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