Sunday, March 29, 2015

Spring Break 2015

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

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

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

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

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

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

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

Sunday, March 15, 2015

Dining Out on a Gluten-Free Casein-Free Diet

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sunday, March 8, 2015

Spring Forward

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

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

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

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

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

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

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

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

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

Sunday, March 1, 2015

A Matter of Perception

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

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

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

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

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

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

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