eat any and every food placed in front of him––even broccoli, carrots, peas, and spinach––except for popcorn (because it’s too salty)?

Does your child remember small details that most people forget, such as the birthdates of every extended family member (handy for sending birthday cards on time), the Presidents of the United States in order (useful for being a Jeopardy contestant), and over 1000 digits of pi (amazing fun for annual Pi Day celebrations every March 14th)?

Does your child compliment and encourage you in creative and unique ways, such as seeing a picture of a supermodel in a magazine and asking if that’s you when you were thinner, reminding you that former pro basketball player Muggsy Bogues is the same height as you are, and telling you that your meatloaf rates a “99 percent”?

Does your child pray for nearly everyone he has ever met in life, and if you forget any of those who deserve “God Bless” in your nightly prayer roster, kindly remind you to include them in the list before saying “Amen”?

Does your child find joy in simple pleasures, such as going to Pet Supplies Plus to find the biggest bags of dog food they have or going to the Target CafĂ© to have apple chips and Sierra Mist or driving past the gas station to see if gas prices have gone down and excitedly announcing this week’s price?

While Alex may not fit the typical profile of people his age, he possesses special gifts that entertain and bless us as we wait for him to learn the more mundane skills of life, such as laundry and cooking.  Moreover, we believe that he will continue to get better and better because we have seen the great progress he has made over time. As we celebrate Easter Sunday today, we remember God’s great love for us and celebrate the hope we have for our future, knowing that He will take care of all of our needs.

“Praise be to the God and Father of our Lord Jesus Christ! In His great mercy He has given us new birth and a living hope through the resurrection of Jesus Christ from the dead.” I Peter 1:3

Sunday, March 29, 2015

Spring Break 2015

This past week, I’ve been on spring break from school; however, other than not having to go to work, my week has been fairly typical. Ed, who had his spring break earlier in the month, has been working all week, and Alex has continued his regular schedule of therapy sessions: behavioral therapy on Tuesday, respite time on Wednesday, computer class and music therapy on Thursday, and recreational therapy on Friday. While several of my friends and family have spent spring break vacationing in warmer climates such as the Caribbean and Florida, I’ve been tending the home fires here in Indiana, where it has snowed twice. Although I’ve tried not to be envious of those who were able to escape the cold weather here, I have wished that I could lie on a warm beach, which I know would have been therapeutic for the end-of-winter cold I’ve battled this week. Nonetheless, this spring break has turned out to be one of the best ever, despite the cold in the air and in my head. This week has reminded me how far Alex has progressed.

On Tuesday, Alex, who has also been fighting a cold, decided that he was too tired to finish his behavioral therapy session with Jennifer and went upstairs to his bedroom to rest. Instead, she and I used this time to discuss new goals for Alex since he has mastered many of the previous goals we had set for him. When he began behavioral therapy two and a half years ago, our primary concerns were teaching him to manage his behavior so that he would not resort to physical aggression and/or property destruction. By learning calming techniques, he has learned appropriate alternatives to handling his anxiety and frustration, which has made our lives much more peaceful. Since Jennifer had never heard Alex’s history, I explained what had led us to behavioral therapy, including describing the upsetting behaviors that led to his hospitalization exactly three years ago. Although I don’t like to recall this terrible time in our lives, I felt she needed to know this information. As she sympathetically listened, I described how out of control Alex had become and how desperate we were to get help for him. Instead of being upset by reliving this painful memory, I can now calmly explain what transpired because I know that desperate times called for desperate measures. Ultimately, Alex’s hospitalization was the best thing for our family because he finally got the help he needed, and I can have peace about that. That was the beginning that led us to people who could help, the fantastic support team who are providing Alex with the tools he needs to be successful.

On Thursday morning, I took Alex to computer class instead of Ed since I was home and he had a meeting. This was a good opportunity for me to see how he performed in the day program setting. As Ed has assured me every week since Alex started the computer class in January, Alex does a terrific job of following instructions and cooperating nicely with the staff there. While I was sitting in the waiting room eavesdropping on Alex’s session, the director of the day program, who had been very reluctant to allow Alex to participate in activities there because of his history of aggression, came to chat with me. Commenting on how well Alex has done (much to her surprise, I’m sure), she remarked that she was glad that he would be starting a second day each week of computer classes and suggested that he try staying for lunch in the near future. Her positive attitude reinforced that we had done the right thing by turning down our original first choice for a day program so that Alex could attend this one instead. The much smaller facility, which is conveniently located less than five minutes away from our home, allows Alex to receive the support he needs. Moreover, they have shown great flexibility in having him gradually adapt to the program by starting with only one hour per week with the idea of eventually adding more time as he becomes more comfortable there. He is enjoying his time there learning computer skills, and the staff people have been wonderful with him.

Later that afternoon, his music therapist, Noel, told me that Alex had done “fantastic” in their session and began noting all the different areas in which he has shown progress, especially in his behavior and communication skills. Noel’s input is especially valuable because he has known Alex for five and a half years and has seen him at his best and worst. Although we took a hiatus from music therapy for a couple of years during that worst time because Alex was uncooperative, we were delighted to be able to resume music therapy with Noel about fifteen months ago. Not only is Noel very skilled at developing Alex’s communication and social skills through music, but also as a young man, he provides a great role model for Alex, even positively influencing Alex’s taste in clothing. While Noel is usually pragmatic in discussing Alex, on Thursday, he was enthusiastic in describing how well Alex is doing and how much progress he has made.

Yesterday Ed and I took Alex out to dinner because he has done so well this week, and he thoroughly enjoyed himself. Three years ago, if someone had described how pleasant and calm Alex could be in a restaurant, we could not have imagined such a scenario. Not only can we enjoy a meal in peace, knowing that Alex won’t deliberately misbehave to get attention or exhibit anxious behavior that makes everyone nervous, but he also participates in the conversation, making appropriate comments and asking good questions. What many parents would take for granted we know is an accomplishment several years in the making, and we are truly grateful.

When I began writing One Autism Mom’s Notes nearly five years ago in June 2010, one of my goals was to give other parents hope. We had been through a rough time with Alex during adolescence, and he had emerged much better. During the past five years, we have had ups and downs, and we survived the traumatic time three years ago when we thought we had lost our son to madness. We didn’t know how to reach him, but God did, and He provided us with not only the caring people we needed to guide Alex back to us but also the faith and strength and hope we needed as we waited for the breakthroughs. To see Alex overcome so many obstacles, we know that he can continue to make progress, which gives us even greater hope for the future. In my first blog entry, I noted that I needed to write Alex’s history so that he could look back and see how far he has come, and I continue writing with that purpose in mind, now more than ever. While my spring break wasn’t the typical vacation filled with fun in the sun, I’m grateful for the encouragement Alex’s therapists have given me this week and for the blessings God has given us in answering our prayers and making Alex better. Truly, nothing is better than this.

“He will rescue you again and again so that no evil can touch you.” Job 5:19

Sunday, March 15, 2015

Dining Out on a Gluten-Free Casein-Free Diet

When a child has a food allergy or sensitivity, dining out can be tricky, trying to navigate what menu items do not include potential allergens. When Alex was seven years old, we discovered that he, like many children with autism, has sensitivities to glutens found in wheat and other grains and to milk products. Since then, we have tried to keep his diet as free of gluten and dairy products as possible. The availability of online menus with nutritional information makes it easier for us to dine out at restaurants or to get take-out food from fast food restaurants. Some restaurants make this task easier than others, depending upon how user friendly their nutritional guides and allergen information lists are. Here are some of our favorite restaurants and how they fare in terms of presenting information and offering food Alex can eat on his gluten-free and casein (dairy)-free diet.

Yats—This Cajun and Creole restaurant always offers at least two main dishes that they clearly identify as GF (gluten-free) and DF (dairy-free) as well as providing vegan choices. Alex’s favorites: white chili or red beans and rice, minus the bread that comes with the meal

Bob Evans––This family restaurant with a large menu makes ordering allergen-free easy, listing common allergens: dairy, egg, soy, wheat, glutens, peanuts, tree nuts, fish, and shellfish, along with sulfites, MSG, and yellow #5.  When ordering online, a gluten-free option is available to make choices clearer. Alex’s breakfast menu: scrambled eggs, home fries, sausage links, and seasonal fresh fruit dish

Dickey’s Barbecue Pit—This restaurant famous for its barbecued meat offers an easy-to-read chart with allergen information for eggs, dairy, soy, wheat, seafood, shellfish, peanuts, and tree nuts. Alex’s pick: chicken breast or pulled pork with cole slaw and barbecue beans

Panera Bread—This bakery restaurant used to offer a more detailed allergen menu; however, they now seem to have some concerns about being specific. Their website states: “At this time, this website does not identify allergens for added or removed ingredients.” Fortunately, we figured out what Alex can eat before they became so cautious. Alex’s choice: classic salad

Noodles and Company—In contrast to Panera, Noodles and Company has become more helpful to those with food allergies, offering gluten-free pasta as a substitution for their famous noodles. In addition, they offer an easy-to-read nutrition and allergen guide chart along with a nutrition sorter for various allergens: peanuts, tree nuts, soy, milk, eggs, fish, shellfish, and wheat/gluten. Alex’s favorites: Chinese chop salad minus wontons or Pad Thai

Chili’s—This family restaurant offers easy-to-read allergen menus online, categorized by the common allergens (eggs, milk, soy, peanuts, tree nuts, fish, shellfish, wheat/gluten). Alex’s favorite: classic sirloin without garlic butter, corn on the cob, and steamed broccoli

Fazoli’s—This Italian restaurant provides an ingredient statement online for items containing milk, egg, soy, wheat, peanuts, and tree nuts. However, one must then look up individual menu items to see what ingredients they contain, which is not user friendly. Alex’s choice: Italian house salad without cheese

Tomato Bar/Pizza Hut/Domino’s Pizza—These pizza places now offer gluten-free crusts, and cheese can be omitted to make the pizza gluten-free and dairy-free. Alex’s pick: gluten-free crust, no cheese, topped with Italian sausage and mushrooms

McDonald’s—This fast food place offers a very specific ingredients list, noting the allergens milk, soy, wheat, egg, and fish, but at 36 pages, it isn’t very user friendly. Alex’s choice: hamburgers minus the buns with a side salad or apple slices

Wendy’s—In contrast to McDonald’s, Wendy’s offers a nice easy-to-read chart online regarding nutrition information along with information about gluten and food allergies. Alex’s favorite: plain baked potato topped with chili

Burger King—This fast food restaurant provides a gluten-sensitivities list and an allergens guide for milk, wheat, egg, soy, fish, peanuts, and tree nuts. Alex’s choice: hamburger or Tendergrill chicken fillet (minus the bun) and French fries

Arby’s—This fast food restaurant known for their roast beef includes an eight-page online listing of ingredients and allergen information for milk, soy, egg, wheat, and fish. Alex’s favorite: Arby max roast beef sandwich (minus the bun) and potato cakes

Subway—This sandwich fast food restaurant offers a very nice online chart listing allergy and ingredient information. Alex’s choice: turkey breast (no bread), with lettuce, tomato, pickles, black olives, and green peppers

Although we have learned to cook foods at home that Alex can eat on his restrictive gluten-free and casein-free diet, it’s nice to be able to eat at restaurants or bring home carry-out food at times. Thankfully, many restaurants now understand the needs of their customers who have food allergies and provide them with detailed information so that they can choose from the menu and know that they will avoid those foods to which they are sensitive or allergic.

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

Sunday, March 8, 2015

Spring Forward

“Gonna look ahead, no turning back,
Live every day, give it all that I have,
Trust in someone bigger than me
Ever since the day that I believed
I am changed, and now I’m stronger.”
--“Something in the Water”

Today is one of Alex’s favorite days of the year: the springtime change in which we move the clocks forward one hour to begin Daylight Savings Time. All week long he has eagerly been asking about changing the clocks, and later he will happily make sure all of our clocks are precisely accurate for the new time. On this day when we “Spring Forward,” I can look back on the past week and see that Alex, too, is showing signs that he can spring forward, making great progress in many areas that have held him back.

While Alex has made progress over time in his expressive language, we have noted that his speech has especially improved lately. Listening carefully to what has been said on television or in conversation, he waits instead of interrupting and asks thoughtful and relevant questions. Often, he asks the meaning of words he has heard, and he listens closely as we provide him with examples and synonyms. In addition, he has been making comparisons of his own such as, “Temperatures are like the stock market; they go up and down.” In addition, Ed noted the other day that a big change for Alex is that he is not only asking questions but also speaking in complete sentences most of the time, which is a huge leap forward for him.

This week we took Alex to the dentist for his regular six month cleaning and check-up. We decided to take him to our family dentist for the first time instead of a pediatric specialist, as we have always done in the past. Because of the improvements he has made in his behavior, we felt that he could handle this change. Thankfully, he proved us right and was very cooperative at the dentist when he had his teeth cleaned and checked. In fact, I was amazed by how relaxed and calm he was while sitting in the dentist’s chair. Other than having the hygienist adjust the seat before Alex sat down because he doesn’t like the movement of the chair and having him wear sunglasses to shield his eyes from the bright light, he was a typical patient. We were so proud of how well he handled this new situation, and as an added bonus, they told us his teeth looked great.

In addition to adjusting to the new dentist, Alex’s music therapist is throwing new challenges at him because he believes Alex is quite capable. Although his therapist understands Alex’s need for routine, he also wants to make him more flexible. To this end, he brings different musical instruments for Alex to play each session, and this week, I noticed that instead of the familiar group of songs they usually do together, he had a whole new set of songs. Despite the changes, Alex adapted nicely and seemed to welcome the variety. Similarly, Alex has recently been much more flexible when it comes to going places. For quite a while, he enjoyed going places in the evening but was hesitant about going out during the day. Now, he’s ready and willing to go any place any time, which is a testimony to his new flexibility.

One of the new goals has been to make Alex more independent from Ed and me. Even though he is a young man, he still relies upon us to take care of many of his daily needs. This week, his computer teacher began the weaning process by having Ed stay out in the lobby during computer class instead of staying in the room with him. Fortunately, Alex adapted to this change quite well, and his teacher told Ed that Alex had done a “fantastic” job. Since he seemed to handle this situation well, this week we also left him with his respite caregiver for the first time. For the past four months, whenever his caregiver came to visit, I stayed in our home office and graded papers while they watched television and chatted in the family room. Because Alex seems very comfortable with her, I felt that the time had come where we could leave and know that he would be cooperative for her. Once again, he proved us right, as she told us that he was “perfect” while we were gone, enjoying a rare lunch date and giving Alex a chance to be independent from us.

One of the hardest things for Alex to learn has been patience; however, he has lately shown signs of mastering this valuable quality. His behavioral therapist commented to me on Friday that she has noticed how much more patient he has been lately. Previously, when he had to wait, he would often become anxious, repeatedly check his watch, and comment in frustration, “It’s taking too long!” Whenever we had to wait, we felt as though we had a ticking time bomb with us, worried that he would have a meltdown when he’d had enough of waiting. Yesterday, he demonstrated how well he’s learned patience as we were waiting quite a while before being seated at a busy restaurant. Even though the restaurant was quite crowded, he was excited about having breakfast with everyone from my side of the family (thirteen in all), and he had to wait for a table and for his food, he remained calm and content the entire time. Of course, we were very proud of how maturely he handled himself.

Looking back on recent events, Ed and I are delighted with the progress we are seeing Alex make, much of which seems somewhat sudden in nature, essentially his own version of “Spring Forward.” Although we have been working on many of these improvements for a while, we are thankful to God for these changes that are making life easier for Alex, and in turn for us. Consequently, we know how far he has come, and we look forward with anticipation to see all that the future holds for Alex.

“Not that I have already obtained all this, or have already arrived at my goal, but I press on to take hold of that for which Christ Jesus took hold of me. Brothers and sisters, I do not consider myself yet to have taken hold of it. But one thing I do: Forgetting what is behind and straining toward what is ahead, I press on toward the goal…” Philippians 3:12-14

Sunday, March 1, 2015

A Matter of Perception

Last week, a picture of a dress went viral on the Internet as a lively debate ensued in the social media as to the true colors of the dress: blue and black or white and gold. My seventh grade students enthusiastically defended their choices, and I was a little worried that my decision apparently mirrored that of notorious singers Justin Bieber and Kanye West. Quickly, the media published reports about the scientific basis explaining why people saw the dress differently. Essentially, the eyes and brain work together to determine color; however, light and perception play key roles in making the final decision. [To read an article explaining this phenomenon, please click here.] While I’m certain that dress is really blue with black trim, others are just as convinced that the dress is definitely white with gold trim. It’s a matter of perception, after all.

In mulling over this debate, I’ve been thinking about how autism could also be a matter of perception. While some characterize people with autism as having a lack of empathy, others have suggested that people with autism may be more empathetic than typical people are. Because people with autism may not react emotionally to certain situations, others perceive that they don’t feel the same emotions or maybe even don’t really care. However, some adults with autism who can verbalize their feelings have expressed that they become overwhelmed in certain situations and must shut down, making them appear emotionless or uncaring.

Similarly, people with autism may be thought to be of limited intelligence, especially since 40% of them do not speak. Since most of the testing methods used to assess intelligence focus upon language, evaluating true intelligence proves difficult. For example, two psychologists have assigned Alex an IQ of 70, which qualifies him for disability benefits by placing him in the mentally handicapped category. However, Alex can solve multi-digit math problems in his head more quickly and accurately than I can, and he taught himself to read at age two. Consequently, I don’t place much stock in standardized testing. Perhaps autism is a different intelligence that cannot be measured with traditional tools.

Yesterday, as I watched Alex thoroughly enjoying himself at a college basketball game, surrounded by noise, activity, and sensory stimuli that could easily overwhelm anyone, I often wondered what he was thinking at times. At one point, I watched his eyes gazing around the top of the gymnasium and carefully noting some details. Knowing his love of dates, I thought he might be reading the years of championships emblazoned on the banners hanging from the ceiling. A few minutes later, the mystery was solved when he told me, “Sixty-two.” Of course, I had no idea what he meant by that number, so I asked him what he’d been counting. “Lights, “ he proudly told me. For Alex, the world makes sense in numbers instead of words, and he takes control by taking inventory. Lately, we’ve had to move him along in stores when he suddenly finds objects that catch his eye, and he wants to count them. Like Raymond Babbitt in the movie Rain Man who counted toothpicks, telephone poles, and cards, Alex wants to count bricks in a wall, tiles on a floor, or lights on a ceiling. Most of us simply see the whole picture—a brick wall, a tile floor, a brightly lit room—but Alex notices all the small parts and puts them together because he perceives the world differently.

Besides counting the lights, Alex was also enthusiastic about seeing the team mascot walking around the gym. As the Crusader came closer to where we were sitting on the second row, Alex eagerly put up his hand to give the friendly mascot a “high five.” Unfortunately, by the time the Crusader walked to where we were sitting, a group of little kids came running to mob the mascot, standing in front of Alex and denying him the greeting he wanted. Patiently, he waited his turn for the high five, but the mascot was busy with the kids and never saw Alex. Although Alex was disappointed, he never stopped smiling, but he began to shake. I asked him if he was all right, concerned that he was upset, but he explained that he was excited. Even though he didn’t get his high five, he was happy to see the Crusader up close and content enough with that interaction. Clearly, he felt such great emotion that his body responded by shaking, which was probably caused by an adrenaline rush. He had just as much enthusiasm about meeting the Crusader as the little kids did, but he knew as an adult that he couldn’t push his way into the crowd and had to accept gracefully that he wouldn’t get the high five he wanted. Although Alex often seems to be distracted or even distant, he is actually engaged in the situation but dealing with the activity on his terms, which others may not perceive correctly.

While the blue/white dress debate illustrates differences in perception similar to those seen in attitudes toward autism, the attention focused on such a meaningless issue seems wasteful to me. Of course, theories about the attention this topic received also made the news: perhaps people focus on small things like the color of a dress to divert their attention from overwhelming and upsetting items in the news. [To read an article on this theory, please click here.]  While I wish autism would receive the attention and concern the color of the dress received last week, I suspect that autism has too many mysteries and problems to be as appealing as the less important news items featured last week. As I observe Alex, I realize that he copes with the world in his own way. Instead of talking about the dress colors, he counts lights and waits for mascots and finds joy even when things don’t turn out as he’d hoped. Some may see that as a weakness; I see that as a strength.

“Since ancient times no one has heard, no ear has perceived, no eye has seen any God besides You, who acts on behalf of those who wait for Him.” Isaiah 64:4

Sunday, February 22, 2015

Onward and Upward

This past week, we met with Alex’s support team for his quarterly meeting. Since he receives state disability services, these meetings are required every three months to monitor his progress, plan for the upcoming months, and discuss any concerns that have arisen since the last meeting. For these meetings, his case manager, behavioral therapist, music therapist, and a representative from the agency that provides respite care and day programs meet with us. Essentially, these meetings resemble annual case conferences for special needs students who have IEP’s.

Because Alex is an emancipated adult; that is, we have decided not to declare him legally incompetent at this time and are therefore not his legal guardians, his presence is required at the meetings. As his parents, Ed and I can advocate for him, but Alex ultimately can make decisions about his support program. Fortunately, he is quite content with his team of professionals and the work they are doing with him. Consequently, my main roles in these regular meetings is to play hostess since they meet in our home and to help Alex navigate the process, explaining what others are saying as needed and translating for him when his speech is difficult to understand. With several people in the room at the same time, he sometimes becomes confused as to whether a question is addressed to him or not. Sitting beside him, I often gently tap his leg to let him know that he is being questioned so that he realizes that he needs to provide an answer. At times, questions are directed to me, and I try to respond as clearly as possible to provide an accurate report of Alex’s current state.

To be honest, I felt a little disappointed right after the meeting concluded. Because Alex has made great progress in the past three months, adjusting amazingly well to his new computer class and making significant improvements in his behavior by showing more patience and flexibility as well as managing his anxiety through coping techniques, I anticipated that we would simply celebrate his achievements. While his therapists noted his improvements, they also focused on areas that still need improvement, namely his tendency to talk too softly, his need to be reminded to use manners by saying please and thank you, and his need to develop greater independence in daily living skills. While I value these skills, I’m delighted that he has overcome two huge hurdles that negatively impacted our lives and led to our getting services for him in the first place.

When Alex’s behavior plan was first written two and a half years ago, he desperately needed to improve three areas: physical aggression, property destruction/mishandling, and inappropriate social behaviors. Thanks to therapy, medication, and maturation, Alex has learned to handle his anxiety appropriately so that he doesn’t resort to aggression or throwing things for attention. This improvement has made our lives so much easier, not worrying that he might have an all-out meltdown. Also, his behavior improvements have permitted him to go more places in public because we don’t worry about him behaving badly. Essentially, our lives have changed so much for the better with the disappearance of the physical aggression and property destruction that we could be satisfied with just mastering those two areas.

However, we also know that Alex also needs to improve his social skills, which his behavior plan defines as not invading other people’s personal space, including not touching them or their belongings, covering his mouth when he coughs or sneezes, and not talking too quietly to be heard or not responding at all. Certainly, as he interacts with more people and goes out into the community more, these skills will serve him well. Yet, I thought after he learned to control his angry outbursts, we might enjoy a plateau period where we just rested a bit, grateful that our lives were finally peaceful. Instead, the meeting this week reminded me that we need to keep moving forward to help Alex fulfill his potential. Yes, he is much better than he was, but his therapists believe that he can continue to get even better and will push him to improve his social skills until he masters those, too. They reminded me that “good enough” is selling Alex short because he can be better than that.

As I reflected more on the meeting, I was able to get past focusing on the weaknesses they discussed and the work we still need to do as his support team and to hear why they believe he can overcome those issues that still linger. They describe him as “smart” and “capable”; they see beyond the typical autism behaviors of social impairment to what he can achieve. Also, I realize that when he masters all these goals, he will need new ones, and at some point, he may not need all the support he is currently receiving. As much as I’d like to rest on the peaceful plateau I imagined, I know that we need to keep moving onward and upward so that Alex can achieve what he is capable of doing.

Looking back, I can recall various tasks that seemed unending and perhaps even impossible. We wondered if Alex would ever become toilet trained, and eventually he did learn to go to the bathroom independently, which made our lives easier. We wondered if we would ever be able to have a conversation with him because his language skills were so weak, and now we can talk with him, despite some lingering speech issues, and find ourselves amused and amazed by what he tells us. We wondered if we would ever be able to take him out in public and trust that he would behave himself, and now we take him someplace nearly every day, not worried that he will misbehave and enjoy watching how happy it makes him to be out and about in the world. Consequently, I know now that Alex has great potential, and I need to be reminded that he can overcome these difficulties with time, patience, and support.

While I first thought his support team was not fully appreciating what Alex has accomplished recently, I can now recognize that they see him more objectively than I can. As his mother, I focus on what he has done, but his therapists are looking forward to what he can do. For years, Ed and I were unable to find professionals who could help Alex, and now we are blessed with a group who not only understand him as he is but also can envision what he can be with time and intervention. Working with them, we know that we will move onward and upward, not resting on what we’ve already accomplished, but knowing that Alex can, indeed, keep improving, master goals, and reach his full potential.

“Not that I have already obtained all this, or have already arrived at my goal, but I press on to take hold of that for which Christ Jesus took hold of me.” Philippians 3:12