When Our Idea of "Best" Isn't God's Plan
- Monday, April 12, 2004
...Our Experience with Raising a Special Needs Child
When you tried without success to learn to tie your shoes, your mother might have quoted the old adage, "Can't never tried." When you did your best but just couldn't master writing a cursive "Q", you might have been encouraged to practice more. Eventually you learned to tie your shoes and can even make a cursive "Q" if the need arises. But if you were born with a learning or physical disability, these tasks create special circumstances that require understanding, patience, empathy and creativity. You are a special needs child.
I never used to like that term. I mean really—everyone has "special needs" in some form or another. I learn best through hearing and doing, my son through seeing things first-hand. My husband can remember anything read to him, but I have to read it for myself if I want to retain the information. Isn't that a "special need"? During my years as a tutor for children with learning disabilities like dyslexia, dyspraxia, ADD, ADHD, etc., I accepted the fact that learning disabilities are real—they are as tangible as a physical handicap and can be just as debilitating.
Always one to search out an answer to any problem, I came up with creative ways to teach reading to dyslexics, handwriting skills to dysgraphics, and multiplication facts to ADD kids while they were bounding on a mini-trampoline. As the teacher, we could and would overcome any obstacle! However inspiring, my enthusiasm and optimism kept the emotional side of these issues at arms length. The ways things are is just the way things are. Why cry over spilled milk?
It wasn't until our Luke was diagnosed with severe apraxia and sensory integration dysfunction that I learned just how devastating a disability can be to a parent. No matter what the training, vocation or preparation, there is nothing like realizing your child will never be "normal" Luke is facing at least one surgery to correct weak eye muscles associated with apraxia. He has problems with his feet that require braces in his shoes. He might need hip surgery to correct dysplasia. He has a genetic heart condition that might need corrective surgery. Our three older children are "perfect"—no physical disabilities whatsoever. I felt like I had been hit by a speeding car that came out of no where.
When I finally accepted the fact that Luke isn't "normal" like our other children, I cried for 3 weeks. I mourned all the things he could not, and perhaps would not, ever be able to do. He is our 3rd boy—he was going to be the fourth part in Daddy's own little men's quartet! We are a family of singers and he isn't going to be able to speak as others do! How will he earn a living? Will there ever be that special someone to love and accept him as he is? "Lord, this is a mistake—I'm sorry but You just have to 'fix' it." That was my hearts cry.
Luke is our youngest and I often compare having a special needs child to being a first-time parent all over again. Only this time I realize how unprepared I am—how inadequate I am. I am wise enough to know that I alone am not enough for him to succeed in life. I suspect it is like this with most parents. We want what IS best for our children in combination with what we THINK is best for them. When we realize that our idea of "best" isn't ever going to be accomplished we fall apart. Our visions are crushed, our Utopia collapses. Dreams of little Johnny being another National Spelling Bee champion or winning the Nobel Prize are gone. He will never win an Olympic Gold Medal or earn a National Merit Scholarship. He won't grow up to build houses or mend fence or follow Grandpa and Daddy into the Army, Navy, or Marines. We feel as though a life has ended—the life of who we wanted our child to be doesn't exist anymore.
In this respect, having a child with special needs isn't that much different than having a "normal" child. We just have to face the music sooner that they are their own persons—created as they are with unique giftings and interests only their own. We have to come to terms with the Lord's plan for their lives and trade that in for our own desires for their future. Without Luke I think I would have faced this end of dreams as most people do when our children don't go down the path we plan for them: when they leave our home for their own, or take a road we would not wish them to travel.
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