My son has a unique set of feet. One foot is size 6 children's, and one is size 7 adult's. The difficulty in finding a good fit goes beyond heel to toe. In many ways he gets stuck between boy and man. This might be truer for him because he has Down syndrome (DS). Yet, I'm sure many teen boys teeter between boyhood and manhood. Sometimes it's fun to be a kid; other times boyhood gets brushed aside like frogs and slingshots do. At 15, my son communicates his divided nature easily. He wants to "quit homeschool, move, get a job, and be a man." Where? Virginia City, Nevada, of course—on the Ponderosa. Then he can ride, rope, and get bad guys with Adam, Hoss, and Little Joe.
Two responses prevailed when our son was born. The first—take him home and just love him. He's like any child. (No, he's not, and neither are my other children.) The second response—make him the best he can be—sounded reasonable. I determined to do everything I could to give him every advantage. The incredibly messy high chair tray and floor beneath it resembled Jackson Pollock art more than the usual dinner table scene. The daily disaster was overlooked in the name of sensory input and learning independence.
There was an awareness of the need to create opportunities for learning. The mantra "shouldn't he be all that he can be" sounded more like an Army recruiting ad than a guide for caring for a baby, but it made some sense. After all, he was hours old when I heard about physical therapy, occupational therapy, sensory issues, medical tests, cardiac surgery, ear tubes, education, support groups, genetic tests, diets, and therapy to help him be more "like the other kids." Of course we took him home and loved him. I also was bent on pushing back some of his disability and helping him achieve.
Then my second child with DS was born, and some of that therapy/achieve philosophy was lost on me. Yes, I wanted to optimize abilities, facilitate learning, and give her opportunities, but I also started thinking . . . just love her. You see, I came to realize that boarding the achievement train sometimes can get us parents off track—with typical kiddos and special kiddos alike. Somehow I had started thinking love means make them the best.
Imagine if your spouse wanted to make you "the best you could be." Imagine if your spouse viewed you as someone who needed to work on "meeting her full potential." Motivation might be great, might be, but the pressure could derail you.
In our home we have the philosophy that no single family member is more important than the family as a whole, although some have more demanding needs at times. Trying to meet all our children's perceived needs would tap us out and distract us from the bigger picture. We had to define "success" and not let others do it for us. We also saw that our children were developing quite well in their natural environment, with our guidance and occasional professional recommendations. Much therapy is natural and can be incorporated into daily life. Of course we stay on top of medical issues. For our family, frequent outside intervention has not been necessary; for some families it is.
Some within the special needs community believe more—as in intervention and treatment—is better. This is why some 6-week-olds are in "school" all day. In the special needs community, some see the phrase "being realistic" as negative and possibly denying the child a chance. Some see it that way; I don't. I see realism as the ability to evaluate the child's unique strengths and weaknesses and make decisions accordingly. Work and effort yes, but learning to be content with limitations offers an individual more respect than a life of striving.
Seasoned moms say to first-time moms, "Relax. You don't really need to wash and dry between each toe daily." When I was a baby, my mom was happy just to find me quietly sucking on my big toe. Not today. There is a lot of responsibility if you want to be a modern baby—demands, pressure, organic diapers, Mozart, French immersion, gymnastics, Robert Louis Stevenson before bedtime . . . all before the 6-week checkup. You'd think baby was preparing for college, not for cutting a tooth or mastering the donut stacker.
Some mothers should be enjoying babies and instead are fretting when their typical 12- to 15-month-old is not putting words together, like that other baby does. Mothers whose children have special needs are not immune to "compare and despair" tendencies that plague moms. We sometimes compete as we measure our children against typical and other special needs children. We may get caught up in achievement and let others define success. Instead of looking to Dr. Baby Genius books series, we need to assess what is best for our individual child.
Our children with Down syndrome provide some practical examples. Because most children with DS have low muscle tone, it's not uncommon to see a child with tongue thrust. For many children the "tongue out" posture is a natural, comfortable position. Most children can be taught proper placement. Appearance influences perception, and socially a tongue belongs in the mouth. Besides low tone, our daughter with DS has a very small mouth. When she tucks her tongue in, as she will on request, she tucks it behind her teeth, which has caused some tooth protrusion—not acceptable. We've seen multiple specialists. Physiologically her tongue does not fit. We have two options: tongue reduction surgery or living with it. Besides the obvious pain and risks, we don't know how this surgery could impact function. There are no definitive eating and speech studies we can find that suggest likely surgical outcomes. For a child who is deaf in one ear, we are content with her speech and don't want to jeopardize it.
Well-meaning folks have made comments that suggest "therapy" could fix her problems. Some have inferred it is negligent to "ignore" tongue thrust, because of the stereotypes. We want our daughter to do well! As parents we have to determine what is best, and we have decided this is something we will live with unless better options arise. And we won't pester her to pieces (except when we take photos!).
At age 10 our son was reading very well but started stumbling. After four years of perfect vision checks from prestigious institutions, help from a vision therapist, three doctors, and a glasses recommendation (which our son insisted did not work), we still saw regression.
Upon visiting yet another doctor for a routine medical eye exam, the doctor insisted glasses were useless. Our son needed eye surgery. A second opinion concurred. For years our son displayed signs of a V pattern strabismus that went undiagnosed. He even displayed typical V pattern posturing: head down looking up at people as though he were scowling. (We thought this was behavioral!) He was using adaptive behaviors to try to see well. While our son's vision was 20/20, he had to strain/posture awkwardly to line up images, and only cutting and suturing two muscles in each eye could possibly change that.
We knew that we owed it to him to get the cardiology clearance and have the surgery, despite our dread. Two similar surgeries, in that each could be considered elective or necessary, were recommended, but each had to be weighed. Unlike his sister's outcome, we decided the best choice for him was intervention.
Success is defined differently for every child. Decisions are different for every child. We have to evaluate the long-term benefits in the larger scheme. It may appear we don't do enough. We may get some criticisms. But there are times to let go of the pursuit of what the world calls excellence in favor of what is best. One of my special needs children makes miniscule gains in math despite effort year after year. There are success stories about children with DS who use math in a practical way. For my child, I'm okay with her having a twenty-dollar bill or a credit card (with a low cap) when the time comes for her to have a greater measure of independence. Math is not going to get in the way of the things that are truly important. There are things to give up, and I suspect math is one of them!
Of course this does not mean we give up tough things. We parents of children with special needs must be a bit more deliberate. Our children may need more nudges and opportunities to help them achieve. The prevailing doctrine, i.e., they need every advantage and we must not fail them, sets us up. We want to challenge them, sure, but we don't want to frustrate or hint that our child's success as a person is wrapped up in performance. The temptation to equate performance with value can creep in, and it is more damaging than a thousand missed math problems or imperfect articulation.
There are the high achievers in every specific disability. Most of the famous folks with disabilities fall into that category—that's how they got famous! To compare and suggest that every child can achieve remarkability is no more realistic than to suggest that every child can be a da Vinci or Edison. Aim for the streetlight . . . hit the curb—I know. Aim for the stars; hit the moon.
Aim high to be certain, but a bit higher to the heavens. Ask the Lord to direct you as you guide your child to be all that he can be, for Him. God has equipped you to parent your individual child. He has equipped each child with all that child needs to fulfill His purposes. Trust that God will be faithful as you raise your child for His glory.
Where does this leave my child with the size 6 and size 7 shoes? Who is he to become? Whose shoes will he fill? Flip flops, hiking boots, sneakers alike, he has only to fill his own. That's our aim. I'm helping my son aim. Sometimes I am helping a child, and sometimes I'm helping the man. Part of raising children is aiming high, and part is meeting the child where he lands.
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Marla is delighted to have accomplished her childhood dream of being a wife and mommy. Originally from the Shenandoah Valley, Marla is still a small-town girl at heart and cherishes her family and faith. Presently in their fourteenth year of homeschooling, she is the mother of seven children, four still at home. Pleasures like a good cup of coffee or the first hydrangea blossom are simple things she appreciates. Admittedly a bit of a homebody, Marla delights in her family (most days!).
Copyright 2009. Originally appeared in The Old Schoolhouse Magazine, Summer 2009.