Father and Son

 

An old Jewish proverb states, “God couldn’t be everywhere, so He created mothers.” As an addendum to that saying, I would add that because mothers can’t be everywhere, God created fathers. Like all other moms, and especially those who have children with special needs, my role involves juggling various responsibilities to make sure Alex gets what he needs. However, without Ed’s support, encouragement, and steady presence, I would never be able to manage all those tasks required of me. Just this past week in a variety of situations, I was reminded how well we complement each other as parents, both working toward helping make Alex’s life the best it can be.

On Monday, we took Alex to his psychiatric nurse practitioner for his regular six-month appointment to monitor his health and progress. When we go for medical appointments, my primary responsibility is to act as Alex’s health care advocate, speaking the medical lingo with the professionals, and Ed’s primary role is to keep Alex calm and entertained as we wait. As Ed chatted with Alex about the Beatles, I rattled off the prescription medications he is taking, the dosages, and the times of day he takes them. When we met with his nurse practitioner, I gave a brief summary of his progress and behavior as well as answered her questions. While I try to be objective, Ed takes the opportunity to highlight Alex’s accomplishments, making no secret how proud he is of his son. Of course, both of us were pleased that not only were Alex’s blood tests and vitals excellent, but also that he handled himself well, answering her questions pleasantly and politely.

On Wednesday, I went out to dinner with some friends for a Girls’ Night Out, leaving Alex and Ed to enjoy one of their “Boys’ Suppers.” This means that Ed cooks seafood, which they both love and I despise, and they look forward to these opportunities to eat their favorite food together. When I came home, I found Alex in his favorite spot, stretched out on the loveseat with his long legs hanging over the end, and Ed stretched out on the couch, both of them contentedly watching baseball on television. Knowing that Ed takes good care of Alex and that Alex enjoys time alone with his dad allows me to enjoy some time with my friends and gives me a break from the autism mom routine.

This week, I wondered aloud how much Alex’s therapies were benefitting him, not being critical of his terrific therapists, but just questioning how much of his progress simply comes with time and maturation. Ed immediately listed all the positive aspects of Alex’s therapy, reminding me how valuable those sessions are to Alex. Perhaps one of the greatest strengths of our marriage and partnership as parents is that when one of us is flagging in energy and enthusiasm, the other points out all the good to lift the spirits and encourage moving forward toward our goal of making Alex better.

Yesterday, we took Alex for a Saturday Social monthly event at an agency that provides services for adults with disabilities. A couple of months ago, we had taken him for the first time to this program; that time the activity was crafts, which are not among Alex’s favorite things to do. However, he apparently had a good time because he pestered me to call them to find out what the activity was for this month. When he found out the planned activity was Bingo, he was delighted because the combination of letters and numbers in the game are right up his alley. Since Alex did so well the last time we took him, I had told Ed that he didn’t have to go and that I could take him myself. Nonetheless, Ed decided to go along with us, even though he was the only male there other than Alex. Even though I know he hates situations where he has to make small talk, he pleasantly chatted with people and cheered on Alex, who won four prizes. Besides being there for Alex, I know he was there to support me, to make me feel more comfortable in a relatively new situation.

As we celebrate Father’s Day today, I am thankful that God blessed my son with such a loving and caring father. Even though life with autism has meant that our life is much different than those families who have typical children, Ed makes the best of our situation, focusing on Alex’s strengths and not his weaknesses. In times of crisis, he provided the strength I needed to get through the situation, and in the day-to-day routine, he offers his opinions but trusts my judgment. While Alex can’t fully express his feelings, I know that he adores his father and thinks he’s the smartest and funniest guy he knows, and he knows Ed feels the same way about him. Through all the obstacles, their love has grown stronger, and I am so proud of both of them for the men they have become. Happy Father’s Day!

“For the Lord corrects those He loves, just as a father corrects a child in whom he delights.” Proverbs 3:12

Commencement

Dear Class of 2014 (especially my two nieces who just graduated from high school),

As you listen to commencement addresses, you hear all sorts of platitudes about how to live your life. Some offer good advice, and you should pay heed. Despite all that you have learned in your education, you will learn so much more in life. Sometimes you will be prepared with the wisdom you have gained, but many times in life, experience will be your best teacher. I can confirm that truth from my own experience. Despite all I learned from my excellent education, nothing really prepared me for the most important role in my life as an autism mom. When I look at photographs of myself at your age, I see an innocent, wide-eyed, hopeful girl who had no idea what challenges she had ahead of her. Yet, raising a child with autism has made me do all those things your graduation speakers have told you to do—dream big, work hard, and never give up—in ways I never thought I could do.

Aside from just the day-to-day experiences of helping my son overcome the challenges autism has presented, I have learned valuable lessons from scriptures and country song lyrics that have reminded me what’s really important in life: patience, perseverance, presence, faith, hope, and love.

What no one tells you about life is that you’ll spend a great deal of time waiting for something—waiting for a phone call, waiting in line, waiting for something good to happen. While you wait, just learn to be patient, which will serve you well when you are waiting for situations to get better. As Amy Grant sings in “It Take a Little Time,” “It takes a little time sometimes to get your feet back on the ground. It takes a little time sometimes to get the Titanic turned back around. It takes a little time sometimes, but, Baby, you’re not going down. It takes more than you’ve got right now. Give it; give it time."

Part of that waiting process is plugging away and never giving up, especially when quitting would be so much easier. As I’ve watched my son struggle to do tasks that most people can do easily, he has taught me the value of perseverance. He knows that eventually he’ll accomplish what he has set out to do, and as he often reminds me, “Wait and see.” In the words of Leanne Womack’s beautiful ballad, “I Hope You Dance”: “Whenever one door closes, I hope one more opens. Promise me that you’ll give faith a fighting chance, and when you get the choice to sit it out or dance, I hope you dance.”

With all that waiting and working toward the future, we need to remember to savor the present, to appreciate all the good in the right now that we can easily miss worrying about the future. In her song “So Small,” Carrie Underwood offers good advice: “While you sit around thinking about what you can’t change and worrying about all the wrong things, time’s flying by, moving so fast. You better make it count ‘cause you can’t get it back.”

So how do we deal with all the worries in life? Faith will carry us through those times when we fear the unknown, the overwhelming, and truly terrifying.  Life with autism has strengthened my faith because I’ve learned that I cannot do things on my own, and faith has comforted me by assuring me God is in control. As Garth Brooks sings in “The River,” “There’s bound to be rough waters, and I know I’ll take some falls. But with the Good Lord as my captain, I can make it through them all.”

In those rough waters, faith carries us, but hope sustains us, reminding us that what may seem permanent is only temporary. As we look forward with anticipation, we know that things will get better. In the words of the Rascal Flatts song “My Wish,” “My wish for you is that this life becomes all that you want it to, your dreams stay big, your worries stay small, you never need to carry more than you can hold.”

While learning patience, perseverance, and presence will enhance our lives, faith and hope are vital to our existence. As the scriptures remind us, even greater than faith and hope is love. Without that overpowering force, our lives become meaningless. Love motivates us to help others, to be sacrificial, and to become the best people we can be for others’ sakes. Pure love guides us to do the right thing and reminds us that we’re never alone. As Lady Antebellum advises in their song “Compass,” “So let your heart, Sweetheart, be your compass when you’re lost, and you should follow it wherever it may go. When it’s all said and done, you can walk instead of run ‘cause no matter what, you’ll never be alone.”

Congratulations, Graduates, and as you step out into the “Real World,” I pray that you find patience and perseverance when you need it, enjoy the present, and remember to hang on to hope, faith, and love, which will always see you through any circumstance and help you fulfill your destiny in life.

“There are three things that remain—faith, hope, and love—and the greatest of these is love.” I Corinthians 13:13

Right Place, Right Time

I don’t believe in coincidence. Too many remarkable yet seemingly random things have occurred in my life that remind me the hand of God is orchestrating events for my benefit or so that I may do some good. For instance, when I was pregnant with Alex, I developed a rather rare autoimmune blood disorder causing my platelet count to drop, leaving me at risk for bleeding. (Thanks to the healing of God, I no longer have this chronic disease.) To rule out other conditions, I underwent a bone marrow biopsy, a procedure often characterized as quite painful. Thankfully, I found the experience did not live up to its hype and was more of a feeling of pressure than of pain. Unfortunately, my test results came back inconclusive, requiring a second bone marrow biopsy. At the time, I was frustrated that I had to go through another biopsy, but I was more upset that I would have to wait longer for results that would rule out a potentially life-threatening condition.

After the second biopsy, which was as uneventful as the first, the doctor asked me to take the sample to the lab myself, which struck me as odd at the time. When I arrived at the hospital lab, I explained to the clerk that I needed to drop off a bone marrow biopsy, which seemed to surprise and horrify her at the same time, and she quickly called for a technician to deal with the situation. As I waited for someone to take my bone marrow sample, a young woman appeared behind me and politely told me that she had overheard me tell that the clerk that I’d had a bone marrow biopsy, and she wondered what that was like. She wasn’t being nosy; she explained that her little girl needed to have one and had heard they were terribly painful. As a mother, she wanted to be able to prepare her child and was worried about what she might have to experience. At that moment I knew why I needed to have two bone marrow biopsies and had to carry the second one to the lab myself—so that I could reassure a young mother that her daughter, like me, would get through this testing fine. As she thanked me, I could see relief on her worried face, and I knew that God had placed me at there at the right moment so that I could be of help.

When Alex was hospitalized two years ago for extreme anxiety and aggression, we were terribly upset that he would have to be away from home for the first time in his life yet knew he needed intensive intervention to get better. While we waited in the emergency room for the nurse from behavioral medicine to come get him to admit him for in-patient treatment, I prayed for a sign that we were doing the right thing. As I looked up, I saw that the nurse, who became one of Alex’s primary caregivers during his hospitalization, was wearing her identification tag on a lanyard nearly identical to the one I wear for my job. Our lanyards, emblazoned with the name Jeff Gordon and number 24, show our support for our favorite NASCAR driver. I knew at that moment God had sent her to mother Alex in my place when he needed specialized care we could not give. That small sign in the form of a fellow NASCAR fan reassured me that everything would eventually be fine.

A couple of weeks ago, I was chatting with one of the technicians at the pharmacy where we get Alex’s medications. As she saw the name of the psychiatric nurse practitioner who prescribes his medicine, she told that she also worked part-time at a medical facility in town and had heard that Alex’s nurse practitioner was moving her practice here. A few days later, we received a letter from his nurse practitioner confirming what the pharmacy technician had told me: she is moving her office to our town this summer. This change means that we will no longer have to drive forty minutes to see her; she will only be ten minutes away from our home. While she could have moved her office to several towns in the area, she chose to practice here. I know this move was not coincidental; God made this more convenient for us.

Yesterday, I had another one of those being at the right place at the right time experiences. Every few months, we have to take Alex for routine blood tests to make certain the medications he takes are the proper dosage and are not affecting his metabolism adversely, especially his liver and kidneys. Fortunately, Alex eagerly anticipates blood draws; he never minds having medical procedures and finds them strangely entertaining. I think we have been blessed to work with medical personnel who have always been kind and gentle with him so that he has no fear of doctors and medical procedures. In addition, I’m always tried to schedule appointments carefully so that he never has to wait long, which can make him anxious. Fortunately, we have also found a nearby lab where their kindness and efficiency always makes blood draws easy for Alex.

When we pulled into the parking lot, Ed and I noticed that the car parked in front of us had an Autism Awareness license plate, which caught our attention. After the registrar quickly processed our paperwork, a lab technician whom we had not seen before treated Alex very kindly and seemed to know instinctively how to work with him, even though we had not mentioned his autism, as we often do. Once again, he made us proud as he handled the blood draw calmly, never complaining a bit. As we were leaving, we thanked the lab technician, who commented that she has a son like him. I then noticed that her identification card lanyard was decorated with the autism puzzle pieces logo and realized that she, like me, is an autism mom. We could have taken Alex anytime to the lab, which is open 24/7, but we were supposed to meet this mom.

While Ed and Alex went to wait in the car, I talked to her briefly, and we compared notes. Although her son is younger, she has experienced many of the same things we have. As she expressed some concerns about recently putting her son on medication, I was able to reassure her how much the same medication had helped Alex. In a matter of minutes, we had bonded because we shared a devotion to our sons with autism, and we could empathize because of our similar experiences. After she had asked me a few questions, I sensed that she wanted to talk more, but we both knew that we didn’t have the time right then to do so. I wrote down my e-mail address for her so that she could contact me, which she seemed to appreciate, and she told me to ask specifically for her anytime Alex needed lab work. Once again, I knew that this meeting was not random; God intended for two autism moms to come together to help each other. Although I am confident that God always directs our steps, whenever these “coincidences” occur, He reminds me that His plan for our lives is good, reassuring me that in the end, everything will be all right.

“…He makes everything work out according to His plan.” Ephesians 1:11

Looking Forward

As I mentioned in my “May Days” blog entry three weeks ago (5-4-14), Alex has been a little off this month. Suspecting that the ridiculously high pollen counts make him slightly irritable, we have tried to be especially patient and reassuring with him in recent weeks since he really can’t help his behavior. Nonetheless, his current obsession with bath time and his need to ask us repeatedly when he will take a bath every day has become tedious. Even though we answer him every time he asks, he still acts anxious. Since he responds better to verbal cues than spoken reminders, I have written reminders for him so that he can look at the memo instead of asking us. However, he carries this small slip of paper around the house with him and doesn’t always remember where he has put it. This creates a whole new level of anxiety because then he can’t find the paper with the time written on it and insists that we help him find his note instead of just writing a new one. Sometimes I think he deliberately “loses” the note just to watch us spring into action, searching the house high and low until we find it.

Yesterday Alex again started with repetitively asking what time he’d take a bath. After answering him several times and deciding that I did not want to spend my Saturday hunting for his reminder note, I came up with an idea. Having watched my middle school students (and a few of my colleagues who have imitated this concept) write reminders on their hands, I decided that I would write Alex’s bath time in the palm of his left hand. As I explained what I was going to do, he looked askance at me, yet also seemed fascinated. As I began writing 6:15 on his hand, I was reminded of the time several years ago when I came home from work to discover he had written dozens of pi digits on his foot and leg. When I asked him why he had done that, he nonchalantly explained, “Couldn’t find paper.”

Although I was a little worried that he might think that writing on himself was an acceptable alternative to writing on paper, “Desperate times call for desperate measures.” After I finished writing the highly anticipated time on his palm, he studied it and then asked me, “Is that a tattoo?” Having seen athletes with tattoos, Alex is not a fan of them and seemed concerned that I had permanently defaced his hand. I reassured him that it was not a tattoo because the numbers were temporary since the ink would wash off his hand when he did take his bath in the evening.

Throughout the day, we saw Alex checking his palm periodically to remind himself when bath time would be.  Not only thankful that this temporary tattoo reassured him and kept him from asking us the same question over and over, I was also feeling pretty proud of myself for coming up with a rather clever solution. At dinner, we watched him check his left hand a few times to view his reminder, which magically seemed to calm him. Still a bit concerned about the permanence of the ink, he asked when the numbers would be gone. I reminded him that they would wash off during his bath, which seemed to satisfy him. Then he asked us, “Is that something to look forward to?” As much as he found those numbers on his hand helpful, he was also looking forward to their disappearance, knowing that the event he was anticipating all day had arrived. Thus, I realized that Alex is even cleverer than I am because he’s figured out one of the best things in life—looking forward to something special.

At this time of the year when young people celebrate the end of the school year with proms, award ceremonies, and graduations, I feel a bit wistful that Alex has missed out on these celebrations. However, I’m grateful that he really doesn’t know what he’s missing and that he doesn’t fully realize what autism has denied him in life. For him, bath time, a seemingly ordinary event, is something to be anticipated and celebrated, a simple joy he savors. Even looking at the time written on his hand that reminds him of this upcoming event makes him happy. He doesn’t need a highly planned big celebration; little things in life that others would take for granted bring him contentment.

His ability to find spontaneous joy was evident this week as we watched the finales of the musical talent television shows The Voice and American Idol. At one point during The Voice, he suddenly and eagerly told me, “That’s my favorite song!” Although I don’t think he’d ever actually heard the song before, somehow it sparked an enthusiasm in him that made him smile and sway to the music. The next day, while we watched American Idol, he became equally enthusiastic as he recognized a familiar Fleetwood Mac song, which made him happily get up and dance. He had looked forward to the finales of these shows, and he wasn’t disappointed.

While I sometimes feel bad that Alex doesn’t get to experience the rites of passage most young people do, I realize that he also escapes many of the disappointments. For him, a relaxing bath or hearing a song he likes, familiar or not, makes him happier than going to a big celebration. Moreover, he has learned one of the great secrets of life—anticipation can be better than the actual event. As we wait with expectancy for Alex to make progress, we need to remember that looking forward to the future makes the wait easier. In the meantime, we should enjoy the seemingly small things that bring us happiness, as Alex knows. Looking forward is a good thing; maybe I should write that on my own hand.

“But if we look forward to something we don’t yet have, we must wait patiently and confidently.” Romans 8:25

Annual Waiver Meeting

This week, we had our annual meeting with Alex’s “team,” a group of professionals whom we have chosen to work with him to help him reach his potential, and we were very pleased with how well things went. In August 2012, he qualified for the state Medicaid waiver that provides services to people with intellectual disabilities. In our home state of Indiana, parents typically place their children on the waiver waiting list and know that they will likely wait for many years—often more than ten years—before their children qualify. Recently, changes in this program have made the process move along more rapidly to ensure that those who need services get them instead of having to wait for them. We were especially fortunate that Alex’s waiver application moved along at lightning speed, thanks to a caring and persistent caseworker who helped us with the process, my ability to organize paperwork efficiently, and the grace of God who saw our needs. When he was approved for the waiver within only three months of applying, we felt as though we had won the lottery because this approval essentially means that he is eligible to receive thousands of dollars of support each year of his life. Although we have always somehow managed to provide the therapies Alex needed through our own financial means, we were pleased to receive assistance and relieved to know that he will be taken care of when we’re gone.

Part of the process of obtaining the waiver is learning the alphabet soup of acronyms associated with the program: CIH, DD, ICF/IID, LOCA, etc. Although these abbreviations are probably intended to make referring to their concepts easier, they seem to create a wall between those who know them and those who don’t. During our quarterly meetings with Alex’s team, Ed has noted that he’s glad I understand the lingo, which make me feel as though I’ve mastered some sort of secret handshake. For instance, Alex receives funding from the Community Integration and Habilitation Waiver, more commonly known as CIH. The intention of this program is to keep people out of institutions and in their homes or residential placements within the community, such as group homes. This program was formerly known as the DD Waiver, or the Developmental Disabilities Waiver, but most autism parents knew it better as the Autism Waiver. The CIH is a type of ICF/IID Waiver, or Intermediate Care Facility for Individuals with Intellectual Disabilities; another is the FSW, or the Family Supports Waiver. An intellectual disability is defined as one that begins before age 22, is expected to continue indefinitely, impairs intellectual functioning and at least three of six additional areas: self-care, language, learning, mobility, self-direction, and independent living. To determine services needed, the LOCA, or Level of Care Assessment evaluates how much assistance the person needs with daily living skills. To qualify for the ICF/IID, the LOCA must determine that the person needs 24-hour supervision, as Alex does. To summarize, Alex receives the CIH Waiver, formerly known as the DD Waiver, a type of the ICF/IID Waiver, because his LOCA showed he needs constant supervision due to his autism. Of course, autism parents are used to all these lettered programs after years spent working with SLP, OT, PT, SI, ABA, IEP, and ACR for our kids with ASD. Frankly, it’s a wonder our kids ever learn language when they grow up hearing all the special needs jargon around them.

Aside from all the abbreviations and regulations, the waiver program is intended, like special education, to provide needed services to help the person overcome obstacles the disability brings. Just as the special education concept of “least restrictive environment” works to integrate special needs students in classrooms with typical students, the waiver is intended to integrate people with intellectual disabilities in the community by providing them with support to help them be as independent as possible. In special education, the annual case review (ACR) brings together those providing services for the child to assess progress and needs to determine what services should be provided, and the annual waiver meeting functions in the same way. For Alex, this means our family meets with his case manager who oversees his services, prepares his annual state budget for those services, and acts as an advocate, along with his behavioral therapist, music therapist, and a representative from the company that provides respite care. As in a special education annual meeting, basically everyone in the waiver meeting has an opportunity to make comments as the case manager takes notes and prepares the paperwork to guide service plans for the upcoming year, which requires several signatures of the participants. Even though the meeting took over an hour and required him to sign several electronic documents, Alex was remarkably patient and pleasant the entire time, which shows the progress he has made. In past quarterly meetings, he has complained of being tired or looked for ways to escape, claiming he needed to get something to drink or use the bathroom. Other than checking his watch from time to time, Alex seemed unfazed by having to sit through the meeting, and we were proud of how well he handled himself.

Besides being quite pleased with Alex’s progress, as evidenced by his behavior during the meeting and as reported by his therapists, we were reminded how fortunate we are to have found excellent professionals to work with him who genuinely care about him. The warmth of their interaction and their positive comments about Alex made us grateful that we have the support we need to help him develop the skills he needs in life. For years, we searched for the right people to work with him and often found no one who was willing or able to work with a child diagnosed with autism. Now we have a wonderful team who brings out the best in Alex and supports us as we guide him to develop his skills toward greater independence. After the struggles we have encountered in dealing with the obstacles autism has presented, we finally have professionals who know how to help, which comes as a great relief and a tremendous blessing. Knowing that God’s hand has led these people to us, we believe that He will continue to oversee Alex’s progress as he moves forward to fulfill God’s plans for his life, reassuring us that, in the end, everything will be all right.

“For He has not ignored or belittled the suffering of the needy. He has not turned His back on them, but has listened to their cries for help.” Psalm 22:24

Dear Alex

“Well, I’ve been afraid of changing ‘cause I’ve built my life around you. But time makes you bolder, even children get older, and I’m getting older, too.”—Stevie Nicks, “Landslide”

Dear Alex,

Twenty-three years ago, just before Mother’s Day, I found out that you would be coming into the world in the not-too-distant future. Well, I didn’t really know that it was you, but on an early spring morning, a home pregnancy test confirmed that my nearly lifelong dream to be a mom was coming true. In those months as you grew in my womb, I imagined the person you would be and thought of all the things I would teach you. In those blissfully naïve dreams, I never stopped to think that autism would be part of our lives.

In the early days, as you hit your developmental milestones on time, we reveled in your achievements and found those few quirks of yours amusing. Sure, you seemed more interested in books than toys, but we were certain that was because you were smarter than most kids your age. While I thought we would have to teach you to love books, you seemed to have inherited that interest from us as you preferred to pull our books off the shelves, studying them intently, to looking at your own picture books. Nonetheless, you sat patiently and happily as I read you Dr. Seuss and Little Golden Books and children’s poetry and fairy tales. Soon we were to discover that we didn’t need to teach you the written words because you had already figured out how to decipher them yourself, an amazing feat for a three-year-old. Once again, you had proven to us how clever you were, and we were pleased that you had discovered the joy of reading.

While you didn’t say much, you always seemed to be observing the world and taking in every small detail. After we were told you had autism, we had an explanation for some of the things you did and didn’t do, such as getting upset when the vacuum cleaner was turned on or why you didn’t point to things, but that label didn’t really change who you were, an easygoing obedient child. Basically, you were the happiest kid I had ever met in my life, and we were going to do everything we could to make sure you stayed that way.

When we decided to home school you, we wanted to provide you with an education that would help you succeed, and we thought that teaching you one-on-one was the best way to do that. Also, we wanted to protect you from teachers who wouldn’t try to understand you and from kids who would be mean to you. What we didn’t realize was how much you would teach us. While we taught you the traditional studies of math, science, social studies, and English, we also shared our interests in music, cooking, and sports, hoping to make you well-rounded. Most importantly, we wanted you to learn faith and kindness, and you took to these lessons well, making us proud. Despite frustrations that your fine motor delays made things “too hard for little hands,” as you’d tell us, you kept plugging away. Even though I like to think you inherited that tenacity from me, I’ve come to realize that you possess even greater determination, and that inspires me to keep going when I think I cannot.

Because you’ve shared your interests and the research you’ve gathered from books and the internet, I’ve learned about the stock market, NASCAR, astronomy, meteorology, and pi, none of which I would have cared much about, had it not been for the enthusiasm you have conveyed. When you talk about these beloved topics, your eyes light up, your face breaks into a smile that reveals those irresistible dimples, and you draw us into the sheer delight you feel. Sometimes you can barely contain your enthusiasm, and you don’t just walk away after the conversation; you “happy hop” away, a combination of skipping and galloping that shows that you’re still that happy little boy inside a young man’s body.

When you and I walk together in public places, I’m reminded that you are fully grown as you tower over me, but sometimes you slip into little boy mode as you reach for my hand. I’m never sure whether this is because you need reassurance that I’m there for you or that you are reassuring me that you are there for me. One of the good things about the way our life has gone is that you don’t seem to mind that you have led a sheltered life because you have needed protection from the world. You’ve never wasted time worrying about other people’s opinions of you, and your life has been more content for that. However, nothing makes us prouder than when people tell us that you have nice manners or are so sweet or have a great laugh or are very smart. Even though we know all these things, we always appreciate when someone else notices and tells us. You, on the other hand, just go on your merry way, not caring what anyone thinks of you.

Now that you are a young adult, we hope that we have taught you most of the things you will need in life, but we realize that we must help you to become more independent. While it’s easier for us to do things for you, we want you to be able to do things on your own. If we stand back and let you struggle, know that we believe you can do it yourself, and we’ll be right behind you cheering you on and lending a hand when you need it. As I have been your teacher, you have been mine, too—in fact, you have been the greatest teacher in my life. You have helped me develop my weakest quality—patience, taught me the value of hope, strengthened my faith, and made me love more deeply than I thought was possible. From the challenges that tested me and your childlike trust and innocence, I have become better, stronger, and happier, thanks to you. What mother could ask any more of her child? Thank you, my precious boy, for the gift you truly are.

Love always,

Mommy

“Yes, You have been with me from birth; from my mother’s womb You have cared for me. No wonder I am always praising You!” Psalm 71:6

May Days

Poet T.S. Eliot once wrote, “April is the cruellest [sic] month,” but I’d have to go with May instead. For teachers like me, the last month of school involves giving standardized tests and trying madly to finish teaching curriculum to students whose minds have understandably drifted to imminent summer vacation. With the stress of trying to accomplish too much in not enough time, colleagues become annoyed with those who don’t pull their share, don’t follow the rules, and don’t seem to care. Knowing that Alex is very attuned to my emotions, I try to keep any frustrations from work hidden from him, but I suspect that he senses my agitation at times. Also, every spring he seems to be a bit off, probably due to pollen in the air and atmospheric changes that occur in late spring. Needless to say, May brings challenges to both of us.

This week, the first of the month of May, Alex has been a little off. Although he doesn’t complain of any physical symptoms or show any signs of illness, he has been somewhat lethargic, preferring reclining to recreation. Usually when I offer to take him grocery shopping with me, he leaps up, ready to go because he likes going to the store. However, this week when I have suggested that we go shopping, he has suggested instead, “Daddy can go.” While I’d like to think that Alex is concerned about my doing too much and trying to shift some responsibility to Ed, I think he just prefers to stay home this week.  If, indeed, pollen is an issue, he is showing wisdom to stay indoors to avoid exposure to things in the air that bother him.

Despite not being one hundred percent, he had terrific sessions with his therapists this week. On Tuesday, his behavioral therapist heartily praised his work, saying he had a “wonderful” session, and on Thursday, his music therapist also told me that he had done very well. Nonetheless, Alex didn’t want to go anyplace this week and made excuses for not going whenever suggestions were made about going places. Yet, he seemed to be in a fairly good mood most of the time and revealed progress in unusual ways. One day, he kiddingly told Ed something implausible, and when Ed asked him if he was joking, Alex responded, “No, that’s hyperbole!” (This is what happens to children of English teachers; they use a literary term for exaggeration.) This week he also suddenly mastered using the toilet standing up instead of sitting, as he has insisted upon for all these years, and he seemed quite proud of himself for this accomplishment. Since he has been doing so well in various areas lately, we didn’t give his reluctance to go places much thought.

On Friday, we were to meet his behavioral therapist at Target, one of his favorite places to shop. After a quick lunch at the Target Café, we planned to walk around the store so that he could shop and practice his social skills at the same time. These weekly outings have been quite helpful to his development of practical skills and applying what he has learned during therapy sessions. As we ate lunch, Alex didn’t seem as enthusiastic about eating as he usually is, and he didn’t seem as excited about shopping at Target as he normally is. Nonetheless, he half-heartedly went along with the plans. When we decided to look for birthday cards for his cousins, our plans were deterred a bit because we found a woman had parked her shopping cart in the middle of the aisle and seemed oblivious that she was needlessly blocking the path. When Alex’s therapist sweetly said, “Excuse me,” the woman glared and barely moved her cart. As I could feel my annoyance rising, I fought my desire to tell her that she could benefit from learning some of the social skills my kid with autism practiced. Whether Alex picked up on my irritation or felt his own with the rude woman, he began to set his jaw in a way that I recognized as a signal he had had enough.

As I asked him what was wrong and tried to remove him from the aisle quickly, he told me that he was tired of waiting and flung his hand toward me. Putting to use my limited tae kwon do skills, I blocked his hand so that he didn’t make contact with me. Unfortunately, I didn’t grab his other hand in time, and he scratched his therapist in a rapid movement of frustration. Taking him by the arm, I quickly found a place where he could sit and calm down, and he cooperated with his therapist and me by following our directions. Fortunately, he de-escalated very quickly and apologized; unfortunately, his unacceptable behavior would have to be reported for his files. For all the weeks his behavior has been excellent, I knew that one moment would sadly mar his record of good behavior. As Ed noted in an analogy to the game Chutes and Ladders, for all the ladders Alex has been climbing with good choices and good progress, he had fallen down a chute in one moment of upset. Whether it was pollen, picking up on my work stress, or the annoyance with a rude shopper, Alex reacted in a socially unacceptable manner for one moment.

Thankfully, his therapist reacted with understanding and compassion, and she focused upon the positive aspects of Alex’s compliance immediately after the incident and his ability to calm down quickly. Having dealt with much longer and much more aggressive meltdowns with Alex in the past, I knew that this showed how far he has come. Also, his therapist noted that his behavior not only revealed progress in dealing with issues but also the clear need for continued therapy so that Alex doesn’t react in negative ways when he becomes overwhelmed. While he and I both felt bad about what had happened, she assured us that she was fine and that she understood he is still learning how to cope in a variety of situations.

Last night, Alex suddenly said to me, “I was worried.” Because he rarely initiates discussions about his feelings, I was surprised by this out-of-the-blue admission. Moreover, his issues with language make expressing himself rather difficult, especially when he is upset or when he is talking about abstract ideas. Although I wanted to press him to find out what was bothering him, I somehow sensed that he had told me all he could, and I respected his confession on its face value. As I tried to reassure him and explain that he needed to use his words to tell us when he is worried instead of using his hands, he seemed to understand. Maybe he’s ready to climb some more ladders this week; I hope so.

“Give all your worries and cares to God, for He cares about you.” I Peter 5:7

"Knockin' on Heaven's Door"

An old saying goes, “A steady knock wears the rock.” Over the years, I’ve discovered that raising a child with autism often needs that steady knock, requiring immense patience, attention to detail, and confidence that eventually the task will be rewarded as the old makes way for the new. For some time, dealing with certain behaviors of Alex’s has been consistent knocking, yet feeling as though we’re not making much progress. Lately, however, we’ve had that satisfaction of where we make sudden headway and truly see the end results in sight. These moments give us encouragement to keep plugging away and make us thankful that our efforts are worthwhile as we are moving forward.

In December, we increased Alex’s behavioral therapy sessions from once a week to twice a week with the hopes that the additional sessions would help improve his social skills. In working with his behavioral therapist, who is wonderful with Alex, we decided to dub these additional sessions “Fun Fridays,” where she, Alex, and I would go places and do things he enjoys. Our outings would be the equivalent of recreational therapy, which is designed to use skills in the community that have been learned in therapy, such as social skills and coping skills. In essence, these sessions require him to apply in the real world what he has learned in therapy. Before we leave for these outings, his therapist gives Alex a briefing, preparing him for things he may encounter and reviewing social and coping skills. She has made small cards with visual cues for me to carry in my purse in case Alex needs them that say things such as, “I can use my calming skills” and “Take deep breaths” and “Count to ten.” She also reminds him of common courtesies to use while we are out, such as saying, “Please,” “Thank you,” and “Excuse me.”

Overall, these Fun Fridays have gone remarkably well, and all three of us have enjoyed our outings to the library, the bookstore, and restaurants, as well as going shopping. As the weather gets warmer, we are looking forward to going to various parks to enjoy the outdoors. Several weeks ago, Alex decided that he really wanted to go to a local restaurant that is a retro-style diner, and his therapist and I decided that we would use that as a reward he could earn with good behavior over a month’s time. Actually, we had some concerns about how he might react to being in a restaurant that is typically quite crowded at lunchtime, and she wanted him to be able to order his own food, which required repeated practice over several sessions. However, he held up his end of the bargain and fulfilled his obligation to behave himself for the month, earning his trip to the diner for lunch. The day we took him for his reward lunch, the diner was completely full except for one table near the back. Although I had some trepidation about how he would cope with all the people and noise as well as having to wait, he handled the situation beautifully, even ordering his own food to his specifications: two Polish sausage without the bun and with grilled onions, cole slaw, and a medium Sprite. His therapist and I were pleased with how well the lunch went, and Alex really seemed proud of the reward he had earned.

Even with the progress Alex has made, thanks to therapy, medication for his anxiety, and healing that has clearly taken place, we still work on social skills that prove more difficult for him than most people. Like a small child, we constantly remind him to use social graces, such as thanking others for doing things for him. Despite modeling these behaviors for him and verbally cuing him many times daily, Alex, like many people with autism, doesn’t naturally think to use these polite phrases on his own. Last week, his therapist suggested that we try visual cues instead. Even though Alex will comply when we prompt him verbally, he hasn’t reached the point where he will say what he should on his own, and asking a twenty-two year old, “What do you say?” is becoming tedious. At first she suggested sign language, but Alex has always been resistant to learning signs in the past. However, I thought he might respond to numbers, and we tried holding up one finger for “Please” and two for “Thank you.” Immediately, Alex caught on to the system, which has worked like a charm. When I shared this new routine with Ed, he tried it with Alex, who correctly responded with the appropriate phrase for each visual cue. When Ed held up three fingers and teasingly asked Alex what that meant, without hesitation, Alex came up with his own clever idea, saying, “You’re welcome.” This simple and effective solution after years of trying to get Alex to use his manners has been the reward for us of that steady knock. While we wish we had thought of this idea years ago, we’re just thankful that he’s taken to the number system quickly and consistently and are hoping we can eventually phase out the visual cues so that he does what he should automatically.

As a reward for his good behavior and for faithfully responding to our one/two cues, we took Alex out to dinner last night at the diner he likes so much. Sitting in his favorite booth, where an album of Bob Dylan hangs on the wall (hence why we have dubbed this “the Bob Dylan booth”), Alex used his manners nicely and enjoyed his Polish sausage and cole slaw. He also liked listening to the oldies music playing in the background, correctly identifying the songs’ artists, including the Beatles and the Rolling Stones, thanks to Ed, who has taught him about classic rock as they have listened to music they both like together. At one point, Alex began swaying to the opening chords of a song he recognized, and he and Ed both smiled, knowing it was Bob Dylan, whom they love and I don’t. Suddenly Alex began to sing—perhaps applying the skills he has learned in music therapy—the words of the song, even more clearly and more in tune than old Bob himself: “Knock, knock, knockin’ on heaven’s door.” He continued to sing, unabashed and undeterred if he forgot a word, just singing every note and every word joyfully. To most parents, this would be no big deal, but for us, this showed us how far Alex has come. As Alex sang the entire song, I’m sure Ed felt pride as Alex sang the song of his musical hero, and I was moved to tears that our son who has struggled with speech and has lacked confidence in his ability to communicate could sing to his heart’s content. As I looked up on the wall, even Bob seemed to smile in bemusement; we just keep knock, knock, knockin’ and getting closer to heaven every day.

“And I say unto you, ask, and it shall be give you; seek, and ye shall find; knock, and it shall be opened unto you.” Luke 11:9

The Shining of the Son

“Little darling, it’s been a long, cold, lonely winter. Little darling, it feels like years since it’s been here. Here comes the sun. Here comes the sun, and I say it’s all right.”—George Harrison

After a winter filled with bitterly cold temperatures and seemingly constant snowfall, this week finally felt like spring has arrived with sunshine and warmer temperatures. Although we awakened to snow on the ground earlier in the week, we have seen the changes that give us hope that spring is on its way. Yesterday, Ed, Alex, and I went to an Earth Day celebration at our county fairgrounds exposition center and were pleased that we didn’t have to wear our jackets because the weather was warm and sunny outside. This Earth Day event brings together various businesses and organizations that set up booths promoting environmental awareness. Our reasons for going are less noble: with no admission charge, it’s free entertainment, especially for Alex who likes to see the animals included in a few exhibits.

As we wandered around the three buildings offering displays and information, Alex was pleased to see three turtles (which are his favorite animal), a rabbit, and two cats. Other than that, he didn’t seem particularly interested in much else, but he patiently made his way to see nearly all of the booths. Because he didn’t say much, we weren’t sure whether he was enjoying himself or not. When we got back in the car, we asked him if he’d had fun, and he said yes. Thinking this might be just a cursory answer, Ed asked him how much he liked the program, and we were surprised when he told us “one hundred percent.” On the other hand, he never asked us when we were going home while we were there, so he probably did have a good time. Certainly, we were pleased that he enjoyed the outing, but we were also delighted that his behavior was excellent the entire time.

Last year, when we took him to the same event, we had him ride in his transport chair the entire time. Because his medications made him fatigued and unable to walk very far without tiring easily, riding in his wheelchair was a better option. If he decided he wanted to go home, we could quickly and easily take him back to the car. In addition, we still didn’t completely trust that he could behave himself, and the chair allowed us to control his movement so that he couldn’t reach anything he wasn’t supposed to touch. Yesterday, however, he walked the entire time because his energy levels are returning and his behavior has improved significantly. At one exhibit for energy-efficient insulation, Alex was fascinated by the digital thermometers that showed the difference between good insulation and poor insulation by shining a heat lamp on the two. Even though he may have been tempted to touch the thermometers or the lamp to see how hot it was, he kept his hands to himself, which showed the progress he’s made in controlling impulsive behaviors. We can trust him because he has become trustworthy again.

Two years ago, Easter was a mixed celebration for us. Alex had been released from his first hospitalization in the behavioral medicine department and was home after nearly a two-week stay. We didn’t know then that he would need two more hospital stays that spring. While we were thankful to have him home, the memories of the anxious, aggressive, and destructive behaviors that led to his need for intensive intervention were still fresh in our minds. Frankly, we were still afraid of him and his potential for angry outbursts. As I chose Easter gifts for him that year, I was mindful of finding small items that were unbreakable, wouldn’t agitate him, and wouldn’t hurt if he hurled them at us. While reflecting on that period of our lives is painful, we are reminded of how much progress he has made in two years, thanks to medication, intensive therapy, and the healing power of God. Instead of being impulsive, Alex has learned to be patient. Instead of being anxious, Alex is content. Instead of being aggressive, Alex is gentle and sweet. When our lives felt hopeless, God sent us the help we needed, and now we appreciate the changes that have made Alex better and our lives easier and happier.

In reflecting on Good Friday this week, I thought about the suffering Christ endured and the sorrow those who loved him felt. Being raised Catholic, Ed grew up with crucifixes, the images reminding of Christ’s sacrifice on the cross. As a Protestant, I was raised in churches with empty crosses, emphasizing the resurrection instead. Both of us have great affection for the Christus Rex, the Christ the King statue in the Valparaiso University Chapel of the Resurrection. In this representation, Christ is on the cross with a king’s crown and both hands raised in joyful victory. Perhaps this image blends the religions of our childhoods and binds our belief in the hope and the joy of the resurrection. On a much smaller scale, we survived the dark days of sorrow, fear, and uncertainty, and God has brought us into the light where we have joy, faith, and hope for the future.

This week, Victoria Osteen, the wife of Pastor Joel Osteen whose sermons and inspirational books have strengthened my faith, posted online the following quote: “Resurrection teaches us that God will always finish what He started.” Sometimes I fret about what will happen to Alex, especially when Ed and I aren’t around to look after him. However, this quote reminds me that God isn’t finished with Alex yet. If we look back two years to the terrible times, and even a year ago to the still slightly unpredictable times, we see that God has led us to a time of contentment and peace. Only God knows what plans He has for Alex and us, but I do believe that His plans are for good. As we now seem to be moving in the right direction, we look forward with hope to see where God will lead us and how He will finish what He has started in our lives. Happy Easter, indeed!

"The Spirit of God, who raised Jesus from the dead, lives in you. And just as God raised Christ Jesus from the dead, he will give life to your mortal bodies by this same Spirit living within you.” Romans 8:11

Chili's Can't Take the Heat

“Sometimes good intentions just aren’t enough.” This quote from one of my favorite college professors has echoed in my mind this week in light of the furor over Chili’s restaurants bowing to public pressure. Last month, the family restaurant chain announced that as part of their Give Back Events program, they would be donating a percentage of their sales on Monday, April 7, 2014, to the National Autism Association. I’m sure they believed this was a good way to show support for Autism Awareness Month by supporting a major autism organization in April. However, they had no idea how much their good intentions would stir a public furor that was unnecessary, unfounded, and just plain nasty.

When Chili’s announced their philanthropic plans on Facebook, they unintentionally ignited a war of words as a heated debate arose on their Facebook page with people leaving comments regarding the causes of autism and threats to boycott Chili’s for their support of the National Autism Association. At the center of this controversy was the stance the NAA has taken upon the possible role vaccines may play in autism, as stated on their website: "The National Autism Association believes: Vaccinations can trigger or exacerbate autism in some, if not many, children, especially those who are genetically predisposed to immune, autoimmune or inflammatory conditions." This statement, which many parents of children with autism including myself believe is true for our children, arouses ire in those who fully believe that vaccinations are completely safe and have no connection whatsoever to autism.

While I certainly respect others’ rights to their opinions, especially if they have not witnessed autism first hand as I have, I don’t appreciate the name-calling tactics many of them use to support vaccine safety. The comments left on Chili’s Facebook page demonstrate bullying tactics, calling the so-called “anti-vaxxers” as “dangerous,” “irresponsible,” and even “nutty.” Those who choose to support their arguments by hurling insults lessen their credibility, especially when their comments include misinformation, lack of expertise, and grammatical errors.

After thousands of comments posted on their Facebook wall arguing about autism and vaccines, Chili’s made a decision: they caved under pressure. In announcing their decision to cancel their support of the National Autism Association fundraiser, they issued the following statement on their Facebook page: “Chili's is committed to giving back to the communities in which our guests live and work through local and national Give Back Events. While we remain committed to supporting the children and families affected by autism, we are canceling Monday's Give Back Event based on the feedback we heard from our guests. We believe autism awareness continues to be an important cause to our guests and team members, and we will find another way to support this worthy effort in the future with again our sole intention being to help families affected by autism. At Chili's, we want to make every guest feel special and we thank all of our loyal guests for your thoughtful questions and comments.”

Perhaps even more disappointing than the comments people left on Chili’s Facebook page and Chili’s decision to revoke their support was the gleeful reporting of this event in the mainstream media with headlines that lacked objectivity. For example, CBS Philadelphia proclaimed, “Chili’s Cancels Fundraiser With Group That Believes Autism Is Caused By Vaccinations,” followed by quotes presenting only the pro-vaccine side of the debate. Time magazine online was even less subtle with their position: “Chili’s Burns Anti-Vaxxers — and Probably Saves Some Kids’ Lives.” Similarly, Slate magazine published an online opinion piece by Phil Plait, an astronomer and father to typical healthy children, titled “Chili’s Reception: Restaurant Cancels Event With Anti-Vax Group,” in which he stated, “Last week, Chili’s made a mistake. The good news? They listened to reason and fixed it. The best news? It shows that reality can win out over nonsense if people speak up.” I’m not certain what has made Mr. Plait an expert on vaccines or autism, but I think that he, an astronomer, needs to remember that at one time in history people believed that everything in our solar system revolved around the earth and not the sun. Sometimes what is perceived as “reality” can in time be shown to be “nonsense.”

Until a clear cause of autism can be effectively proven, we need to investigate all possibilities and not discount any potential reasons, even if naysayers deem them nonsense. I often think of the scientists who discovered in the 1980’s that gastric ulcers were caused by bacteria found in the stomach. While their research proved true and made curing ulcers possible, these scientists were ridiculed and scorned for their theories that ultimately proved to be true. Perhaps a cure for autism will arrive in a similar fashion. If people want to think that my beliefs are crazy and dangerous, I can live with that, but I can’t live with not trying to discover why autism rates are rising rapidly. To accept this epidemic and not look for potential causes strikes me as truly crazy and dangerous.

When Chili’s bowed to public pressure and revoked their support of the National Autism Association, the NAA issued a gracious statement with no malice toward Chili’s or the critics whose verbal attacks cost the organization donations. NAA had planned to use these donations toward prevention and awareness of wandering, a common and dangerous issue in the autism community, since nearly half of children with autism wander away from places of safety, often with tragic endings. With regard to the Chili’s change in decision, NAA stated, “Thank you to all of our supporters, and thank you to Chili's for taking a chance on us. Though NAA has changed our mission and efforts in recent years to focus on autism safety, namely wandering prevention, controversial views about vaccines remained on our website. Because of guest feedback about these views, Chili's has opted to cancel tomorrow's event. We respect their decision and ask everyone to please speak words of love and kindness. NAA has evolved as our children's needs have evolved. Our Big Red Safety Box Program very much helps protect children and adults with autism from wandering-related emergencies. We will continue to provide boxes as funding becomes available.” Despite the hostility directed toward them, the NAA encouraged its supporters to speak words of love and kindness and made clear that vaccines were not the issue, the safety of children with autism is.

Honoring the request of an organization that does so much good for children with autism, I will say that I love my son with autism and appreciate those who show kindness to him. However, those who choose to attack autism parents need to know that we have literally and figuratively cleaned up enough messes, spoken for our kids who cannot speak, and fought the good fight. We won’t be silenced, and we won’t back down.

“God blesses those who are persecuted for doing right, for the Kingdom of Heaven is theirs. God blesses you when people mock you and persecute you and lie about you and say all sorts of evil things against you because you are My followers. Be happy about it! Be very glad! For a great reward awaits you in heaven. And remember, the ancient prophets were persecuted in the same way.” Matthew 5:10-12

Measurement, Memory, and Mathematics

“Five hundred twenty five thousand six hundred minutes/Five hundred twenty five thousand moments so dear/Five hundred twenty thousand six hundred minutes/How do you measure, measure a year?” –“Seasons of Love”

Yesterday, we took Alex to a family restaurant for dinner, and as soon as we sat in our booth, he realized that he had forgotten to wear his watch. In the past, he might have panicked that he didn’t have his watch to keep track of the time, and we would have had to leave immediately. However, he has learned to roll with things much better lately, staying calm and solving problems. First, he looked around the restaurant for a wall clock, but there was none to be found. Then, he decided he would just borrow one from us. In a scene reminiscent of “Goldilocks and the Three Bears,” he tried and rejected our watches. Ed’s watch had the wrong date, which was unacceptable, and my watch was too snug on his wrist. Finally, I handed him my cell phone with the digital clock showing on the screen, and this item, like Baby Bear’s porridge, chair, and bed, satisfied Alex, who found this substitute for his watch to be “just right.” Crisis averted.

As I have mentioned in previous blog entries, Alex makes sense of the world by measuring it and keeping records of statistics that matter to him. His favorite subject has always been math, and he possesses almost savant skills in working with numbers, enhanced by his amazing visual memory. From memorizing nearly 1500 digits of the irrational number pi to remembering people’s birthdates to calculating math problems mentally, he has a gift for remembering and understanding numbers. To assist him with measuring the important aspects of his world, Alex always keeps his measuring tools close at hand, which are among his prized possessions. Calendars, clocks, tape measures, calculators, and thermometers line his bedroom desk and chest of drawers, ready when he needs them. Because he relies upon them greatly, he has more than one of each type of measuring tool in case he mislays one of them and can’t find it. In addition, he keeps notepads and pens handy to record his measuring data.

When dealing with measurements, Alex values precision. If I tell him something costs six dollars, he will correct me and say, “Or $5.99.” If I tell him something will last about a week, he will ask, “Approximately a week or exactly six days?” When his behavioral therapist or music therapist arrives for his sessions, he immediately records their precise arrival time on a notepad as he consults his watch. Even though I have told him that they will be here around 1:00, he wants to keep track of the minute that they actually ring the doorbell. We have also learned not to dispute him when he proclaims certain information about when past events have occurred. For example, he likes to keep track of gasoline prices and will tell us how much gas cost in a particular year. Even when the figures seem a bit off, I never question them. Whenever I go online to check his accuracy, I discover that he is always right, and I find his keen knowledge of the history of gas prices a little eerie.

While some people with autism have amazing abilities to calculate days and dates, I don’t really think Alex possesses that skill. So-called calendar savants can be given a particular date and immediately figure out what day of the week that date was. Recently, my aunt and uncle came to visit from out of town, and Alex commented that my uncle had been born on a Sunday. My uncle didn’t seem to know what day of the week he was born, but trusting Alex’s confidence, he thought that fact was likely. After looking up my uncle’s birth date on a perpetual calendar in the almanac, I confirmed that Alex was right about what day of the week my uncle had been born. However, I suspect that Alex probably had also used the almanac as his source of data instead of calculating the day in his mind.

Nonetheless, Alex does possess outstanding mental calculation skills. A couple of weeks ago, I asked him how he had liked the dinner I had made. After quickly assessing his plate, he told me he liked it “91.6 percent.” Although we’ve grown accustomed to Alex’s percentage rating scale for meals, we were surprised by this odd figure since he usually rates foods in less specific figures, such as 90 percent or 85 percent. When we asked him how he had arrived at that number, he said, “Pasta 90 percent, sauce 90 percent, Italian sausage 95 percent.” As I was trying to add up and divide those figures, Ed, who is much better in math than I am (and from whom Alex has probably inherited his math skills), quickly confirmed the accuracy of Alex’s calculations.

Similarly, yesterday Alex was telling me that he had a “little voice” in June of 2004. Alex has a great fascination with people’s voices, especially those of children, whom he says have “little voices.” I suppose he was reflecting upon when his own voice changed. After I figured out how old he would have been in June of 2004, I commented that he would have been twelve and a half years old in June 2004. However, he corrected me by noting that he was thinking of when he was “12.482 years old.” Fortunately, he shows patience with my lack of mathematical precision, seeming almost bemused by my approximation.

At the restaurant yesterday when he was using my cell phone clock as a substitute for his forgotten watch, Alex noticed the message on the bottom of the screen and asked me what “232 service days left” meant. I explained that my phone service is “pay as you go,” and that I had paid for a year in advance and had that many days left before I need to renew my phone. He didn’t respond, but then he quickly said, “November 24^th.” Ed and I exchanged a look and then realized that Alex had rapidly calculated back to the date I had renewed my phone contract. When he said that, I remembered that I had signed up for a year of phone service around Thanksgiving, so his comment seemed likely. A couple of minutes later, Ed, who had been contemplative, commented that Alex was right because he had mentally calculated to see if Alex’s date was correct. The two of them astonish me with how quickly they can figure out in their minds the problems I need some time and a calculator to solve. However, I am grateful that not only has Alex inherited Ed’s math skills but that he also finds using numbers entertaining and satisfying, a way to make sense of the world that sometimes overwhelms him.

“Great is the Lord! He is most worthy of praise! No one can measure his greatness.” Psalm 145:3

One in 68

Last week, the United States Centers for Disease Control and Prevention released their newest statistics regarding the identified prevalence of autism spectrum disorders, and the numbers are staggering. According to their current data, one in 68 children has autism. Moreover, nearly five times as many boys have autism as girls do, which means one in 42 boys has been identified as having autism. As an autism mom who constantly does research on autism and as a teacher of thirty years who has witnessed the increase first-hand, I probably was not as surprised as most people were to see how common autism has now become. [To read the CDC report on autism prevalence, please click here.]

While the actual numbers are disconcerting, the rapid rate of increase should indicate something is clearly amiss. Specifically, in 2000, based upon the birth year 1992 (in which I would include Alex since he was born at the very end of 1991), the rate of autism was 1 in 150, as it was also in 2002. In 2004, the prevalence increased to 1 in 125, and in 2006, the rate increased to 1 in 110. Two years later in 2008, the statistics jumped to 1 in 88. Now the current research, based upon 2010 data of children born in 2002 has risen to the current rate of 1 in 68 children. I’m not a math whiz like Alex, but the increase in ten years from 1 in 150 to 1 in 68 should serve as a wake-up call that something is desperately wrong to cause such an epidemic of a lifelong disability.

As I read various articles this week that discussed the increased rates of autism, the seeming lack of concern in the mainstream media bothered me. I suppose some people think that if they don’t have a child with autism, this is not their problem. However, the CDC also shares economic figures that should concern our society. According to their data, the average medical expenditure for a child with autism is 4.1-6.2 times higher than that for typical children. These increased costs will affect insurance rates and will increase Medicaid spending for children who receive disability benefits. To put this economic burden into perspective, the CDC estimated in 2011 that the total societal expense for caring for children with autism would cost over nine billion dollars per year. With rapidly increasing numbers of children diagnosed with autism, this expense will only rise to even greater costs. Consequently, autism will impact everyone, either directly or indirectly.

On Tuesday, the beginning of April will mark yet another Autism Awareness Month, or as some autism groups prefer to designate it, Autism Action Month. With increased numbers of children who have autism, awareness should no longer be a real issue. However, action needs to be taken to help those affected with autism and to figure out what is causing the rate of autism to increase dramatically. Essentially, three areas need to be addressed regarding autism: cause, cure, and community resources.

Despite several years and billions of dollars spent on autism research, a clear cause of autism has not been established. While the medical community insists the increased vaccination schedule has had no impact on increased autism rates, the possibility that vaccines may be a contributing factor has not been ruled out completely. Even though doctors and drug companies assure parents that vaccines are completely safe and necessary, many parents believe a link exists between autism and immunizations. This month, an article entitled “Baby Monkeys Develop Autism Symptoms After Getting Popular Childhood Vaccines” described research done at University of Pittsburgh in which infant monkeys who were given childhood immunizations developed autistic symptoms while their counterparts who were not given vaccines did not. [To read this article, please click here.] Certainly, vaccines are important to public health, but their safety—especially in light of the autism epidemic—must be established. If vaccines are not a cause of autism, the medical community needs to find a definite cause of autism. As two of my close friends are pregnant, I have watched them struggle with making decisions regarding flu shots and whooping cough vaccines during pregnancy and their fears about how those shots could affect their unborn babies. Their doctors tell them these vaccines are important to protect their babies, but they worry if what is supposed to help their children could harm them instead. How can the medical community truly assure parents when they, themselves, have no good idea what really causes autism?

Another issue that must be addressed is curing autism. Even though adults with high functioning autism find this suggestion offensive, the vast majority of children with autism suffers from medical issues, such as digestive problems, has great difficulty communicating, and requires constant supervision to keep them safe, especially since nearly half of them tend to wander away from places of safety. Again, the mainstream medical community has offered very little to help these children and has often been critical of those doctors who recommend more holistic approaches, such as diet and nutritional supplements. As I have mentioned in previous blog entries, we have followed the work of doctors whose children have autism, knowing that they will aggressively pursue ways to help their children yet will not endanger them with risky treatments. More research needs to be done to find ways to treat and cure autism so that these children and their families do not need to suffer.

Finally, community resources need to be available now for those families who have children with autism, especially since no definitive cause or cure has been established. Critical therapies, including speech, occupational, and behavioral therapies, are expensive and often not easy to find. Because of the rapidly increasing numbers of children with autism, many agencies that offer these therapies have long waiting lists for services. Moreover, many families cannot afford the cost of these therapies and find themselves on waiting lists for years to receive state disability services. As children age out of the educational system when they turn 22, they will need adult services, which are even harder to find. For example, we have had Alex on a waiting list for a day program for nearly two years. Fortunately, our job schedules permit one of us to always be home with him, and we can afford financially for me to work part-time, which accommodates Alex’s needs. However, many families must make huge sacrifices to care for their adult children with autism as they wait for community services. Until a definitive cause and cure for autism is found, community resources must expand rapidly to address the autism epidemic and to be available to help these families dealing with autism.

One in 68 children has autism. One in 42 boys are affected. Something must be done to help these children, especially if the statistics continue their trend of increase. At what point will our society not just be aware, not just accept, but act? As someone who places much more faith in God than mankind, I keep praying for rescue for these children and their families, and I keep searching for answers that may help my child and others who are more than statistics—they are God’s children, too.

“Now rescue Your beloved people. Answer and save us by Your power.” Psalm 60:5

Family Restrooms

One of the nicest features about the town where we live is the variety of local parks. Recently, our city leaders have sought input regarding the renovation of two older parks and the expansion of the newest park. A group of parents in our community whose children have special needs have done research, discussed ideas, collaborated, and presented ways that these parks could better accommodate people with disabilities. From considering alternatives to mulch under playground equipment that would be easier for wheelchair access to investigating the best swings for special needs children, these parents have made requests that would benefit not only their children but also other children now and in the future who have similar needs. Besides accessibility to playgrounds, these parents have suggested that the parks offer family restrooms. Seeing the value of this concept, the parks department has indicated that the expansion of the newest park and the redevelopment of the old children’s playground will indeed include family restrooms.

While we are fortunate that Alex does not have major physical limitations and is toilet trained, we would have concerns about his using a public restroom without one of us being there to assist him. When we do things as a family, Ed could take him to the restroom if needed, but when I take Alex places by myself, I worry that he will need to go to the bathroom. Since he is now twenty-two years old and six feet tall, he wouldn’t be easy to sneak into the women’s restroom with me, but in an emergency, that’s what would have to happen. Trying to avoid this scenario, before we leave the house, I ask Alex repeatedly, “Do you need to go to the bathroom before we leave? Are you sure you won’t need to go while we’re out? Don’t you think you should go now? When did you last go to the bathroom? Are you positive you don’t need to go to the bathroom before we go?” After the barrage of questions, Alex usually just decides it’s easier to make a quick trip to the bathroom before we leave than to listen to my nagging. Still, I worry when the two of us are out in public that he will need to use the restroom, and I will have to figure out the best way to accommodate his need. Family restrooms would be the ideal solution for us.

In doing some reading about family restrooms, I realized that these facilities not only benefit children with special needs who require the assistance of parents or caregivers but also any parents of children of the gender opposite theirs. For example, fathers would prefer not to take their young daughters into the men’s room, but they may not be comfortable with their daughters going into the women’s restroom alone. Or, as in my case, mothers don’t want their sons going into the men’s room alone but realize that other women may not be comfortable with boys, or especially a young man, being in the ladies’ room. In addition, older people with disabilities may prefer family restrooms so that their spouses can assist them. With Alex we have two primary concerns regarding using a public restroom alone. First, his lack of social skills could make him vulnerable to a negative interaction with others. He could be easy prey to someone taking advantage of his gullibility, or someone may find his awkward behavior, such as not giving enough personal space, annoying or threatening. Another issue we are currently dealing with is his carelessness about making certain he pulls up his pants completely after toileting. Without our reminding and even help with adjusting his clothing, he could offend others by having his rear end partially exposed. Family restrooms could prevent any of those scenarios for us.

As this discussion regarding the addition of family restrooms in the city parks has evolved, parents of special needs children on a local Facebook group have noted and shared locations of family restrooms in the area, including stores, restaurants, libraries, and fitness clubs. This discussion has made me much more aware of family restrooms with the hopes that if I know where they are, I’ll never need to use one with Alex. Yesterday, we took him to the Indiana Dunes Visitor Center to view the various exhibits they have in conjunction with our nearby state park. As this was my first time to visit the center, I noted the various displays and amenities offered to visitors and was surprised to see that in addition to the restrooms for men and women, a third option was available—a family restroom. Although we didn’t need to use this facility, I was pleased that the visitor center offers this accommodation for those who do need it.

With the increasing rates of autism, more and more parents are going to find themselves caring for children and eventually adults with autism. As we try to integrate our children in the community by taking them out in public, we will need to have restroom facilities that accommodate their special needs. Family restrooms provide an ideal solution to the problem not just for parents and caregivers of special needs people but also for any parents who do not want their children to go to public restrooms alone. Until family restrooms become more common, I’ll keep badgering Alex before he and I leave for mother-son outings and keep my fingers crossed that we never have to sneak into the women’s restroom together. However, that could make an interesting blog entry.

“Two people are better than one. They can help each other in everything they do.” Ecclesiastes 4:9