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

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

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

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 14^th)?

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 Café 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