Lessons from Special Needs Parents

This week I was surprised and pleased to receive a letter in the mail from an old friend and former colleague with whom I hadn’t been in contact for several years. Although he had been my teacher in seventh grade and later worked with me for many years, we lost touch after he retired from teaching and moved to another city to be near his children and grandchildren. Apparently, he decided to write to me after seeing the article about our family in the November 2012 issue of Woman’s Day magazine. [To read this article online, click here.] As the parent of a special needs adult himself, he shared that his son, who has cerebral palsy and is wheelchair bound, is currently living in a group home with three other men. He also told me that one of his son’s roommates is a young man with autism who is a Civil War buff and enjoys participating in Civil War reenactments. I think he wanted to prepare me for the eventual changes ahead when Alex will be away from home in supported living and to let me know that Alex will be all right, just as his son and his roommate with autism are all right.

His letter made me think back to when I first started teaching, a few years before I got married and a few more years before I had Alex. At the time, I was fortunate enough to work with him and with another parent of a special needs child; both of them were parenting teenagers with severe physical and mental challenges. My understanding is that his son was given too much oxygen shortly after birth that caused damage resulting in cerebral palsy. My other friend and colleague has a son who suffered a stroke during her pregnancy that left him with paralysis on one side and cognitive difficulties. Despite all their worries and responsibilities of caring for these children who were becoming adults, my friends didn’t complain or feel sorry for themselves. In fact, they have always been two of the most upbeat and optimistic people I know. As I got to know them better, I marveled at how well they coped with the challenges their children faced, and I wondered how they could ever be happy again once they knew their children had disabilities that would profoundly impact their lives and the lives of their families.

As someone who believes that God puts people into our lives for a reason, I have no doubt that God placed these two caring parents of special needs children in my life long before my child was diagnosed with autism. Knowing I would need role models and empathy, He placed them close at hand to provide me with the support I needed. Even though the original prognosis for their children was quite poor, with their parents’ love, devotion, faith, and hope, their children overcame obstacles doctors predicted they never could. Moreover, in trying to give their children many experiences in life, they took them out in the community to enjoy activities, such as concerts and sporting events. As I watched them with admiration, I was learning lessons I didn’t know I would need later in life when my own child was diagnosed with special needs.  Essentially, some of the most valuable things I’ve learned about raising Alex I’ve learned from two special needs parents and the examples they’ve set. Of course, both of them, who are quite humble about their roles as special needs parents, would say I would have figured out what I needed to know on my own, but I am thankful for what I was able to learn from them.

1. Create a “new normal.” My child may not play sports because of his disability, but he can go to sporting events and enjoy himself. My child may not play a musical instrument because of his fine motor issues, but he can learn to love music by listening to it. Instead of complaining about what he can’t do or how our family life is different from other families’ lives, we focus on what he can do and create our own traditions that have meaning for us. For instance, while going to the grocery store is a necessary chore for some families, for us it’s a fun outing because Alex enjoys it so much.

2. Have hope. Both of my friends chose not to believe all the limitations professionals placed upon their children. They focused on what their sons could do instead of what they couldn’t do. My friend whose son had a stroke prior to birth was told by doctors that he would never walk or talk. Not only can he walk and talk, he has a job and lives in an apartment by himself, and he has a wicked sense of humor that shows how sharp his mind really is. I give his parents, especially his mother, all the credit for how far he’s come. Seeing his progress gives me great hope for Alex’s future.

3. Have faith. Although both of my friends’ children have dealt with serious physical conditions, their parents trusted God at all times. Despite the horrendous financial strains on their family budgets because of medical bills, they had faith that the Lord would provide, and He did. They knew that God has always been in control, and their faith carried them through many difficulties, just as faith has carried us through with Alex.

4. Keep a sense of humor. One of the qualities that has always impressed me about my two friends is their ability to find humor in situations that others may not see. Frankly, our kids are funny, but not everyone sees how clever and amusing they really are. Often humor keeps us from crying in some circumstances, and laughter is always preferable to tears.

5.  Choose joy. While caring for a special needs child can be exhausting and frustrating, I’ve learned from my friends’ example to choose to be happy. Not only does this make each day easier, but that joy can be contagious and spread to those around us. Recently, a friend of mine commented that I was always upbeat, which made her feel that she could be upbeat, too. I took that as a tremendous compliment and felt pleased that she saw me as a joyous person.

In my previous two blog entries, I’ve written about parents of children with autism who apparently could not cope with the struggles and decided that death was preferable to life, leading to tragic outcomes. I only wish that they had been able to learn from the special needs parents who unknowingly acted as mentors to me. Perhaps with creativity, hope, faith, humor, and joy, they could have endured the struggles and enjoyed the rewards. I’m just thankful for my friends who shared their experiences as special needs parents so that I would be better prepared for being an autism mom. They truly are gifts from God.

“…For the joy of the Lord is my strength.” Nehemiah 8:10

Alex's Four S's

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

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

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

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

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

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

Adapting

Since my last few blog entries have been rather somber in nature, I thought I’d try to hit a lighter note and share some of the positive and amusing things Alex has done or said while he’s been in the hospital. Even though being in the Behavioral Medicine Unit should be a culture shock for Alex since he has led a rather sheltered life by spending his time almost exclusively with Ed and me, he’s adapted to being with other people amazingly well. In fact, the other day when we asked him about various staff members we sensed he especially liked, he told us that he likes “everyone at the hospital.”

He has formed bonds with some of the nurses who have taken especially good care of him. LeeAnne told me the other day that when he saw her arrive to start her shift, he came running toward her to greet her. However, he knew that he couldn’t come into the nurse’s station, so he stopped on a dime (As she told us, he stopped as though there were an invisible line he knew not to cross.) when he reached the entrance and just smiled at her until she came to say hello to him. Later in the week, Laura called to ask if Alex could drink Silk soy milk. Apparently, he had seen her drinking it and decided he’d like her to share it with him, as she had given him the organic bananas she had brought for her lunch another time. I think he wasn’t as interested in drinking the Silk as he was in just sharing a treat with her. She also said that he came over to her at one point and gently pulled her hair in a teasing, affectionate way, probably to get her attention. When she asked him if he’d tugged on her hair, he grinned and told her yes. Another nurse, Jennifer, who seems to find Alex amusing, told us that he has figured out the security code to open the supply closets on the unit, which she thought was pretty clever. The other day, apparently he decided to use the code to open the linen closet, and the staff couldn’t figure out who had opened the door until they saw Alex grinning, feeling smug that he had done it himself. She also thought it was funny that he likes to play Yahtzee with her as long as he’s winning, but if she’s winning, he doesn’t want to play any more. We’re thankful for the wonderful care these nurses are giving him as well as the kindness and understanding they show.

When we go to visit Alex every day, we try to think of topics of conversation that will interest him yet not upset him. Most of the discussion involves our asking him questions that he can give a yes or no answer. Sometimes, we try to expand his responses by asking him open-ended questions instead. The other evening, we asked him who the funniest person he knows is, expecting him to give his standard answer of “Bud”—the name he calls my uncle, whom he finds really amusing. After mulling this question, he surprised us by naming Ed’s sister’s husband, Alex’s uncle Jack, as the funniest person he knows. Apparently, he remembers Uncle Jack as pretty amusing because he laughed just thinking about him. When we asked him about another funny guy, a clown named Corky whom we saw at the county fair several years ago, this also made Alex laugh. The next day we asked Alex about a funny person he saw at the fair, anticipating he would tell us “Corky the Clown.” When we asked him, “What was the name of the funny guy you saw at the fair?” without missing a beat, he told us Grandpa. Since he had seen Grandpa at the fair, and Grandpa is a funny guy, this was a good answer that made all of us laugh. Although Alex’s hospitalization has been a stressful time for our family, his surprising ability to adapt and adjust to the changes has been comforting to Ed and me. For someone used to only being at home and to following routines he has developed over the years, Alex seems content to allow new caregivers to help him, and he likes the activities they have planned. At the end of a recent visit, Ed asked him what he was going to do later, whether he was going back to the day room to watch tv or stay in his room and read books. Alex thought for a moment, smiled, and said, “Wait and see.” As we anticipate and question what God holds for our future, we see wisdom and faith in Alex’s comment: “Wait and see.”

“And David said to his son Solomon, ‘Be strong and of good courage, and do it; do not fear nor be dismayed, for the Lord God—my God—will be with you. He will not leave you nor forsake you, until you have finished all the work for the service of the house of the Lord.” I Chronicles 28:20

Funny Remarks

As I mentioned in an earlier blog post “Comedian,” Alex has a surprisingly good sense of humor for a person with autism. While he likes to make people laugh by saying things that he knows are funny, he often makes us laugh by saying things that are unintentionally amusing. Part of what makes his comments entertaining is that he sees the world in a different way than most people do. For example, one time when he was little, he was being bothered by a fly on our back porch and decided to go inside to get away from the pest and the noise it was making. On his way in the house, he grumbled in disgust, “It’s too buzzy out here!” His description was not only onomatopoetic, but it was also funny to us. Similarly, when he was a little older, he was riding in the back seat of the car as I was driving, and he began complaining about a noise he heard as we backed out of the driveway. Because he was just muttering at first, I ignored his complaints until he became quite animated and yelled like a grouchy old man, “It’s getting really loud back here!” While I found his reaction amusing, I took his aggravated tone seriously, pulled back into our driveway, and discovered that the back wheel was coming loose from the axle. Alex’s irritation by noises alerted me to danger, but it also made me laugh from what he said to get my attention.

When Alex was a baby, I used to sing to him, as many mothers do with their babies. Unfortunately, I cannot carry a tune, and Alex was honest enough to let me know what he thought about my lack of singing ability once he was able to say a few words. One day when I was serenading him, he lifted his hand to my lips, shook his head, and said, “Mommy no sing!” To make sure I’d understood him correctly, I asked him if he liked my singing. He shook his head and told me most definitely, “No!” The earnestness in his face, combined with his comment and attempt to silence me with his hand, struck me as funny because it was true: Mommy no sing! (As the old saying goes, “Out of the mouths of babes.”) When he was a little older, he once again took on the role of being my critic. Lying on the couch feeling lousy with flu, I noticed preschooler Alex examining me with a concerned expression on his face. He told me, “Mommy doesn’t look good.” Pleased that he was showing sympathy for me in my illness, I told him that I didn’t look good because I didn’t feel good. He thought about that for a minute and studied my face a bit more. Then he had an epiphany: “How about some lipstick?” I guess he thought if I put on some makeup and looked better, I might feel better, too. Actually, he made me feel better because his comment made me laugh out loud—the medicine I really needed, even more than lipstick.

In addition to critiquing me, Alex has also made some amusing comments about his own appearance. While he generally doesn’t worry too much about how he looks, he does seem to care about his hair, combing it and letting me know when he thinks he needs a haircut. When his hair gets to be what he deems is too long, often because his cowlick begins sticking out, he’ll inform me that he has “crazy hair.” Revealing his scientific mind, Alex will tell us—in his inimitable way— when his hair is sweaty from running around playing that he has “condensation hair.” Although Ed has escaped having Alex make fun of his appearance and singing, he has been under Alex’s humorous scrutiny for the way he talks. Growing up in Indiana, Alex has developed a Midwestern accent, despite being exposed to my somewhat Southern drawl and Ed’s way of speaking, learned from his youth in Brooklyn, but less obvious over time spent away from New York. Fortunately for me, Alex thinks I talk normally, but he enjoys making fun of the way Ed says certain words. He’ll teasingly mock Ed for saying “dunky” for donkey, “maynaze” for mayonnaise, “alahm” for alarm, and “farin” for foreign. He can imitate Ed’s New York accent to a tee, which makes me laugh. I especially enjoy when he does this because usually Ed and Alex gang up on me and find it terribly amusing to make fun of me. As Ed explains to me, his teasing is simply a way of showing he loves me. I’m pretty gullible, but I like the explanation anyway. I suppose that Alex’s amusing comments about us, then, could be considered his way of showing love for us. If nothing else, he keeps us entertained with his funny remarks and his unique perspective on life.

“He will once again fill your mouth with laughter and your lips with shouts of joy.” Job 8:21

Comedian

Contrary to the stereotype that people with autism lack a sense of humor, Alex is really funny—at least we think so. Certainly, language issues and problems with social skills that people with autism often have would make humor, with its verbal irony and subtleties in facial expressions and tone of voice, more difficult. Nonetheless, Alex sees himself as amusing (98% funny on his own humor rating scale) and often lets loose with a delighted, uninhibited laugh. He also has a phony laugh that he uses for humor that would make most people groan; he’ll say, “Ha, ha, ha, that’s a joke.” Somewhere in between is his Ernie from Sesame Street chuckle, which sounds like a repetition of soft k sounds. Whether he intends his comments to be funny or not, he will join in laughing if others find his remarks entertaining. He truly enjoys making people laugh.

Like most kids, many of Alex’s funniest comments are unintentional. For example, when we’re watching NASCAR races, he doesn’t hide his disdain for the Busch brothers, Kurt and especially Kyle. If they crash their cars at some point in a race but walk away unhurt, Alex will gleefully say, “Kyle/Kurt Busch crashed! That’s okay; we don’t like him anyway!” Perhaps his blunt honesty is what makes this remark funny to us. When he was little and didn’t want to do a particular task, such as picking up his toys, he’d make us grin by giving the excuse, “That’s too hard for little hands!” During his adolescent years, he would get frustrated because I wouldn’t let him do everything he wanted to do. Having taught middle school for several years, I knew the importance of consistent rules, and this frustrated Alex, leading him to make the following observation that we found amusing: “Mommy’s bad words are don’t and can’t.” When he knew he’d been unable to persuade me, he’d repeat my words in a defeated tone, “I know, I know, ‘that’s too bad, Alex!’” Then he’d walk away, muttering, “She never changes her mind.” Recently, we asked him if he liked being an only child. He affirmed that he was happy to be the only child, but we questioned him in a different way, trying to see if he missed not having a brother or sister. He looked at us as though we were crazy and candidly said, “Mommy’s too OLD!” I guess he mistakenly thought we were considering adding to the family and wanted to make sure that wasn’t going to happen.

Even when he was little, Alex understood irony and could use his limited language to make jokes. For instance, he liked to be asked math problems, but he’d deliberately give the wrong answer, typically adding one to the correct answer. To illustrate, he’d tell us that the answer to two plus two was five. We could watch his eyes mischievously dart as he thought of the right answer, then add one to make it wrong, say the incorrect answer with a grin on his face, and then giggle as he watched our response. As we’d tell him to try again, he’d giggle even harder and say the wrong answer again. This was a fun game for him, and we liked watching him get a kick out of teasing us. Similarly he’d subtract ten years from dates, such as saying that he was born in 1981 instead of 1991. Of course, he knew the right date, but he liked to kid us by saying the incorrect one. When he was older, he thought it was funny to say ridiculous things just to get a response. Every time we drove past the small lake a few blocks from our home, he thought it was hysterical to say, “Just drive into the lake!” We’d hear him guffawing in the back seat, tickled by his own joke. A few weeks ago, he was pleased that he was able to make us genuinely laugh at one of his comments. Ed asked him why I don’t like Bob Dylan, who is one of Ed’s favorite singers. Alex grinned and said, “Because he sings like this…” then he launched into a decent imitation of Dylan’s incoherent warbling [my interpretation, not Ed’s], making both of us laugh out loud, which made Alex laugh, as well. If, indeed, “Laughter is the best medicine,” Alex’s entertaining sense of humor should keep us not only happy but also healthy.

“Then were our mouths filled with laughter, and our tongues with singing. Then they said among the nations, the Lord has done great things for them.” Psalm 126:2