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

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.

COMMUNICATION
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.

COOPERATION
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.

FLEXIBILITY
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.

INDEPENDENCE
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.

PATIENCE
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

Sunday, February 22, 2015

Onward and Upward

 
This past week, we met with Alex’s support team for his quarterly meeting. Since he receives state disability services, these meetings are required every three months to monitor his progress, plan for the upcoming months, and discuss any concerns that have arisen since the last meeting. For these meetings, his case manager, behavioral therapist, music therapist, and a representative from the agency that provides respite care and day programs meet with us. Essentially, these meetings resemble annual case conferences for special needs students who have IEP’s.

Because Alex is an emancipated adult; that is, we have decided not to declare him legally incompetent at this time and are therefore not his legal guardians, his presence is required at the meetings. As his parents, Ed and I can advocate for him, but Alex ultimately can make decisions about his support program. Fortunately, he is quite content with his team of professionals and the work they are doing with him. Consequently, my main roles in these regular meetings is to play hostess since they meet in our home and to help Alex navigate the process, explaining what others are saying as needed and translating for him when his speech is difficult to understand. With several people in the room at the same time, he sometimes becomes confused as to whether a question is addressed to him or not. Sitting beside him, I often gently tap his leg to let him know that he is being questioned so that he realizes that he needs to provide an answer. At times, questions are directed to me, and I try to respond as clearly as possible to provide an accurate report of Alex’s current state.

To be honest, I felt a little disappointed right after the meeting concluded. Because Alex has made great progress in the past three months, adjusting amazingly well to his new computer class and making significant improvements in his behavior by showing more patience and flexibility as well as managing his anxiety through coping techniques, I anticipated that we would simply celebrate his achievements. While his therapists noted his improvements, they also focused on areas that still need improvement, namely his tendency to talk too softly, his need to be reminded to use manners by saying please and thank you, and his need to develop greater independence in daily living skills. While I value these skills, I’m delighted that he has overcome two huge hurdles that negatively impacted our lives and led to our getting services for him in the first place.

When Alex’s behavior plan was first written two and a half years ago, he desperately needed to improve three areas: physical aggression, property destruction/mishandling, and inappropriate social behaviors. Thanks to therapy, medication, and maturation, Alex has learned to handle his anxiety appropriately so that he doesn’t resort to aggression or throwing things for attention. This improvement has made our lives so much easier, not worrying that he might have an all-out meltdown. Also, his behavior improvements have permitted him to go more places in public because we don’t worry about him behaving badly. Essentially, our lives have changed so much for the better with the disappearance of the physical aggression and property destruction that we could be satisfied with just mastering those two areas.

However, we also know that Alex also needs to improve his social skills, which his behavior plan defines as not invading other people’s personal space, including not touching them or their belongings, covering his mouth when he coughs or sneezes, and not talking too quietly to be heard or not responding at all. Certainly, as he interacts with more people and goes out into the community more, these skills will serve him well. Yet, I thought after he learned to control his angry outbursts, we might enjoy a plateau period where we just rested a bit, grateful that our lives were finally peaceful. Instead, the meeting this week reminded me that we need to keep moving forward to help Alex fulfill his potential. Yes, he is much better than he was, but his therapists believe that he can continue to get even better and will push him to improve his social skills until he masters those, too. They reminded me that “good enough” is selling Alex short because he can be better than that.

As I reflected more on the meeting, I was able to get past focusing on the weaknesses they discussed and the work we still need to do as his support team and to hear why they believe he can overcome those issues that still linger. They describe him as “smart” and “capable”; they see beyond the typical autism behaviors of social impairment to what he can achieve. Also, I realize that when he masters all these goals, he will need new ones, and at some point, he may not need all the support he is currently receiving. As much as I’d like to rest on the peaceful plateau I imagined, I know that we need to keep moving onward and upward so that Alex can achieve what he is capable of doing.

Looking back, I can recall various tasks that seemed unending and perhaps even impossible. We wondered if Alex would ever become toilet trained, and eventually he did learn to go to the bathroom independently, which made our lives easier. We wondered if we would ever be able to have a conversation with him because his language skills were so weak, and now we can talk with him, despite some lingering speech issues, and find ourselves amused and amazed by what he tells us. We wondered if we would ever be able to take him out in public and trust that he would behave himself, and now we take him someplace nearly every day, not worried that he will misbehave and enjoy watching how happy it makes him to be out and about in the world. Consequently, I know now that Alex has great potential, and I need to be reminded that he can overcome these difficulties with time, patience, and support.

While I first thought his support team was not fully appreciating what Alex has accomplished recently, I can now recognize that they see him more objectively than I can. As his mother, I focus on what he has done, but his therapists are looking forward to what he can do. For years, Ed and I were unable to find professionals who could help Alex, and now we are blessed with a group who not only understand him as he is but also can envision what he can be with time and intervention. Working with them, we know that we will move onward and upward, not resting on what we’ve already accomplished, but knowing that Alex can, indeed, keep improving, master goals, and reach his full potential.

“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.” Philippians 3:12

Sunday, February 15, 2015

Computer Class

 
As I have mentioned in previous blog entries, we have tried to enroll Alex in a good day program for adults with developmental disabilities for over two years because we wanted him to have the opportunity to socialize with peers. However, his past behaviors raised red flags for the day program we felt would be best for him, despite the improvements he has made over time with medication and behavioral therapy, and they placed him on a long waiting list. In the meantime, we filled his schedule with music and recreational therapy and two hours a week of activities with a caregiver who is about his age. Also, Ed and I have kept Alex busy by taking him to various stores, restaurants, concerts, and sporting events so that he could engage in typical activities. Thankfully, this waiting period gave Alex time to learn coping skills for his anxiety as well as appropriate social skills to use in public.

In December, the day program we had chosen finally had an opening, but we declined the offer. Even though we had thought this program was perfect for Alex, we no longer felt that it was right for him. For one thing, he would have to travel about a half hour each way to get there, and we didn’t think traveling for an hour every day was a good use of time for him. Also, the program had grown during the time we were waiting, and we were concerned that the number of clients and the increased size of the facility would overwhelm Alex. In addition, Alex’s behavioral therapist and case manager, who frequently visit this program to see other clients of theirs, agreed with our decision not to send him there because the program no longer seemed ideal for him.

Instead, Alex’s case manager had told us of a new, much smaller day program that opened last spring. Along with the smaller size, the program appealed to us because their location is less than five minutes away from our home. After touring the facility, we knew that Alex could thrive there; however, their director also had concerns about Alex’s past behaviors. Thanks to the intervention of his behavioral therapist and case manager, they were able to convince the program director to allow Alex to have a trial period to see how he would do in that setting and to prove that he has made significant progress in three years. Knowing Alex’s strengths, his case manager suggested that he could take a computer class there, and they agreed to enroll him for an hour once a week to start.

In January, Alex and I met with the young woman who would be working with Alex and teaching him computer skills. Alex’s behavioral therapist, who met with her to give a briefing on Alex’s strengths and weaknesses, and I were both impressed with her warmth and enthusiasm and felt she would work well with him. So as not to disturb Alex’s afternoon therapy schedule, we decided that he would go to the day program on Thursday mornings from 10:30-11:30, which meant that Ed would get him ready in the morning and bring him to the computer class each week since I’m at work at that time. Even though Alex would have to tape his beloved The Price Is Right episode and watch it later, he was eager to go to “computer school.”  After waiting for so long to get him into a day program, Ed and I hoped that Alex would behave himself so that he could continue and wouldn’t be asked to leave. Fortunately, he has done even better than we could have hoped.

The first week, his teacher assessed his computer skills, which seemed to be stronger than she thought, as he was able to do all the tasks she asked of him. She even had him create a flyer for their agency advertising an upcoming event, and he was able to type all the text correctly and with her guidance add clip art to illustrate the text. After he finished all the work, she allowed him to take a break, telling him that he could play computer games of his choice. However, he apparently did not want to take a break and preferred to work the entire time, so he simply sat there silently and waited for her to make other suggestions. I suspect that she didn’t realize how quickly he would be able to complete the work, and the next week, she had more planned for him to do.

The second week, an activity that could have thrown Alex for a loop thankfully did not. When he arrived, they were getting ready to have a fire drill. After his teacher explained what was going to happen and what Alex would need to do, he complied with her directions and didn’t seem fazed by the activity at all. After starting his session by standing out in the cold, Alex cooperated beautifully with his lesson on spreadsheets, and Ed said that his behavior was perfect. In addition, she introduced him to the other clients in the day program, three young men, one of whom commented about Alex, “He’s really tall.” At the end of the session, his teacher gave him homework in the form of charts he was to fill out regarding prices for his favorite stocks, and he happily and faithfully completed this assignment every day until his next class when he would enter this data on a spreadsheet he created.

The third week, another complication arose at the beginning of class when his teacher was late because she was working with another client. Nonetheless, Alex handled this disruption without incident, going ahead and starting to work on the computer, as she told him to do while he was waiting. Again, Ed noted that Alex’s behavior could not have been better, even when his teacher was flustered because she could not get the computer printer to work and had to make some adjustments to what she had planned. Alex easily accepted the changes to what she had planned. Moreover, he really liked the homework she gave him for the next week—tracking the daily weather data for the following week.

Last week, once again Alex calmly adapted to complications as he and Ed had to drive in a blizzard to get to computer class. As he had in previous sessions, Alex cooperated and completed his tasks exceptionally well. Along with his spreadsheet activities, he showed his knowledge of Spanish, math, and parts of speech as he completed some computer drills on these subject areas, and his teacher seemed impressed with his skills. Because it was the day before Valentine’s Day, the other two instructors gave Alex valentines, and one had prepared a treat bag filled with gluten-free snacks that Alex could have on his restricted diet, which was especially thoughtful. Also, the other instructor commented that she always looks forward to Thursdays because she gets to see Alex. Echoing her kind sentiments, Alex’s instructor told me in an email last week that he is doing very well and that he is “such a pleasure to work with.” As parents we couldn’t be prouder of him, and we know that he is exactly where he is meant to be in this smaller program where he has been able to shine and to endear himself to the staff who see the good in him.

Although we hope that eventually Alex will be included in more activities at the day program, we are delighted that he has adapted nicely in such a short time and pray that he continues to do well. One night as he and I were talking about his computer class, he enthusiastically told me how much he liked the class. Then he earnestly asked me if he could still be a meteorologist or an astronomer, the dream jobs he has talked about since he was a little boy. I think he put those dreams on hold for a while, and the success he is having now with his computer class has reminded him of what he would like to do someday. While I don’t know what the future holds for Alex, I pray that he will have opportunities like this computer class to develop his skills and learn from people who bring out the best in him, and perhaps one day he can be the scientist he aspires to be. As long as he finds joy and fulfillment in whatever he does, we will be grateful, knowing how far he has come.

“See, the former things have taken place, and new things I declare; before they spring into being I announce them to you. Sing to the Lord a new song, His praise from the ends of the earth…” Isaiah 42:9-10

Sunday, February 8, 2015

I Don't Know What Causes Autism

 
This week, Huffington Post featured a heartfelt blog entry written by autism mom Carrie Cariello entitled “I Know What Causes Autism.” [To read this essay, please click here.] With all the uproar regarding the recent outbreaks of measles at Disneyland and a Chicago area day care center, this essay has garnered quite a bit of attention because she addresses the controversy of vaccines and autism. To summarize, after she lists several potential causes of autism proposed over the years, she dismisses all of them “for now,” proclaiming that her son’s autism is genetic: “So, for now, I’m going to believe that Jack’s autism is because of DNA and RNA and heredity.” Furthermore, she asserts, “He’s exactly the way he’s supposed to be.” As she explains, “If I start running around declaring autism an epidemic and screeching about how we need to find out where it’s coming from and who started it and how to cure it, well, that sort of contradicts the whole message of acceptance and tolerance and open-mindedness.” Although I appreciate her candor in explaining her opinion regarding the cause of autism, I must respectfully disagree.

Maybe it’s because I’ve been an autism mom more than twice as long as she has.

Maybe it’s because we have watched Alex struggle with puberty and hormonal changes, something she probably hasn’t yet experienced with her son.

Maybe it’s because I’ve had more time to research and compare notes with other parents whose lives parallel ours.

Maybe it’s because we’ve run tests that have diagnosed mercury and aluminum poisoning and know that both of those toxic metals exist in vaccinations.

Maybe it’s because I know that you can love the child unconditionally but hate the disability passionately yet still be accepting and tolerant.

Maybe its because I don’t believe that Alex is exactly the way he’s supposed to be. I believe that autism has robbed him of things typical people his age enjoy, and I intend to do everything in my power to make sure he will not always be denied those opportunities.

On Friday, the discussion of the measles outbreaks arose among a group of my colleagues. One sympathetic friend noted how awful it was for those tiny babies to have the measles and how miserable they must be. I thought of how awful it is for children with autism who, unlike the vast majority of children with measles, don’t get better after a few days. Our oldest and wisest colleague noted that he had been immunized against both measles and mumps, but still got both diseases as an adult and questioned the effectiveness of vaccines. The youngest colleague, who is cocksure about everything, claimed that he had read “all twelve of the case studies,” and was certain that vaccines don’t cause autism. Although I was torn between wanting to slug him or to enlighten him on the autism research I’ve been doing for twenty years, I decided that either would be a waste of time and energy because he had already made up his mind, and I left the room.

Immediately following me was my colleague/close friend/confidante who knows my story well and who knew that I had left without a word after deciding that “Discretion is the better part of valor.” As the mother of two small children, she has struggled with the issues of vaccine safety herself, wondering and worrying if she is doing the right thing, and I have supported her decisions, just as she has supported mine. For the record, Alex received all of his childhood immunizations on time according to the CDC schedule because at that time little was known about possible links between autism and vaccines and because I believed that was the right thing to do at the time. Although I don’t know for certain that vaccines caused autism in Alex, I certainly believe they were a contributing factor for him. Consequently, I understand the dilemma parents face in deciding whether or not to vaccinate their children.

As my beloved friend and I discussed the issues of immunization rationally and respectfully, we came to the same conclusion that as mothers we want what’s best for our children and pray that we make the right decisions. As she wisely pointed out, we will love our children no matter what problems we face. However, we know that life is hard, and we don’t want our children’s lives to be harder than they need to be. Therein lies the crux of my drive to find out what causes autism and why I can’t be satisfied until I know the answer: I don’t want life to be harder than necessary for Alex.

If we can find the cause of autism, then maybe we can find effective treatments and potential cures. I want people to be as outraged about the autism epidemic as they clearly are about the measles epidemic so that they will work harder and faster to help those affected by autism. Moreover, I don’t believe that this is how God intended Alex to be; I believe that Alex is meant to be healthy and to live an abundant life. Accepting what is instead of seeking what can be feels wrong to me, and I have hope that Alex will overcome autism one day. Until then, I’ll keep searching for the cause of autism so that Alex and others like him can be healed and so that other families don’t have to worry that their children will face the struggles those children with autism have endured. Unlike fellow autism mom Carrie Cariello, I don’t know what causes autism, and that frustrating uncertainty mightily motivates me to keep looking for an answer.

“Lead me by Your truth and teach me, for You are the God who saves me. All day long I put my hope in You.” Psalm 25:5

Sunday, February 1, 2015

Autism Connections

 
Somehow we just know. Maybe it’s the lack of eye contact, the toe walking, or the hand flapping, or even more likely the way the parent helps the child navigate a public place, but those of us whose families have been touched by autism recognize each other almost immediately. Knowing that staring is hurtful, we watch surreptitiously to confirm our suspicions that they, like us, belong to the autism club none of us ever wanted to join. If our understanding gaze is met, we smile and try to convey that we empathize. Often, we do not speak—like our children with autism, we’re not sure what to say in the situation. Somehow just knowing that we’re not alone comforts us and reassures us that others are dealing with lives similar to our own.

Other times, the signs are more obvious, and we can connect beyond the knowing look and sympathetic smile. For example, last summer when Alex went for his routine blood tests, which he thankfully finds fascinating and handles amazingly well, the lab technician interacted with him with such ease and compassion that I suspected she had some first-hand knowledge of autism. As I noticed an autism awareness ribbon on her identification lanyard, she told me to ask for her specifically whenever Alex needed blood draws and explained that she, too, was the mother of a child with autism. Quickly, we compared notes, discovered several similarities between our children, and felt a sense of relief to talk with another parent who understood raising a child with autism.

Similarly, when we took Alex a few months ago to a new doctor for a check up, I was pleased to observe that the nurse knew how to engage him and make him feel comfortable. While she spoke to him sweetly, she never treated him like a child, nor did she act patronizing to him because of his disability. Once again, I noticed that she was wearing an autism awareness pin on her identification lanyard, and I asked her about her interest in autism. She explained that another nurse in the office has a son with autism and gave all of the nurses autism awareness pins to wear, which I thought was a great idea. Not only could this autism mom and her co-workers promote autism awareness, but also by wearing the pins, they immediately identified themselves as supportive to any families dealing with autism. All of those nurses with their autism awareness pins demonstrated that their office was a safe place where parents knew their children with autism would be welcomed and understood.

Other times, we dance around the details before we figure out our common link of autism. A few months ago, I was talking with my doctor’s nurse who was checking my blood pressure, and I commented that my blood pressure was amazingly good, despite the stress of teaching middle school kids and raising a “high-maintenance” son. Like typical mothers, we chatted briefly about our sons before discovering that both of our boys are on the autism spectrum. As in other similar situations, I felt relief to find someone who truly understands my situation as an autism mom and wanted to share as much information as possible within a short period of time. Now that she and I know that bond we share, we will smile knowingly at each other, cognizant of how our lives parallel.

Last night, we took Alex to Target as a reward for a good week in which he was cooperative with all of his therapists and us. Happily looking around at various items in the store, he was delighted to find a special 80th anniversary edition of Monopoly, his favorite board game. He was even more delighted when I reminded him that he had Target gift cards his aunts and uncles had given him for Christmas that he could use if he wanted to buy the game. Immediately, he decided that he wanted to spend his gift card on that special edition game and cradled the box in his arms as he carried it to the checkout counter. As Alex stood patiently waiting to check out, smiling because he found the special game, I noticed the cashier watching him. Unlike the mean girls in Burger King who stared and snickered at him last week, this young woman had a kind way about her. Of course, Alex was oblivious to her because he was just happy to be getting the game he wanted. She asked him, “Is this game for you?” and he just smiled. She then told him that he hoped he liked it, and I prompted him to thank her, which he did quietly.

After she placed the game in a bag and handed it to Alex, he and Ed moved out of the line and waited by the door for me to pay. Hesitantly the cashier said to me, “I miss my old job and the special needs kids I worked with.” I knew she recognized Alex’s autism and wanted to let me know that she understood him. Addressing the elephant in the room, I told her that he has autism, which confirmed what she probably suspected, and she told me that her sister has autism. Once again, members of the autism family club had found each other, and we nodded knowingly. She asked me about his functioning level, and I explained that he is verbal, even though he doesn’t talk a lot, and he’s toilet-trained, so we are fortunate. Then she confided something that made me know why she wanted to engage me in conversation.

“I’m worried that my ten-month-old baby girl has autism.” She explained that because her sister has autism and because she has seen signs in her daughter, such as hand flapping, she has concerns. Listening sympathetically, I nodded and hoped that her suspicions are wrong. She told me that she would keep watching her baby and if the signs continued, she would have her evaluated for autism. Trying to reassure her as the line of customers behind me reminded me I had little time, I told her that I was sure she was doing the right things. I also told her that I hoped her suspicions were wrong and that her baby would be all right, but I also reminded her that because of having a sister with autism and working with special needs kids, she would know what to do, and her daughter would be fine. While I hoped I had said the right things to reassure her, her eyes filled with tears as she smiled and thanked me.

Once again I realized that Alex has an important role in life as an ambassador for autism. People recognize his weakness in the disability, but they also see the strength in his joy and the progress he has made. Because of him, we have connected with wonderfully compassionate people who understand what we have faced because they have dealt with similar issues. Although I wish that none of us had to endure the difficulties autism presents, I’m thankful for the support we families can give each other as we wait for our children to be healed.

“And this hope will not lead to disappointment. For we know how dearly God loves us, because He has given us the Holy Spirit to fill our hearts with His love.” Romans 5:5

Sunday, January 25, 2015

Making Good Choices

 
When Alex first began behavioral therapy, the primary goal was to teach him to deal with his anxiety and aggression. However, as he has learned to manage these issues, his behavioral therapist has shifted the focus to helping him improve his social skills, a common difficulty for people with autism. To teach him appropriate ways to interact with others, we practice at home by discussing how he should behave and by using social stories so that he knows what he should and should not do. Moreover, we give him opportunities to practice what he’s learned by taking him to public places, such as restaurants, stores, and concerts. During these outings, we have been pleased that Alex demonstrates that he has learned well the lessons his social stories have taught. On the other hand, I have been astounded by the rudeness of some of the people we encounter out in public. While my temptation has been to say, “My son has autism, what’s your excuse?” I realize that they have not had the benefit of therapy that has taught him to interact appropriately. Consequently, I’d like to share some of the social skills lessons for those who could benefit from what Alex’s behavioral therapist calls “Making Good Choices.”
USE YOUR CALM DOWN SKILLS

Because Alex can become anxious and overwhelmed in certain situations, he needed to learn techniques to help calm him so that he doesn’t have meltdowns. He can listen to music, do deep breathing exercises, and/or count to ten in various languages (English, Spanish, French, German, and Turkish) to help him settle down. Although he may need to be reminded about these techniques when he’s upset, Alex can use them effectively to manage his anxiety. Last week, we encountered someone who could also benefit from these calm down skills when we were going with Alex’s behavioral therapist, Jennifer, for our weekly outing to practice social skills. As we approached the fast food restaurant where we were headed, I saw a fire truck and ambulance with flashing lights blocking our path and knew we would have to take an alternate route. Apparently, my action angered another driver who didn’t see why I had to turn, and I could tell from his facial expressions and from my limited lip reading skills that he wasn’t happy with me. To make sure I knew he was upset, he gave me the middle finger gesture. As Jennifer observed, “He wasn’t very friendly, was he?” While I put calm down skills to use so that I didn’t return any hostility, I realized that rude man should have been using his fingers to count instead of to insult me. Certainly, he needed some calm down skills so that he could make better choices.
USE YOUR MANNERS

We have worked with Alex to use polite phrases, such as, “Please,” “Thank you,” “You’re welcome,” and “Excuse me,” and he is still mastering saying them at the appropriate times and saying them loudly enough to be heard. However, I’ve noticed that many people who cannot use autism as an excuse also seem to have not mastered these skills. For example, we have practiced with Alex the scenario of saying “Thank you” when someone holds a door open for him, but I have found that some people seem to forget their manners when I’ve held doors open for them and say nothing to me. In addition, we’ve taught Alex to get out of people’s way when we’re in grocery store aisles or waiting in line, but I’m amazed by the people who stroll along, seemingly oblivious or even not caring that they are in someone else’s way. Also, Alex has learned by playing board games to wait his turn and to be ready when it is his turn so that he doesn’t make others wait. Sadly, some adults apparently have not learned this courtesy lesson, as I discovered in Panera Bread the other night when a couple held up the entire line, taking their sweet time to decide what they wanted and then taking unnecessary time to pay for their food, never once apologizing for their rude actions. Without a doubt, these types of inconsiderate people need to use their manners.

DON’T STARE

While Alex still struggles with making eye contact, a common issue found in people with autism, at times he finds something or someone interesting enough that causes him to cast a lingering look. Often, he may find someone’s voice engaging, or he may find children’s behavior amusing, and he watches them in delight. However, we remind him that staring is not polite. Apparently, not all parents teach their children this lesson. The other day, Alex, Jennifer, and I were at Burger King for our Friday social skills outing, and Alex had decided that he wanted to order his food himself. As he struggled a bit to order, the cashier was very sweet and patient with him, but I noticed two teenage girls staring at him and smirking. While my motherly protective instinctive reactions ranged from wanting to smack them to saying sarcastically, “Take a picture, it lasts longer!” to wanting to explain that he has autism, I realized that nothing I could say or do would teach these mean girls a lesson. Fortunately, Alex was oblivious to their rude behavior because he was so busy trying to use his manners. Following his lead, I used my calm down skills and my manners, and I didn’t stare back at them. As much as their behavior was hurtful, I could also feel sorry for them because unlike Alex, they either had not had loving people teach them how to act appropriately, or they were not working as hard as he is at using social skills. Not only am I thankful that Alex is trying to make good choices, but also that he never seems to notice those around him who fail to make those good choices. Despite the obstacles autism has put before him, he keeps striving to become a better person, and that good choice makes us proud.

“So let’s not get tired of doing what is good. At just the right time we will reap a harvest of blessing if we don’t give up.” Galatians 6:9

Sunday, January 18, 2015

A New Thing

 
As someone who likes to plan things down to the smallest details, I become frustrated when things don’t go as planned or when unexpected events arise, making me feel unprepared and anxious. In raising a child with autism, I have learned that I can make all the plans I want, but at the last minute, things may change suddenly to derail those plans. Consequently, life with Alex has taught me patience and flexibility. Most importantly, I have learned that God’s plans are always better than mine, and I need to allow Him to guide me so that I make the best decisions for Alex.

While waiting two and a half years for a day program that we had thought would be ideal for Alex, we kept hoping that Alex’s name would soon come to the top of the waiting list. As time passed, we sensed that his enrollment would not be imminent, which was disappointing because we thought that was the direction we were supposed to go. Instead, we worked with our case manager to develop an alternative program to help Alex make progress, adding music and recreational therapy and finding an agency that could provide respite care that better suited our needs than the previous agency had. In addition, our case manager found a new smaller day program located less than five minutes from our home for us to consider. While we were waiting for what we thought was the ideal day program, we were going to keep Alex busy and moving forward in developing his skills.

Two months ago the day program finally contacted us to let us know that Alex’s name had come to the top of the waiting list. However, we no longer felt that this program was the best placement for him now. The program we put in place for him as we were waiting, essentially our Plan B, had turned out even better than we had expected. God had led us to the right people who could help Alex. Therefore, we were not going to make drastic changes by setting aside what has been working well just so that Alex could attend the day program. After discussing all the pros and cons with our case manager and Alex’s behavioral therapist who agreed with us, Ed and I believed that turning down the offer of the day program was the right decision.

Although we were a little concerned about closing a door, we discovered that God had opened another door for us. About the same time, the day program near our home offered to teach Alex computer skills on a one-on-one basis. To start, he would go there for an hour one day a week, and he could increase the time and number of days as he acclimated to the new setting. This program sounded ideal because of its flexibility, convenience, and accommodation of Alex’s interests and abilities. However, once again, we were told we would have to wait a while to get this program started. Having waited over two years for the other program and nearly a year to get respite care started from this same agency, I decided that I could wait patiently. I knew that when the time was right, things would eventually fall into place.

Two weeks ago, the new day program contacted me, anxious to get started working with Alex on computers. The person who was arranging the details had just been transferred to the office here in town, and she was eager to get things rolling. Quickly, she arranged training with Alex’s behavioral therapist to learn how to work best with him, and she arranged a meeting with Alex and me to discuss the program she had planned for him and to answer any questions we had. While I was pleased that we finally seemed to be moving forward on this program, I was a little taken aback by how suddenly things were being put into motion after being on hold for a while.

Also, to enroll Alex, the agency needed paperwork showing that he had had a recent physical examination and a TB test. At first, this detail sent me into brief tailspin mode, as I thought we’d have to arrange for Alex to have a TB test and knew that I had no paperwork from his doctor regarding his physical this summer. After a little online research, I found that the Minute Clinic where we’ve taken Alex previously could do a TB test, which set my mind at ease. However, I then discovered that a chest x-ray could substitute for a TB test. Fortunately, before Alex had his wisdom teeth removed in November, he had to have a physical exam, an EKG, blood tests, and chest x-rays to make sure he was healthy enough for anesthesia. Because his regular doctor has reduced his hours, we took him to a new doctor for his physical exam. Fortunately, her practice offers online medical records for patients. After logging on to Alex’s account, I discovered everything I needed for the day program, and I printed out copies of the test results and doctor’s notes. Even though I had been reluctant to take Alex to a new doctor for his wisdom teeth exam, I realized that God had led us to her so that we would be able to access all the information we needed to enroll Alex in the computer class. God knew what we would need in the future and led us in the right direction.

After meeting with the young woman who will be teaching Alex computer skills and feeling positive about how nicely she interacted with him, I’m hopeful that this new addition to his schedule will work well. Of course, we always worry about how he’ll adapt to new situations and new settings, and we hope that he will put to good use the social skills we’ve worked hard to instill in him. As for Alex, he seems really excited that he’s going to be starting computer school this week. While he begins something new, we pray that everything goes smoothly and that this is one more piece of the puzzle that will allow him to reach his potential. In the meantime, we trust God, who made this path smoother by guiding and changing our plans, will lead Alex where he’s supposed to go and will give him the hope and future He promised.

“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