Sunday, August 26, 2012

Autism, Mutations, and Hot Sauce

Since Alex was diagnosed with autism several years ago, I have followed autism research and reports in the news faithfully. This week, two news stories reported in the media caught my attention, but for different reasons. One story proposed a new possible cause of autism based upon research in Iceland:  older fathers are more likely to produce children with autism. [A link to this news report can be accessed by clicking here.] The researchers noted that DNA mutations occur over time; therefore, older fathers may produce sperm with genetic flaws that can cause autism and schizophrenia. One scientist suggested that the increase in autism rates could be a result of more men having children later in life, thereby passing along their defective genetic material. Since mothers have long been the targets of autism causation, having fathers blamed this round should come as a relief. From Bruno Bettelheim’s ridiculous theory that cold, unfeeling “refrigerator” mothers were to blame for their children with autism having difficulties with social interaction to more recent studies that accuse mothers of children with autism of not taking their prenatal vitamins or wearing nail polish or whatever else these witch hunts can find, we moms apparently got what we deserved when our children were diagnosed with autism. When Alex was born, Ed had recently turned 40; according to the research, he may have had as many as 65 mutations. I guess that takes me off the hook. However, I’m still not buying that genetics primarily determine autism; I believe—as many autism parents do—that environmental factors play a much greater role in autism than many in the medical field want to admit.

While the new report blaming autism fathers made me shake my head in disbelief, another story about a teacher being mean to a child with autism infuriated me. When Alex was in preschool, his teacher decided to keep him restrained in a seat belt chair instead of telling him to sit down because it was “easier.” This led to our decision to home school him, especially since she believed her actions were justified. Stories of teachers bullying children with autism are far too common, and some people simply have no business working with these kids, as evidenced by a news story out of Kissimmee, Florida, this week. [To read this news story, click here.]

Apparently, teacher Lillian Gomez decided that the best way to make her kindergarten student with autism stop eating crayons was to put hot sauce on them. Clearly, she has no concept of sensory issues that children with autism have, such as the need for oral stimulation that leads them to chew on objects. I know this because Alex chewed on his shirt collars, toys, and anything else he could get his hands and teeth on. We solved this problem by providing him with a “chewy,” rubber therapy tubing that he could gnaw on instead of objects to satisfy his need to chew. Not only did Ms. Gomez put hot sauce on this child’s crayons, she clearly premeditated her actions by soaking them for days in the hot sauce. Obviously, this was not a knee-jerk reaction by an overly stressed teacher; she knew what she was doing.

Wisely, her school district fired her last February for her cruel and unprofessional behavior. Since then, she has been trying to get her job back while her lawyer claimed that she was trying to help her student. He is quoted as saying, "I think she made a bad judgment in the way she went about it," he said. "But her purpose was good." Since when is using a painful aversive, such as hot sauce especially on a child who is likely hypersensitive to such a potential sensory overload stimulus, a good thing? Unfortunately, a judge sympathized with this teacher, condoning her bad behavior, and recommended the school district rehire her. Ultimately, the decision to reinstate her lies in the hands of the school board, whom I hope consider how they would feel if she treated their children the same way before they make their decision about allowing her to work with children again, especially children with special needs, who should be protected, instead of punished for behavior they cannot help.

To add insult to injury, a blog entry on The Stir this week also supported the teacher’s actions. [To read this entry, click here.] In her article “Teacher Who Soaked Autistic Boy's Crayons in Hot Sauce Shouldn't Be Fired,” Julie Ryan Evans asserts that the teacher made a bad choice but doesn’t think she should lose her job. Ms. Evans minimizes the effects of the teacher’s actions upon her student, asserting, “Assuming she just soaked the crayons so that the boy would get a little spicy reminder to keep them out of his mouth, however, doesn't outrage me so much. Were they model teaching practices? Certainly not, but as far as I can tell neither were done out of anything but good intentions.” A “little spicy reminder”? “Good intentions”? Give me a break! I wonder how Ms. Evans would feel if a teacher deliberately put hot sauce on her child’s crayons. Perhaps as an autism mom, I’m overly protective; we moms of children who cannot speak for themselves must speak for them. Certainly, working with children with autism requires understanding and patience that few possess. Those who cannot handle the stress should not be working with these children, and I’d be happy to give them a “little spicy reminder” if they need to know what kinds of teaching methods are not helpful. Our kids with autism deserve much better than teachers like Lillian Gomez, and school districts must protect special needs children from those who have no business teaching them.

“The Lord says, "I will rescue those who love me. I will protect those who trust in my name.” Psalm 91:14

Sunday, August 19, 2012

Alex's Four S's

As kids around the country head back to school this month to learn the traditional “3 R’s—reading, ‘ritin’, and ‘rithmetic,” Alex has instead been focusing upon 4 S’s. In past blog entries, I have described how he goes through phases where certain topics and activities hold great interest—even to the point of obsession—for him. Sometimes these interests are ones he rediscovers after taking a break from them for several months, even years, which brings us to our first S: Seuss. Lately, Alex has been asking me “to visit” him, which means he likes for me to hang out in his room. Since conversation isn’t one of his strengths, he has decided that the best way for us to visit is for me to read aloud to him, which is reminiscent of when he was little and liked me to read to him. Although Alex taught himself to read by the age of three, which was part of his hyperlexia, or precocious reading skills, he enjoyed having me read to him even though he could read to himself. Part of this nostalgic recent activity has been his choice of reading material—Dr. Seuss. Pulling four of Dr. Seuss’s best books from Alex’s childhood library, he has asked me to read The Foot Book, The Cat in the Hat, Dr. Seuss’s ABC, and my personal favorite, Green Eggs and Ham. While I read the familiar rhymes and funny lines, Alex grins and seems to enjoy revisiting these old stories. I have to admit, I enjoy reading them as much as he likes to hear them, so this is a nice way to spend my “visits” with Alex.

Another current interest for Alex is also a rediscovery: sunrises and sunsets. Since he was little, weather has fascinated Alex, and at one point he told us he wanted to be a meteorologist when he grew up. Also, he has always been interested in time, so the marking of time by sunrises and sunsets naturally interests him. This past week, he has been asking me to check online the times of sunrise and sunset for each day, and he has been looking for patterns as far as how the days grow shorter over time. Yesterday, I reminded him that The Old Farmer’s Almanac, whose new annual editions he receives every year for Christmas because it is one of his favorite reference books, contains a great deal of information about sunrises and sunsets. After I handed him a recent edition of the almanac, he happily began studying when sunrises and sunsets fall on various dates of the year.

Unlike Dr. Seuss and the movement of the sun, which are rediscovered joys for Alex, a new obsession for him is showers. While Alex has always liked taking baths and seems to find them calming, taking showers is a new experience that he looks forward to every day. Because Alex didn’t like getting water in his eyes, we never had him take showers at home, fearing he might get upset if the water sprayed his eyes, and just had him take baths instead. However, when he was in the hospital, his only option for bathing was to take showers. At first, he was quite tentative, as we would have anticipated, putting only a leg and an arm in the shower. With time, he was able to put his entire body in the shower, overcoming his fears and actually enjoying the shower. Now, as soon as he rolls out of bed every morning, he asks us when “shower time” is, even though he knows that we follow a scheduled 7:00 in the evening shower time. Throughout the day, he’ll ask us repeatedly when shower time is or how long it will be until he takes a shower. While it might seem easier to allow him to take his shower earlier in the day, we know that showering seems to be the highlight of his day and prefer that he looks forward to this activity he anticipates so eagerly.

Another new interest for Alex is the red Solo cup, and we can blame country singer Toby Keith for this. [Click here to see Toby Keith singing his popular tune “Red Solo Cup.”] A country music fan, Alex especially likes country songs that are funny, such as Alan Jackson’s “It’s Five O’Clock Somewhere” and Garth Brooks’ “Friends in Low Places,” so Toby Keith’s “Red Solo Cup” fits right into Alex’s taste for clever songs about drinking.  After listening to “Red Solo Cup” dozens of times, Alex decided that he, too, would like to drink out of a red Solo cup. Unfortunately for him, he can’t drink beer, and we don’t have Solo cups of any color. Fortunately for me, I was able to convince him that a red plastic cup we have was a Solo cup and that apple juice would go well in that cup. Whether he was humoring me or really did believe me, he has been enjoying apple juice in his pseudo red Solo cup, which he asks for by name. I suspect that my persuasive powers are not as great, though, as those as the lyrics of the song: “Red Solo cup, you’re more than just plastic. You’re more than amazing; you’re more than fantastic. And believe me, I’m not the least bit sarcastic when I look at you and say, 'Red Solo cup, you’re not just a cup. You’re my friend. Thank you for being my friend.'” If that plastic cup makes him happy, I’m delighted.

Although I’m sure Alex’s somewhat unusual current interests will likely fade, as all phases do, I’m glad that he has found simple things that bring him joy. Until he gets tired of them, I’ll keep reading aloud Dr. Seuss books, looking up sunrise and sunset data for him, reminding him that shower time is 7:00 P.M., and encouraging him to drink his apple juice in the beloved red “Solo” cup.  I just hope that he can always find little things that make him happy—what a blessing that truly is!

“Are any of you suffering hardships? You should pray. Are any of you happy? You should sing praises.” James 5:13

Sunday, August 12, 2012

Interviewing Alex

Last week, we met with Alex’s behavioral therapist for the first time. As I mentioned in my last blog entry, the state disability funding will pay for a behavioral therapist to work with Alex on not only improving his impulse control but also improving his self-help and life skills. In our first meeting, Alex’s therapist, Melissa, interacted well with him as she asked him a variety of questions while trying to learn more about him. In fact, she must have made a favorable impression upon him because the next morning, Alex asked me, “When is Melissa coming back?” That he looked forward to seeing her again and remembered her name struck me as a positive sign.

To get to know Alex better, Melissa launched into questions that we have answered many times with various people from different agencies during this summer odyssey to obtain disability services for Alex. In my blog entry, “Coming Home,” I described how this interviewing process reminded me of setting up a dating profile for Alex. Now that we have answered questions about Alex’s interests and personality repeatedly, I almost wish I had set up an online dating account so those who want to know more about him could simply pull up his profile.

Because Alex’s verbal skills are weak, Ed and I often find ourselves answering questions for him. He is generally good at answering “Yes/No” types of questions, but if he has to elaborate, he relies upon us to give the essay types of answers. Although we will usually give him a chance to try and respond to questions, we will jump in to help him when he doesn’t seem to have the words to express what he wants to say. After living with him for more than twenty years, we know what kinds of things he likes to do, and we are happy to answer for him. However, I often wonder what other people think when we speak for Alex, especially when they take copious notes during these interview sessions.

To begin getting to know Alex, Melissa asked the typical interview question about what Alex likes to do. Sitting next to Alex, I tapped him on the knee to get his attention and prompt him to respond. When he didn’t say anything, Ed said Alex’s name so that he would know it was his turn to talk and then rephrased the question. Since Alex didn’t respond to either of those cues, I asked him what kinds of television shows he liked to watch. Finally, we had his interest, and he said that he likes game shows. Melissa followed up this question by asking him what his favorites games shows are, and he responded with "The Price Is Right and Wheel of Fortune." Of course, his articulation issues and tendency to talk softly makes him somewhat difficult to understand, so I did what I often do when Alex speaks—I repeated his answer for her to hear.

Throughout the questioning process, we followed our usual procedure of trying to get Alex to focus, helping him understand the questions by rephrasing them, prompting him to answer, followed by repeating his answers or simply answering for him. As Melissa continued asking questions to find out more about Alex, I began wondering what kinds of things she was jotting in her notebook. Paranoia isn’t one of my finer traits, and I often wonder if other people judge Ed and me for the way we have parented Alex from our decision to home school him to our decision to hospitalize him and have him medicated for his extreme anxiety. While we have always striven to do what we felt was best for Alex and believed that our prayerfully considered decisions were guided by God, we know that not everyone would have made the same choices we have.  In my curiosity about Melissa’s impressions, I imagined the things she might have written in her notes.

Parents talk so much the poor kid never gets a word in edgewise.

Parents claim to understand what he’s muttering; wonder if they’re just making up answers for him.

He reminds me of the “low talker” on an old episode of Seinfeld [Watch an excerpt from this episode by clicking here.]—worried that somebody may be agreeing to wear a puffy pirate shirt if we’re not careful.

This would be a pretty good ventriloquist act if the parents’ lips didn’t move so much.

While I doubt any of these ideas were running through Melissa’s head, we always wonder what kind of first impression Alex makes upon people. We hope that given a little time to feel comfortable with her, Alex will charm her with his sweet nature and clever sense of humor. In the meantime, Ed and I will happily continue one of our most important roles as Alex’s parents—his interpreters who help him make sense of language and help others understand that he does have something important to say.

“I love the Lord because He hears my voice and my prayer for mercy.” Psalm 116:1

Sunday, August 5, 2012

Detour Ahead

“As believers, we will never be permanently disappointed. Somewhere down the road, God will cause it all to work out for our good.” --Joel Osteen

In previous blog entries, I have described our efforts this summer to place Alex in a day program for disabled adults and our enthusiasm about finding a local program we found to be ideal for meeting his needs. In addition, we were delighted that Alex recently qualified for state disability funding that would pay for this program as well as respite care and behavioral therapy. Under the impression that everything was rolling along nicely toward our goals, we were hopeful that Alex would be enrolled in the day program before Ed and I go back to our jobs as teachers in a few weeks. As the old saying goes, “Man plans; God laughs.”

Alex’s state funding went into effect this week on August 1st, and we assumed that his services would be starting shortly after his caseworker had submitted the budget and had it approved. However, a little over a week ago, we received an apologetic e-mail from the agency that runs the day program telling us that they had concerns about Alex’s behavior, due to his history of aggression prior to his hospitalization.  Originally, they had thought he could be in a group of four with a supervisor, but they decided he might need one-on-one supervision instead. Moreover, they currently don’t have the staffing to give him one-on-one supervision.

Their recommendation was that we have a behavioral therapist complete a comprehensive evaluation to see how much supervision Alex might need in the day program as well as to assess his behavior. We had already chosen an agency whose therapists have extensive experience with autism to work with him for the behavioral therapy component of his state services. In fact, we had met with their primary therapist last month for a behavioral assessment, and we were impressed with her knowledge of autism and her interaction with Alex.

The same day we received the disappointing news that Alex’s admission to the day program would be delayed, we also received a very nice e-mail from the behavioral therapist we had met last month, assuring us that they would be able to provide the comprehensive behavioral evaluation and report the day program had requested. This therapy agency had assigned a behavioral therapist for Alex, and they expressed enthusiasm about working with him. The e-mail explained that this process would take about sixty days, so we figured that this would likely delay Alex’s starting the day program for at least two months.

While the process isn’t going exactly the way we’d planned, Ed and I know that things happen for a reason, and we believe working with the behavioral therapist prior to beginning the day program will be a good experience for Alex. Besides working on negative behaviors, such as his impulse control, where he grabs for things instead of asking first, for example, they will also work on positive behaviors, including life skills and self-help skills. We know he will truly benefit from these lessons that will help him improve his social skills and make him more independent.

In the meantime, we continue to work with Alex so that he complies with requests, follows directions, and answers questions when he is asked. Essentially, the delay of the day program gives us more time to make sure he is ready to learn and cooperate once the time comes for him to participate. We look through our eyes of faith and see that God’s plan is better than ours and know that He is working behind the scenes to make sure the path for Alex is smooth, as all parents want for their children. While initially this delay seemed like a setback, the more we thought about it, the more we realized that it’s actually a setup so that Alex will be ready, and only God knows when that ideal time will arrive. Once again, we realize that one of the most important lessons of parenting a child with autism is learning to wait patiently, yet expectantly, knowing that things will eventually work out in the end.

“In the morning, Lord, you hear my voice; in the morning I lay my requests before you and wait expectantly.” Psalm 5:3