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Tell Me Your Story—Parenting a Special Needs Child

DSC_3703_2Dear Readers,

I want you to learn more about our columnist, Marianne Miles who writes Miles to Go, encouraging parents who struggle to raise special needs children. Marianne has such a heart of compassion for these parents because she’s been there.

If you have a friend or acquaintance who faces these kinds of challenges, I recommend you use the “Email this post” button to forward her story.

Ruth Wood is the columnist for Tell Me Your Story. Do you have a dramatic or unique story that would encourage others in their walk with the Lord? Send an email to Ruth with subject line “query” and include a paragraph summarizing your story to ruthywood@gmail.com.

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Parenting a Special Needs Child

Marianne, I’ve so appreciated your contribution to Comfort Café’s our Miles to Go columnist sharing your heart with parents of special needs children. I want our readers to know more about your first-hand experience raising a special needs child. When did it first began to dawn on you that your youngest, Jon, faced some unique challenges?

I saved many incidents in my heart about Jon from his earliest days which, in looking back, I realized were indicators that something was not quite right—not wanting to be snuggled, extra sensitive, withdrawing, other small clues. When Jon began having accidents in his pants, age two, his doctor assured us this was normal, maybe poor parenting was implied, but nothing to warrant further assessment.

So, it wasn’t until about ten years later, when our family had been through the VSD (valley of the shadow of death) with Jon’s disabilities and resulting behavior problems that we finally demanded that he be thoroughly evaluated. That’s when the doctor found a deformed kidney and a dysfunctional bladder.

How did you deal with his inability to toilet train himself?

Actually, Jon did toilet train himself—very early. I remember this well because around eighteen months, he was taking off his diaper and trying to use the regular toilet (not a potty chair) but couldn’t climb up on it. From the time we placed the child’s potty on the floor in the bathroom he used it regularly; it was if he said, “I’m through with diapers.” We later realized the sign that there was a biological problem was that he began urinating in his pants regularly just after he turned two after being dry for six to eight months. From two to ten, he wet his pants almost daily and then sporadically for a few more years.

We tried so many ways to help him gain control of his bladder that I can’t remember them all. At his doctor’s advice we tried many incentives, withholding pleasures and ‘gizmos’ like a $50 alarm wrist watch, which told him when he was to go to the bathroom. Nothing worked, and by the way, this was before paper diaper underwear for kids.

What kinds of problems did his incontinence cause in school?

Through preschool, people were gracious to Jon. Family members, teachers and even other students could be gracious when there was an “accident.” However, in kindergarten his teacher told me she thought a little reality therapy would help and she tried to shame him in front of the other classmates, telling him he was “dirty” and spreading germs by wetting his pants. I think I remember her making him disinfect a chair he was sitting in. Her “therapy” was not helpful.

The other students picked up her disdain for Jon. Soon the “troublemakers” of the school were the only ones who would play with him. Jon tried some disturbing behaviors and words, patterning himself after these playmates. I tried to talk to his teacher (public school) but she said I was being ‘moralistic’ in my expectations for his behavior. That’s when I began to home school Jon and his younger sister.

How did his lack of toilet training affect your relationship with family and friends?

Today, I still cannot recount these encounters without tears. It was a very dark, lonely time. Everyone told my husband and me that we were responsible for Jon wetting his pants. Our family, friends, teachers, professionals would tell us we were too strict, too lenient, didn’t give him enough attention, gave him too much, too rigid, and too inconsistent. Gratefully, we were hearing opposites from people, so we knew to take the advice lightly.

Some friends didn’t want to have Jon over and told us so. One set of grandparents refused to take him on a trip they promised until he could “get himself under control.”

When did you find out what was really going on medically with Jon?

When Jon was ten, we were referred to an urologist (after we demanded such of our physician.) Seeing the results of Jon’s testing, he explained to us that Jon would eventually outgrow his inability. The doctor sympathized with the pain and ostracizing we and Jon had suffered. He said, “If we lived in the jungle without clothes, no one would have even noticed Jon’s plight.”

I don’t know to this day if Jon’s odd behavioral patterns result from the psychological trauma of his experiences of not being acceptable, ADD, or even a mild autism. I suspect all three.

Before you knew that Jon was dealing with a medical problem, you must have felt a deep sense of failure as a parent. How were you able to deal with this?

The Lord.

There were also a few encouragements from people on the way. For example, the family therapist we saw when Jon was about eight said, “I can’t believe that you have done so many things right as Jon’s parents.” I still see these words in my mind like a movie theater’s name in lights. I know God sent this therapist to bolster us as we flagged in our efforts.

How did your husband cope with these challenges?

His self-view as a man, father, person was really challenged by Jon. There was a time I stepped up to the plate to be the only hitter for Jon, except for my sweet Jesus. Alone in the dark, I knew he was always with me. In time, my husband returned (he never physically left) to the battle, and we have continued on to be Jon’s best advocates to this day. There were also many times my husband had to carry me, especially in these last few years. We are stronger, more honest people because of it.

Your son’s special needs were extremely challenging. Did you ever find yourself questioning God, asking why?

I actually think of myself as a pansy when I talk to other moms of special needs kids. There are some really heroic parents out there living amazing lives with their appointed children. Recently, I attended a city soccer game for adults. A mother sat beside me on the sidelines, rooting for her twenty-year-old son. He took a break and ran to her, the keeper of his water bottle. They communicated excitedly, in sign language. He’s deaf from birth I found as we talked later. She recounted to me how the family’s structure totally changed when he was born. How the family rose to the challenge and has successfully seen this young man flourish. I have to admit, I was a little jealous.

I also had a close friend whose son was born with CP and she’s a widow, so I never felt I had the “worst case scenario.”

Despite the heartbreak of watching your son suffer so much, you chose to trust God. How did your pain challenge you to grow in your relationship with the Lord?

I am an arrogant and strong woman who was born into a family full of pride and lust. Having Jon for a son was a first step in breaking my spirit for self glory. My greatest desire was to have the perfect family, to be the perfect, godly parent. When I was three, my own parents divorced after my father confessed to my mother having multiple affairs. His admission was the ammo she needed to serve him a divorce—something society did not approve at the time.

I hated the divorce, but I responded by being a “good” girl. I went to a Christian college. As a young mother, I wore denim skirts and plaid blouses (the uniform of Christian culture at the time) and read my devotions daily. I was an entity unto myself. I didn’t realize it, but I WAS god. My family was my church. God loved me too much to let me stay “on the throne.”

Tell us a little more about your journey.

I’m not saying that God created Jon with a disability for my sake—not alone, anyway. I do think God has made Jon special, equipped him for special service for a special purpose, regardless of my need of reform and growth. Understand, I am plenty sinful and in need of forgiveness and repentance. But the experiences surrounding our family’s youth were where I more fully realized that. And the dark moments of raising my kids were surpassed by dizzying days of joy and light in my Lord’s presence both with and because of Jon. He is a delight to me beyond measure.

Would you tell us how Jon’s special needs affected him emotionally even into adulthood?

This is the hardest question to answer because it’s about right now!

I haven’t mentioned it before but should explain that Jon is very good looking and exceptionally intelligent. He’s also extremely sensitive and has a strong sense of what is right and wrong. What he doesn’t have is reserve, caution, self examination or self control. He can be charming in social settings or a blustering bore. He has no internal compass to alert him of either, but if anyone mentions a failing, he becomes defensive and deeply hurt. There is rarely measure in his response. He is likely to think about what has been said and return to apologize, but often too late for there not to be residual hurts. And possibly the worst is that he is loyal to a fault, so people use him easily, deceive him, and then dispose of him. Which of these failings comes as a result of his life of being “unable?” I don’t know. Does it matter?

Where have you found your place of peace in trusting God as your adult son faces his future?

My trust that God is still in control of all things in Jon’s life is solely that—faith and trust. I have a few Ebenezers, memorials of what God has done, to refer back for inspiration and confidence.

One of the most dramatic happened when Jon was seventeen. He had lived the previous four years in turmoil, often rebellious, confused, and hurt deeply by interactions with the world. But we prevailed as parents and urged Jon on. On this particular day, he was graduating early from an alternative high school, joining the marines, and appearing before a board of review to sign off on his Eagle Scout project.

What happened then?

I remember waking to the day with joy, but it soon changed to horror as I heard on the radio that a local high school student was on a shooting rampage in the school cafeteria after killing both of his parents. I cried all day long. I cried for this son of some dead parents, for the boy and for my son—the one that God saved out.

I never worried about Jon’s safety in the Marines. When tempted, I would always remind myself how God had chosen Jon out to be honored and celebrated that day when he could have been the desperate, angry son shooting his way to fame. I know that Jon is in the palm of God’s hand.

It takes a lot of courage, wisdom and perseverance to raise a special needs child. These parents deserve our respect and compassion. What final message of encouragement and hope would you like to share with them?

Look. Life is screwed up. It’s not supposed to be this way. I think it is harmful for “church-people” to try to present life as something more. Something easy or attainable, “if you do it right”, whatever that is. The raw truth is a Christian’s only hope is Jesus Christ. His love, mercy, faithfulness, provision and most of all, his righteousness on our shoulders, covering our “inabilities.” None of us is able. None of us is God. If our children remind us of that very real truth, well then, all the better.