Talking About Autism

Yesterday I read an interesting article on the Woman’s Day magazine’s website entitled “9 Things Never to Say to a Parent of a Special Needs Child.” [To read this article, please click here.] Citing comments that mothers of special needs children have had people actually say to them, the article suggests why these remarks might be offensive and offers alternatives that may be more acceptable. While I can understand why some of these comments might seem rude or hurtful or just nosy, I really think that most people who ask questions or make comments like these genuinely don’t intend them in a negative way. In fact, I believe that many people honestly want to help, but they may not know how. Having been an autism mom through toddler, teen, and now twenties phases, I have a little different perspective that has come over time, and I offer my thoughts on some of the comments the article deems taboo.

“Wow, you must be so busy.” The article describes this remark as having a condescending tone, which I personally don’t see. All parents are busy, and special needs parents often have additional responsibilities, such as coordinating various therapies for their children. Yes, I’m busy dealing with Alex, and I’m thankful for organizational skills that help me keep things rolling and make me a queen of multitasking.

“You should take care of yourself so that you can take care of him.” The article suggests that this comment is unrealistic because special needs parents are too busy and/or have too many responsibilities to take time for themselves. However, the analogy of the oxygen masks on airplane flights seems to apply well: parents must place the masks on themselves before putting them on their children. In order to help their children, parents must address their own needs, too. In fact, I have told other autism moms that they need to take care of their child’s mother; too often, we think we must always put our own needs last. Being a parent requires sacrifice, and being a special needs parent requires additional sacrifices. Yet, we cannot take care of our kids if we are not at our best.

“We’re only given what we can handle.” This comment, which is often enhanced with religious significance by attributing the giver as the Lord, is described in the article as being a “meaningless platitude.” I suspect that parents who find this comment offensive either feel uncomfortable that they are perceived as stronger than other people, or they don’t appreciate viewing their child’s disability as a test from God. On the other hand, this statement is likely intended as a compliment and a reassurance that they can cope with the obstacles that come with raising a special needs child. I’ve always liked Mother Teresa’s quote about dealing with difficulties: “I know God will not give me anything I can’t handle. I just wish that He didn’t trust me so much.”

“Have you tried…?” According to the article, this comment annoyed parents who didn’t appreciate advice from others who were not special needs parents. One mother remarked, “You have no idea what you’re talking about.” Although other people may not have first-hand experience, I appreciate when others show interest and care enough to share research or information they have found on autism. Because I have spent so much time researching autism, I usually have already heard about the information, but I’m happy to discuss it and look for new insights. Over the years, we have tried a variety of approaches hoping to help Alex, and I’m always on the lookout for something that we may not have tried yet. Instead of viewing that question as intrusive, I see it as helpful.

“What’s wrong with him?” While I tend to agree with the article that this comment is probably rude and nosy and certainly could be phrased better, I think that the motive behind it may be concern. Maybe I’m not as offended because I’ve asked the question about Alex myself in frustration, fear, and/or bewilderment. In fact, in moments of impatience, I admit that I have asked Alex, “What is your problem?!”  And then I remember he can’t help what autism has taken away, which motivates me even more to attempt to regain what has been lost and to appreciate the progress he has made in spite of the obstacles. That keeps me busy as I try to take care of Alex and myself, remembering that I can handle all things through Christ who strengthens me, and as I try different ways to eliminate what’s wrong to make him the best he can be.

“But you belong to God, my dear children. You have already won a victory over those people, because the Spirit who lives in you is greater than the spirit that lives in the world.” 1 John 4:4

Preparing for Middle School

This past Friday marked the end of the first semester for my students as well as the halfway point of the thirtieth year of teaching for me, all of which I have spent at the same middle school teaching seventh grade English. Thanks to wonderfully understanding and supportive administrators, I have been able to balance my teaching career with being an autism mom because I only teach three classes in the morning and am home with Alex the rest of the day. While I’m at work, Ed, who teaches afternoon classes as a college professor, takes care of/supervises/entertains/teaches Alex. Through the years, we have realized how blessed we truly are to have jobs that allow us to spend so much time with our son.

Friday also found me sitting in the dentist’s chair having my semi-annual appointment for cleaning and checking my teeth. In chatting with my dental hygienist, she confided that she’s concerned about her son (who has no special needs) starting middle school next year, even though he does quite well in school. Knowing that I teach at the middle school where her son will attend, she began asking me questions about the school that I was happy to answer for her. Apparently, I was able to reassure her that our school is a welcoming place and to allay some of her maternal fears because she told me that she felt much better after talking with me. In return, she assured me that the tooth I need to have crowned will not need a root canal, so I felt better, too.

Yesterday, I was chatting online with an autism mom friend whose child will also be attending the middle school where I teach next year. Feeling déjà vu, I had a conversation with her that was quite similar to the one I’d had with my dental hygienist the day before. Sometime we autism moms forget that all moms have worries about their children; ours are just amplified a bit as we try to protect our more vulnerable children from the world. The same topics of concern arose—opening lockers, navigating hallways, and changing classes and teachers. Another issue both moms mentioned was the major change of going from a small elementary school to a large middle school with an enrollment of over 800 students. Understandably, parents worry that their children—especially special needs children—could get lost in the shuffle.

In preparation for her child to start middle school, my friend has spoken with a special education teacher who offered several good suggestions to help make the transition easier. The teacher recommended requesting that her child have a locker next to the homeroom teacher who could provide extra help, asking for more time to move between classes if needed, having the child’s teachers sign the assignment notebook to ensure accuracy of recording homework, and allowing the child to go to the guidance counselor whenever the child feels overwhelmed and needs a break. As I told her, our school quite commonly makes these accommodations for students with special needs, and she should make certain to communicate with the school ahead of time to put a plan into place before school starts next year. Moreover, I told her, as I had told my dental hygienist the previous day, that many parents help their children by giving them the opportunity to practice before school starts. Specifically, many parents bring their children to school in the summer and help them find the location of their classrooms so that they don’t have to worry about that when school starts. Since lockers can often frustrate sixth graders, parents also often help them learn their combination and how to work the dreaded dial on their lockers in the summer, allowing them to master this skill before the first day of classes. For many students, rehearsal eases their fears and makes them feel better able to face the changes of middle school.

Many parents discover that communication with teachers may become more difficult when their children reach middle school because they have several teachers instead of one. However, many schools offer e-mail, phone, and voice mail access to teachers, and parents should contact teachers regarding concerns. In addition, many schools offer online web pages where they can access their children’s assignments and grades, and parents can easily keep track of what their children are doing and how they are doing. Using these tools to communicate can prove vital to parents, especially since middle school students sometimes communicate less with their parents and don’t always volunteer information readily, as they may have during their elementary school years.

While all parents can help ease the transition to middle school by preparing and practicing with their children and opening lines of communication, special needs parents have the additional responsibility of advocating for their children, who may not be able to advocate for themselves. Of course, teachers have an added responsibility to be flexible in dealing with children who have special needs to help them be successful in overcoming the obstacles they face. Many years ago, I had the opportunity to hear a presentation by veteran teacher and dynamic speaker Harry Wong, who influenced my approach to teaching early in my career. He spoke of how important the first day is to students and how teachers need to prepare for that first impression. As he elaborated upon seven things students want to know on the first day of school, one in particular resonated with me: “Will the teacher treat me as a human being?” As more and more students are diagnosed with autism and more students are mainstreamed into regular classrooms, teachers need to recognize that those children are more than their labels, and we must treat them as human beings. In dealing with high maintenance students of all types, I often stop and think how I would want a teacher to treat Alex and try to muster all the patience, compassion, and fairness I would want shown to him. While middle school can be a tough time for all—students, teachers, and parents—with some preparation, practice, communication, and understanding, fear of the unknown can give way to excitement for new experiences and amazing progress. In the end, as in all times of change in life, things nearly always turn out better than we expect.

“Their purpose is to teach people to live disciplined and successful lives, to help them do what is right, just, and fair.” Proverbs 1:3

Eventually

“Eventually all things fall into place. Until then, laugh at the confusion, live for the moments, and know everything happens for a reason.” ~ Albert Schweitzer

Last week, on New Year’s Day, Alex asked me to take his temperature. Since he hadn’t shown any symptoms of illness, his request surprised me. However, he frequently asks me to use our home electronic blood pressure cuff to take his “vitals,” which is his favorite part of any visit to the doctor when they check his blood pressure and pulse. His interest in his vitals probably comes from his fascination with medicine and numbers. At the time, I thought perhaps he was just interested in his current medical statistics. What surprised me more was that he was indeed running a slight fever. Amazingly in tune with his own body, Alex probably knew he was running a fever before I ever took his temperature. Over the next few days, he continued to run a low-grade fever for no clear reason. Last Saturday, before the big snowstorm, we took him to the Minute Clinic to make sure there was nothing seriously wrong with him in case we were snowbound for a few days.

After checking all his vitals and examining Alex, the nurse practitioner ruled out ear infection, sinus infection, and flu. His lungs were clear, his abdomen was normal, and his glands were not swollen. Since he wasn’t cooperative about opening his mouth wide and saying, “Ahhh,” she could not rule out strep throat. However, he hadn’t complained of a very sore throat, so I thought a throat infection was unlikely anyway. While we were glad to rule out certain illnesses, we still weren’t positive why he was running a slight fever, but I suspected he either had a virus and/or was showing signs of yeast die-off because we had recently changed his anti-fungal medication. When medications for yeast are working too well, symptoms similar to flu—fever, nausea, achiness, etc.—can arise, and we had seen similar die-off reactions in the past. Nonetheless, every day several times a day, I took Alex’s temperature last week and hoped that his fever would return to normal.

Each day as I waited with anticipation that his fever would return to normal, I knew that eventually, his fever would subside. On Wednesday, exactly a week after he had first asked me to take his temperature, the digital thermometer finally registered a normal temperature for him. This past week has made me think about the power of eventually, something that has taken me over a half-century to understand. As someone who likes to plan and schedule, the uncertainties of life, such as when fevers will return to normal, make me anxious. As long as I know when things will happen, I roll along nicely, but life offers too many situations that require patience, and more importantly they require faith. Yesterday, Joel Osteen Ministries posted a quote on Facebook that really hit home for me: “God doesn’t ask you to figure it all out; He only asks you to believe.” As I told my sister-in-law yesterday, I’m sure that God probably gets tired of my “helpful” suggestions.

In raising a child with autism, I have found that most of life is waiting: waiting for developmental milestones, waiting for appointments with professionals, waiting for annoying stages to pass, and waiting to see what the future holds. While all parents must deal with these times of waiting, having a child with autism often requires more waiting than usual. Although I’m constantly trying to put together all the pieces to help Alex, I’ve found that the most important thing I can do is just believe that everything happens for a reason, and eventually everything will work out in the end. When I’m frustrated because things aren’t happening on my timetable, I look back on Alex’s accomplishments, some of which I thought would never occur. However, eventually, he learned to speak. Eventually, he learned to use the toilet independently. Eventually, he slept through the night. Eventually, he became less sensitive to sensory stimulation. Along with all these major milestones, I can see smaller steps that eventually came, as well.

Nonetheless, we continue to look toward the future and wonder what eventually lies in store for Alex. Will he eventually learn to tie his shoes? Will he eventually have a job he likes? Will he eventually live independently? Will he eventually be healed? As much as I’d like to micromanage his life, I have to take a breath when the fears of the unknown overwhelm me and just believe. Interestingly, Alex never worries about such things. In fact, he often tells us, “Wait and see.” Like his favorite animal, the turtle, Alex just keeps moving through life at his own pace, knowing that like the tortoise in Aesop’s fable, “Slow and steady wins the race.” Rarely does he get discouraged, and he sets a good example of how we should approach life—with faith and patience and without fear. Eventually, I will stop trying to figure out all of life’s mysteries and learn to live in the moment, as Alex does. Eventually.

“For all that is secret will eventually be brought into the open, and everything that is concealed will be brought to light and made known to all.” Luke 8:17

Preparing for the Storm

Here in Northwest Indiana, we are under a winter storm warning with predictions of a foot of snow to fall on top of the foot of snow we already have on the ground and with warnings of dangerously—perhaps even record—freezing cold temperatures. Yesterday afternoon in the so-called “calm before the storm,” I, like many other people in my town, was out running errands in preparation prior to the possibility of being snowbound for a day or two. I’m always amazed by how weather forecasts motivate people to follow a predictable pattern of heading to the grocery stores for food, gas stations to fill automobile tanks, and discount stores for weather-related supplies. What puzzled me, however, was the ridiculously long line at the car wash. Why people wash their cars just prior to snowstorms and freezing temperatures is a behavior I just don’t understand.

Taking the last available grocery cart, I scoured the crowded aisles for things we might need if we couldn’t get out of the house for a couple of days.  With Alex’s gluten-free and milk-free diet, I am always aware of having food on hand that he can eat. Making certain we had plenty of rice milk, eggs, applesauce, rice, and vegetables, along with special gluten-free and dairy-free pasta, cereal, and bread, I figured that he will have plenty of good things to eat. Alex has a habit of asking for specific foods right after we return from the grocery store, so I was careful to think of any foods he’d requested in the past few weeks to make certain we had them all here at home. In addition, I checked all of his medications to make sure we have enough to last the week. Of course, I also bought another package of Epsom salt. [Please see last week’s blog entry for an explanation of that current favorite.] I even made sure we had plenty of “C” batteries to run one of his favorite Christmas gifts, a projector that shines star constellations on his bedroom ceiling at night so that I can honor his nightly request “to see the stars.” After making my lists and running my errands yesterday afternoon, I felt fairly confident that we were ready for the big snow.

Last night on Facebook, people posted updated weather forecasts and warnings from state and local agencies reminding people to prepare for dangerous conditions. One particular post from the Indiana Department of Homeland Security caught my attention with its recommendation for a household emergency preparedness kit and detailed explanation of what this kit should include. They suggested food and water for several days; battery-operated or hand-crank radio and flashlight (along with extra batteries) in case of power outage; warm clothes, blankets, and sleeping bags; and special items that may be needed, such as medication. Former Girl Scout that I am, I have already made certain that we are prepared and have all of those items handy.

As I considered these wise suggestions, I realized that having a child with autism means constantly being prepared for an emergency. When we take Alex places, I often take along a tote bag I always keep packed with a complete change of clothes in case he spills something on his clothes so that he doesn’t get upset. In my purse I always carry Alex’s state identification card and anti-anxiety medication in case of emergency. Whenever we take him for medical tests or appointments, I bring along a red folder that includes lists of the medications and supplements he takes, a copy of his legal papers naming Ed and me as his medical health care representatives, and a listing of all the names, addresses, phone numbers, and fax numbers of the professionals who work with him. Having this important information readily at hand has saved time on a number of occasions, which makes our lives easier. In addition, just as flight attendants point out during their emergency preparedness spiel at the beginning of every flight, Ed and I always know the location of the nearest exits in case we need to make a quick escape from a public place when Alex becomes overwhelmed. Since we are constantly prepared for the any situation, a snowstorm doesn’t faze us a bit.

In their weather preparedness announcement, the Indiana Department of Homeland Security offered the following advice: “Families should also take the time to check with neighbors and see if there’s anything they can do for each other before, during, or after the storm.” I really like this spirit of people pulling together during the tough times. Moreover, I think this is good advice for all times, not just in emergencies. Often, families who have children with autism feel isolated and even abandoned; they may appreciate others checking on them before, during, or after the frequent storms autism brings. I know that I have always been grateful for family and friends who have genuinely offered, “If you need anything, call me.” Even though I’m usually prepared enough and too proud to take them up on their offers, I appreciate knowing that I do have their support and could rely upon them for help if needed.

With plenty of food in our kitchen, a crank-operated emergency lantern/radio, flashlights, batteries, and warm clothing and blankets, we’re prepared to hunker down until the snowstorm passes. Our cars have not been washed, but the gas tanks are full, not that we plan on going anywhere today. As Hoosiers (two by birth, one by living here thirty years), we’re used to the cold and snow, and from living with autism, we’ve become a hearty trio who prepares for any storm and feels thankful when we come through them safely. May God bless all in the path of storms and keep all of us safe and warm.

“Each one will be like a shelter from the wind and a refuge from the storm, like streams of water in the desert and the shadow of a great rock in a parched land.” Isaiah 32:2