Sunday, July 5, 2015

Sound Sensitivity in Autism

 
Last week with the Fourth of July holiday approaching, various people asked me if fireworks bother Alex. Because so many people with autism have sound sensitivities, this was a very reasonable question. In fact, many children and adults with autism find certain noises quite disturbing and must cover their ears or wear noise-cancelling headphones in situations where loud noises are present. Fortunately, fireworks and other annoying sounds do not upset Alex, and I believe that a home therapy program we did with him when he was about five years old greatly helped address his sound sensitivity. As I listened to the teenage boys who live behind us setting off all kinds of fireworks last week, including throwing M-80 firecrackers in garbage cans that made our neighborhood sound like a war zone, I was thankful that Alex isn’t bothered by loud noises any more.

When Alex was little, his sensitivity to sound was one of our first clues that he had autism. As a baby, he would pick up his head when our relatively quiet furnace would come on, and he seemed to recognize the sound of our cars when one of us pulled into the driveway, showing joy that Mommy or Daddy had come home even before we walked in the door. In contrast, the sounds of the vacuum cleaner and hair dryer terrified him, sending him running away and crying. I remember once when he was a toddler that as he and I sat in the car waiting for Ed to scrape ice off the windshield, he was nearly hysterical, apparently upset by the scraping noise.

When I mentioned this sound sensitivity to his pediatrician, who was certain that Alex didn’t have autism and that I was just an overly concerned mother, he suggested that we take him to an audiologist to have musician’s earphones specially made for him to cancel out background noise. Knowing that he would outgrow these custom-made earphones quickly, spending hundreds of dollars on having them made struck me as a waste of money. Instead, I began looking into ways to treat his sound sensitivity, not just ways to block noise, realizing that he would often encounter surprising sounds and may not be prepared with earplugs, earphones, or headphones at all times.

My research led me to reading about auditory integration therapy, or AIT, developed by French ear, nose, and throat doctor Guy Berard in the 1950’s to address hearing sensitivities and imbalanced perception of sounds in the ears. AIT programs typically require twenty sessions of listening to specially modulated instrumental music with a variety of sound frequencies. These twenty sessions typically last thirty minutes each over ten days with two sessions per day that are at least three hours apart. Generally AIT takes place over two weeks––five weekdays followed by a weekend off and resumed the following five weekdays. In addition, AIT requires that the client wear headphones for the thirty-minute sessions and basically do nothing except listen to the music.

After reading that some children with autism respond very well to AIT, I considered whether this therapy might benefit Alex. However, I had some doubts as to whether this treatment had any merit because its methods seemed somewhat suspicious to me. Moreover, the cost of the treatment––typically $1000-$2000––was quite expensive. If AIT worked, it certainly would have been worth the money, but I was still skeptical. Another concern I had was that Alex’s sensitivity to touch was even greater than his sensitivity to sound, and I could not imagine that he would be able to wear headphones for the ten total hours he would be required to wear them for the AIT sessions.

Consequently, I began seeking alternatives and found the EASe CD, which was recommended by another autism mom. EASe, which stands for electronic auditory stimulation effect, was created in 1995 to help address sensory processing issues in children with autism and others with sensory difficulties. Essentially, the program works very similarly to AIT in that the person listens to instrumental music modulated with various sound frequencies for thirty-minute sessions twice a day for ten days. Unlike AIT, however, the creators of EASe seemed to understand that some children would not be able to use headphones and suggested that they could listen to the CD on a stereo with good speakers instead. In addition, the cost of this in-home program, which offered great convenience, was only about $60 to purchase the EASe CD that could be used over and over. After watching Alex cover his ears every time a loud appliance was turned on, I decided it was time to try the EASe CD and ordered a copy.

That summer, I faithfully followed the prescribed schedule of twenty half-hour sessions over ten days, playing the CD that sounded like pleasant but slightly strange elevator music over our stereo speakers with Alex, who was remarkably cooperative about listening. I can still picture him at age five, sitting in our living room, contentedly rocking in our La-Z Boy rocker recliner as he listened to the EASe CD. While I listened along with him, I still had my doubts as to the effectiveness of this therapy, but we soon noticed that he stopped covering his ears when he heard loud noises, and he no longer became upset by the sounds of noisy electrical devices. Over time, his sensitivity to sounds seemed to disappear completely, and I credit the EASe CD with that positive outcome.

Recently, I checked online to see if EASe was still making CDs and discovered that they have expanded their line to several different music CDs from the original one we first purchased in the 1990’s, and they also have also developed games to address sound sensitivity. Moreover, they offer a free download of their EASe music CD, which seems like a great way for parents to try the program and see if their children might benefit. In addition, their website clearly explains how the program works, answers many questions parents might have, and offers testimonials of customers who have benefited from the program. [To check out the EASe website, please click here.]

Even eighteen years later, we still see the benefits of the EASe CD in that Alex handles noise amazingly well, never covering his ears and never needing to wear headphones in noisy situations. We take Alex to concerts, sporting events, and even fireworks displays, and he enjoys himself thoroughly, never bothered by the loud noises that once upset him greatly. With the various issues autism presents that makes Alex’s life difficult, we are thankful that we found a therapy that allowed God to heal him so that he could enjoy typical family outings without being bothered by sounds. Now, that is something definitely worth celebrating with fireworks!

“But Moses replied, ‘No, it’s not the shout of victory nor the wailing of defeat. I hear the sound of a celebration.’” Exodus 32:18

Sunday, June 28, 2015

Alex Asks

 
As autism parents, Ed and I are blessed that Alex, unlike many people with autism, can speak. Although speaking is difficult for him both in terms of generating what he wants to say and in terms of articulation, or speaking clearly, he can express himself enough that we can understand what he wants to convey verbally. For many years he struggled to construct questions, yet we knew he wanted to ask about the things he had seen and heard. Even though we modeled for him how to ask questions and taught him the W’s (Who, What, When, Where, and Why), he could not put all the pieces together to ask the questions he had in mind. Instead, he would simply say a key word in a questioning tone of voice so that we knew he wanted to know something more about it. However, over time he has thankfully developed the ability to ask us questions so that we get glimpses into what is going on in his mind, and we recognize that the things that sometimes seem rather superficial are actually quite deep.

Since we gave him an iPad Mini several months ago, Alex asks us fewer questions because he can ask Google for information he thinks we don’t know. To make sure he is visiting appropriate websites, Ed and I regularly check his search history to see what topics he has Googled. Not only are we relieved that he consistently uses safe websites, but we are also fascinated when we see what questions he has asked Google. For example, he asked Google this week, “How much does a bathtub weigh?” Since he loves numbers and baths, I suppose this question shouldn’t surprise us. For another search this week, he asked, “How many children are there around the whole world?” Additionally, he asked, “How many home runs does Alex Rodriguez have?” The most unusual topics this week were “Rolex watches” and “Afro wigs”; I’d love to know what triggered his curiosity about these two topics.

Looking down through the Google search history list, we can see that he is most interested in learning about people, and as we know, he wants statistics about them so that he can categorize them. This week he searched for ages, heights, and weights of former baseball player Mark McGuire, celebrity chef Emeril Lagasse, Wheel of Fortune’s Vanna White, newscaster Jim Lehrer, and singer Bob Dylan. The celebrity who seemed to fascinate him most, however, is Suzanne Whang, who narrates several shows on HGTV. He wanted to know her birthday and weight, but clearly what he finds most interesting about her is her voice. Specifically, he had Googled “Suzanne Whang’s voice,” “Listen to Suzanne Whang’s voice” and “Suzanne Whang has got a soothing voice.” Now we understand why he has shown an enthusiasm for watching home improvement shows lately. He’s really not watching them as much as he’s listening for Suzanne’s soothing voice.

While Google helps Alex answer trivia questions about celebrities he likes, he still relies upon Ed and me to answer other questions. Not long ago as we were saying bedtime prayers together and naming off all the people whom he wants God to bless––a list that seems to grow longer every week––I asked him if we’d missed anyone. He asked me, “How about Dr. [name of psychiatrist we saw only once eight years ago]?” At first I was surprised that he even remembered this doctor because our encounter was brief and long ago. Also, I was totally unimpressed with this doctor because he was rather rude and very unhelpful, which is why we never saw him again. Moreover, he basically ignored Alex during the appointment, so I have no idea why he would have made an impression on Alex. However, Alex remembered him and wanted to pray for him, and so the psychiatrist we saw only once has become a regular in our nightly “God bless” list. Somehow Alex believes this doctor needs blessings, and the more I think about it, Alex is absolutely right. Even though the doctor showed little regard for Alex, Alex didn’t take offense and showed the proper attitude by repaying rudeness with kindness, which makes me proud as his mother.

Recently Alex asked me an interesting question that also showed his compassion toward others. Out of the blue, he asked me if he could learn sign language. When he was in special education preschool, sign language was part of the curriculum to help the students with speech delays learn an alternative way to communicate. Because Alex also has fine motor delays, he could not make his hands do the symbols, and he really wasn’t interested in learning how to use sign language. Nearly twenty years later, he suddenly wants to learn sign language, so I asked him why. Immediately he explained that he wanted to be able to talk to another young man in his day program who is hearing impaired and has limited speech. The thoughtfulness behind his motivation made me proud of the young man he has become. Even though autism impairs his social skills and the motor skills in his hands, Alex wants to be able to communicate with a friend and is willing to do the work needed to accomplish this goal. Consequently, I taught him how to finger spell his friend’s name in sign language, and even though Alex’s fingers struggled to make the letters correctly, he smiled as he kept trying.

Because words come easily for me, I have often spoken for Alex, knowing that he struggles to express his thoughts and feelings. However, I realize that he has a great deal to share with the world, and I need to encourage him to allow his voice to be heard. Clearly, he has shown independence by developing his typing and written language skills so that he can discover more about topics of interest to him. What pleases us even more, though, is that he is not only improving his speech but also learning to convey his compassion for others by learning to communicate with them in ways that are difficult for him but are comfortable for them and by praying for people he believes deserve God’s blessings. And so, I conclude with a question of my own: Is it any wonder that my son makes me so proud?

“And without question, the person who has the power to give a blessing is greater than the one who is blessed.” Hebrews 7:7

Sunday, June 21, 2015

Autism Dad

 
When Ed envisioned fatherhood, I have no doubt that he never pictured himself as being an autism dad. Nonetheless, he has not only accepted the additional responsibilities and concerns of raising a child with autism, but he has also become more patient and more devoted because of Alex’s special needs. Unlike some fathers who flee when the terrain becomes rocky, Ed has remained steadfast as we have worked together cooperatively to parent Alex the best way we know how. Today on Father’s Day, I would like to give Alex’s dad proper credit for just a few of the many things he does to make Alex’s life––and therefore, my life––better, or in the affirming words of Alex, “good and special.”

1. He has created a younger version of himself in Alex. As Alex grows older, he has become his dad’s twin who loves math, seafood, and Bob Dylan—all things that I despise. Sometimes, when I hear the caterwauling of Bob’s voice coming from the basement while they are listening to him “sing,” I suspect that they are enjoying the thought of annoying me by turning up the volume so that I must listen, as well. While I don’t dare venture any closer when they are listening to music, I do enjoy observing the two of them as they watch sports together on television. Although Alex enjoys the numerical aspects of sports, such as statistics, I think he enjoys spending time with his dad even more. Their shared contentment makes me content—even when I don’t agree with their taste in music.

2. He takes great pride in all of Alex’s accomplishments, no matter how small they may seem. Having gone through some very difficult stages with Alex, we are grateful when things go smoothly. Whenever we take Alex to a restaurant or a family gathering, we are amazed how well Alex behaves now, and Ed always praises Alex and tells him how much fun going places with him is. Also, Ed will later comment to me about how good Alex’s behavior was and about how he appreciates that we can relax when we take him places because he is so good now. In addition, Ed’s pride in Alex shines through when he tells me about his experiences dropping off and picking up Alex at his day program, which is one of the responsibilities he has gladly assumed. Although we were a little nervous about how Alex would do in the day program, Ed has been pleased to share with me the positive response Alex has received from the staff and the other clients.

3. He has become amazingly patient. Because autism has presented many obstacles for Alex, mastering skills often takes a long time. Nonetheless, Ed encourages him constantly with praise and convinces Alex that he can do tasks that seem too hard for him. Although I tend to want to do things for Alex because I don’t want him to be frustrated, Ed knows that Alex must do things for himself and coaches him patiently so that he can feel the sense of accomplishment of doing something himself, even if it takes some time. In addition, Ed gently and patiently encourages Alex to improve, reminding him to stand up straight with his hands at his sides and encouraging him to speak louder so that we can hear what he has to say. Sometimes figuring out what Alex is saying is like playing a game where we ask him, “Where did you see that?” “What letter does it start with?” “Can you spell that?” and “What’s the most important word in that sentence?” to see if we can use clues to figure out what he’s trying to tell us. Because Ed never gives up on trying to hear what Alex is trying to tell him, Alex patiently tries to explain to us what he’s saying so that we can understand him.

4. He supports me, no matter what. Through the years, I have many times become excited about some new autism research and methods I have found, and Ed never dampens my enthusiasm for trying something new. Although he asks questions, I know that he shows the wisdom to be led by his head when I tend to be led by my heart, and I know that he trusts my judgment if I truly believe that we need to try something new with Alex. Even though he doesn’t find medical research as fascinating as I do, he patiently listens as I happily rattle off the details. Last week, he even watched an hour webinar on his own volition given by a doctor whom he knows I admire and then told me about a question and answer session I had not yet seen that we watched together and discussed. To know that Ed always believes that I am doing what’s best for Alex has given me confidence to try new things that I would not have been brave enough to try on my own. For that trust, I will always be grateful.

5. He loves Alex as much as I do. Because Alex requires so much time, energy, and attention, he must come first in our lives. Although marriage counselors say that parents must put their spouses first instead of the children to keep a marriage strong, this prioritizing does not work when the children have special needs. Knowing that Ed is as devoted to Alex as I am, I know that he is not jealous of the all-consuming love I have for him because I know he feels the same way. By the same token, I understand that he loves Alex unconditionally, and that comforts me. Moreover, our shared devotion to Alex is precisely what has made our marriage strong: we share the same goal to provide Alex with a happy life in which he can reach his full potential.

Happy Father’s Day to all the dads, especially the autism dads whose lives didn’t turn out the way they’d planned, but whose children blessed them in ways they’d never predicted. Every day I thank God for Ed who blesses Alex and me with his unconditional love for both of us. “There ain’t nothing that I wouldn’t do, go to the ends of the Earth for you, make you happy, make your dreams come true, to make you feel my love.”––Bob Dylan

“My children, listen when your father corrects you. Pay attention and learn good judgment, for I am giving you good guidance. Don’t turn away from my instructions.” Proverbs 4:1-2

Sunday, June 14, 2015

New Things

 
This past week was the first week of my summer vacation from school, but it was a busy week filled with activity and new things. Thankfully, Alex handled the hectic schedule and transitions amazingly well, which shows the progress he’s made in being more flexible and willing to try new things.

On Monday, we had an appointment with his psychiatric nurse practitioner who prescribes his medications for OCD and anxiety. This was the second time that we had visited her new office, which is conveniently located less than ten minutes from our house. Previously, we had to travel about thirty minutes to her old office, and we’re thankful that our travel time is much less now, even though we only need to see her every six months.

For this appointment, Alex did an especially good job of answering her questions instead of relying on us to answer for him. We were also pleased to tell her about the additional services that Alex receives since she last saw him in December. She had good news to share, as well, telling us that all of Alex’s blood tests looked very good. Since his lab work indicates normal levels and he is doing so well, she decided to not make any changes in his medication. After we thanked her and left her office, we took Alex to Target to pick out the things he would need for his next adventure on Tuesday.

“Behold, I will do a new thing; now it shall spring forth; shall ye not know it? I will even make a way in the wilderness, and rivers in the desert.” Isaiah 43:19 KJV

On Tuesday, Alex not only had computer class at his day program for adults with disabilities, but he also stayed for lunch hour there with his peers for the first time, something he’d been eagerly anticipating for weeks. With his brand new lunch bag that he chose himself, he headed off for class and lunch with friends. When Ed went to pick him up afterward, they told us that he had done very well but was a little shaky, which can happen for various reasons.

After we questioned him a bit, he told us that he was a little nervous that we might not pick him up on time after lunch. Considering that he’s used to being around us most of the time, his separation anxiety was understandable. We reassured him that we will always pick him up on time, and he seemed satisfied. During his behavioral therapy session that afternoon, his therapist also assured him that he didn’t need to worry about being picked up after lunch because he could depend on us.

“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 43:19 ESV

On Wednesday, his caretaker Jessica came to, as she says, “hang out with” Alex in the afternoon. Ed and I had planned to go out to lunch while she was there, but Alex seemed to be a little off. In fact, he told me that if we left, he was going to be bad for Jessica. Since that didn’t sound promising, I told Jessica that we’d stay home since I didn’t trust him. However, Jessica stepped up, assertively told Alex that he was going to behave while we were gone, and encouraged us to go, insisting that they would be fine. Since I still had doubts, I told her to call me on my cell phone if she needed anything, and I kept checking it throughout our lunch. However, she never called, and when we came home, she told us that Alex had been perfect and had not given her a bit of trouble. This was the first time that I had left him when I was concerned he might not behave, but Jessica’s no-nonsense attitude showed Alex that she was boss, and he complied.

“See, I will do a new thing, now it shall spring forth; shall you not be aware of it? I will even make a way in the wilderness and rivers in the desert.” Isaiah 43:19 MEV

On Thursday, Alex once again had computer class and lunch at his day program, and he once again got along very well. In fact, the supervisor told Ed that after lunch, she had Alex help clean up by washing dishes, wiping off tables, and running the vacuum cleaner. Not only was he comfortable having lunch there on just his second time, but he was also practicing daily living skills by cleaning up afterward. He seemed pretty proud of himself when he told us what he had done while he was there.

That afternoon, we had another new thing: instead of having his music therapist come to our home for his session, we went to the music therapist’s new office here in town for the first time. Even though we had prepared him for this change, his music therapist and I anticipated that he might need some transition time to adjust to the new setting. However, Alex sat right down at the keyboard with a huge smile on his face, ready to start the session. Afterward, his therapist told me that he had done a terrific job and didn’t seem to mind being in a new place at all. This new flexibility on Alex’s part amazes all of us who know him well.

“See, I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the wilderness and streams in the wasteland.” Isaiah 43:19 NIV

On Friday morning, we took Alex to his new doctor for a follow-up visit since he last saw her for the first time in the fall. At that visit, he was pretty edgy and didn’t seem comfortable in the new office. However, this time he was calm and pleasant, and he answered the doctor’s questions nicely. Because he has yeast overgrowth, thrush, in his mouth again, we’re going to treat him with antifungal medication, and we’re going to try vitamin B12 shots for a few months to treat his slight anemia. Even though we have done these treatments before, doing them with a new doctor feels different. However, we like her very much because she is kind to Alex and takes our concerns seriously. We pray that she will help him continue to heal.

“Be alert, be present, I’m about to do something brand-new. It’s bursting out. Don’t you see it? There it is! I’m making a road through the desert, rivers in the badlands.” Isaiah 43:19 MSG

Yesterday we started Alex on a new supplement to help heal his gut and boost his immunity. After listening to an online lecture featuring a doctor who specializes in internal medicine and wellness, I found his explanation of inflammation and its connection to disease logical and fascinating. Consequently, I decided to try his recommended protocol for Alex in hopes that we can eradicate the stubborn yeast infections that have plagued him for more than three years. We pray that this new method will bring healing not just to Alex but also to others with autism. As someone who does not like change, I felt a bit unnerved as this week of new things shifted us out of our comfortable rut. Nonetheless, I have faith and hope that God is making the paths out of the autism wilderness, desert,  wasteland, and badlands, and He is taking Alex where he needs to go. Behold!

“For I am about to do something new. See, I have already begun! Do you not see it? I will make a pathway through the wilderness. I will create rivers in the dry wasteland.” Isaiah 43:19 NLT

Sunday, June 7, 2015

Little Things Mean a Lot

 
My school year ended on Friday with a teachers’ work day in which we completed our paperwork for the year and packed up our classrooms for the summer. Like our students, we also spent time socializing to make the work more pleasant. As I was visiting with my friend and colleague Melissa, our friend and colleague Justin stopped by to ask where the old textbooks should be taken for recycling. Knowing that Alex would love to have an old science textbook to read, I asked Justin if he could put one aside for Alex. He assured me that he would, and then Melissa asked if Alex would also like to have an old geography textbook, which I knew he’d be happy to have. As I was getting the geography book, Justin returned with not one but four old science textbooks in excellent condition. My friends’ thoughtfulness not only delighted Alex, who was thrilled to have new books to read for the summer, but their kindness also blessed me in that they were doing something nice for my son. While both of them shrugged it off as no big deal, this small gesture meant a great deal to Alex and to me. Indeed, as the old saying goes, “Little things mean a lot.”

Later that day, I received a Facebook invitation from an autism mom friend to a page called “Cards for Trent.” Thanks to Facebook, many autism parents in our area have been able to get to know each other and share information. In this instance, a family friend had made a request that people send graduation cards to a young man with autism. As she explained, Trent has never had a birthday party and will not be having a graduation party and he never asks for much. She went on to say, “He doesn’t have any friends which is ok with him. He loves receiving mail and checks his mailbox everyday hoping there is something in there for him.” With this in mind, she requested that people send him cards congratulating him on his graduation from high school because it would “help bring him some happiness.”

After reading this heartfelt request, I was deeply touched because, like Trent, Alex and other young adults with autism often lack the social skills needed to have friends. Fortunately, Alex doesn’t really seem to notice because he considers our family, my friends who have been kind to him, and his therapists to be his friends. For him, that’s enough. However, knowing how much small acts of kindness mean to Alex, I copied down Trent’s address and sent him a graduation card the next day. That day, his family posted a picture on Facebook of his sister holding a big stack of cards they had received, and I’m sure they were grateful for the kindness of people who had reached out to their son. I hope that these cards make their son as happy as Alex is when he receives cards in the mail. In this age of convenient e-mail and text messages, we sometimes forget that sending a card in the mail can mean much more. For example, every year my dear friend Sharon always sends Alex a birthday card in which she writes a personal message to him and signs it, “Your friend, Sharon.” Alex looks forward to receiving his card from Sharon every year, and he often carries it around the house with him. Little things mean a lot.

A quick Google search of ways to help parents of children with autism will bring up links to lists of suggestions of what to do, what not to do, what to say, and what not to say. For those who want to help but are unsure of how their offers might be accepted, I would suggest this: send the child/adult with autism a card in the mail to let them know you are thinking of them, especially for a milestone—birthday, graduation, holiday, etc. We have been blessed that Alex has various people who remember him with cards: my parents who send him cards for each holiday along with some spending money, my sister who makes special mathematically themed cards for him, Alex’s Aunt Pat who sends cards for holidays and includes gluten-free and dairy-free treats, Alex’s Aunt Babs who sends him postcards from the places she’s traveled, and other family and friends who reach out to him in thoughtful ways. Even though Alex lacks the language skills to express his appreciation, I see how his eyes twinkle and his smile spreads across his face when he realizes that someone cared enough to send him a little something to brighten his day. As his mother, those acts of kindness bless me, as well.

Last week, we were at the grocery store looking at a display of the Coke bottles that say, “Share a Coke with” followed by a variety of first names. Alex enjoyed looking through these bottles and grinned whenever he recognized the names of family, people who work with him, and family friends.  Although he doesn’t express affection easily, these people mean a great deal to him. I know this because he names all of them in his prayers he recites with me every night before he goes to sleep. The next day, he asked me if there were any bottles that said, “Share a Coke with God.” I told him I didn’t think so, but I thought that was a really good idea. Whenever I feel wistful that Alex doesn’t have friends like most people his age, I remember that Alex doesn’t feel that way. He knows that God is his best friend, and he cherishes those who have been kind to him, even in small ways that would seem rather insignificant to most people. Somehow I think God would enjoy sharing a Coke with Alex, who sees the good in people and shows his appreciation by asking God to bless them every night. What more could anyone want in a friend?

“If your gift is to encourage others, be encouraging. If it is giving, give generously. If God has given you leadership ability, take the responsibility seriously. And if you have a gift for showing kindness to others, do it gladly.” Romans 12:8

Sunday, May 31, 2015

Commencement

 
As another school year comes to a close, those of us who are teachers try to impart some final words of wisdom to our students before they leave our classes, hoping they may remember something useful from the time they spent with us. Traditionally, this time of year brings graduations and graduation speakers, who, like teachers, offer platitudes to young people going out into “the real world.” While graduation seems like the celebration of the end, these ceremonies known as commencement actually signify the beginning.

Around the country, universities invite various noted celebrities, politicians, and alumni to speak at their commencement ceremonies to give advice to the graduates. Some of these famous people seem to view themselves as experts on life, yet one might question their true expertise. Others offer wisdom notable enough to be quoted in the media. For example, the following quotes were made recently during commencement addresses:

Academy Award winning actor Matthew McConaughey at University of Houston: “Do not fall into the entitlement trap of feeling like victim. You are not. Get over it and get on with it.”

Musician Jon Bon Jovi at Rutgers University: “As the night ignites the day, go make some memories along the way.”

Former President George W. Bush at Southern Methodist University: “You can be hopeful because there is a loving God.”

These comments intended to enlighten young people were similar to those I read last night in a list of one hundred tips for life supposedly created by a high school economics teacher for his students, entitled, “An Econ Teacher Gave His Senior High School Students His Personal List Of Wisest Words…And They Make a Lot of Sense.” [To read this list, please click here.]  Among these one hundred helpful suggestions, I found the following three especially useful:

#71 “If you don’t understand, ask before it’s too late.”

#75 “Keep your word.”

#90 “Make the little things count.”

After reading these commencement speeches and the teacher’s tips, I considered the value of the advice given. Is the purpose of the advice really intended to help others––as I truly believe most advice is given in that spirit, or is it to make oneself seem superior to others? As I read many articles written by parents of children with autism, I’m sometimes perplexed by those who assert themselves as experts, especially when their children are quite young. After being an autism mom for nearly twenty-three and a half years, I have learned from many experiences. However, one of the most important things I’ve learned is that I am still learning something new every day. Certainly, I’m no expert, but I do like to share what I have learned along the way, in hopes that our experiences may be of some help to others, just the way I like to share a good recipe for others to enjoy. With that disclaimer in mind, I would like to offer my fifteen for ’15––some things I’ve learned from being an autism mom.

Begin one new thing (supplement, therapy, method) at a time so that you know what to keep doing and what to stop immediately.

Don’t fret. This annoying phase will pass and be replaced by an equally annoying one.

Focus on your child’s strengths, for those will be needed to overcome the weaknesses.
Ignore rude comment by those who do not understand. In the words of my wise friend, “Smile and think, it sucks to be them.”

Find a doctor who listens. If your doctor doesn’t really listen, find another.

In the words of Barney the Purple Dinosaur, “Please and thank you are the magic words.” Expressing gratitude not only makes you feel good, but good manners also make people want to work with you and your child.

Trust your gut as a parent. Instincts are God’s way of telling you which way to go.

When you don’t know what to do, follow the insightful words of my son, “Wait and see!”

Placing duct tape over the speaker of noisy toys muffles them to a comfortable decibel level. Duct tape also nicely secures objects to prevent them from being thrown.

Praise proves productive. Compliments instill pride and give impetus to keep trying.

Mr. Clean Magic Erasers can magically remove nearly anything a child’s fingers leave behind on a wall, door, or woodwork.

Remember the words of the Roman poet Virgil: “Omnia vincit amor”­­––“Love conquers all.”
As Christopher Robin told Winnie the Pooh, “You’re braver than you believe, stronger than you seem, and smarter than you think.”

Pray hard. Have faith. Trust God. Remain hopeful.

And so, as another school year ends, I am thankful for my students who were willing to learn from me and who were willing to teach me. Most of all, I’m proud and grateful that my favorite student, Alex, maintains a love of learning and a willingness to keep improving his skills, beginning each new task with enthusiasm. No teacher could ask for more than that.

“Intelligent people are always ready to learn. Their ears are open for knowledge.” Proverbs 18:15

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

Conversation

 
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