Special Needs Children

Darrell Roquemore Unless the Lord Magazine October 2000, p. 23-5

Reprinted with the permission of the editor, David Crank © 2000 Unless the Lord Magazine

A couple gets married, fully expecting life to get better and better. Eventually, children begin arriving and perhaps, somewhere along the way, the unthinkable happens. A child is born that is not "normal". Words like "poor thing" and "tragic" begin to slip from the lips of friends, and even relatives. The parents are numb, perhaps grief-stricken, their dreams shattered. The question "How could this happen to us?" keeps running through their minds, again and again and again.

This story is repeated hundreds of times every day across our country, babies arriving with something "not quite right", or in the proper clinical terminology, a "birth defect". Sometimes its physical, sometimes mental, more often its both. They are even non-discriminatory, occurring to mothers regardless of age, race, income, or residence. Nationally, defects occur at the rate of 2 to 3 per 100 births and have names that are veritable tongue twisters, like Cystic fibrosis, Spina bifada, Hydrocephaly, Ancephaly, Brachmann-de Lange syndrome, Down syndrome, and many more.

Whatever it is, it will require more of the parents than they ever expected, or, in some cases, more than they want to. Perhaps that's why special children are considered a burden by many. Or worse, aborted when a test comes back with negative results. Unfortunately, this practice has accelerated dramatically since Roe vs. Wade came upon our land. And the statistics are horrible: since 1990, nearly 90% of mothers who submitted to amniocentesis and found they were carrying a child with Down syndrome elected to abort it.

But is a child with DS really a tragedy? A curse from God? Perhaps our story will help you see that He is truly sovereign and what appears to be a burden is actually a blessing of the highest kind.

Martha Cathleen arrived on February 6, 1997 without any human foreknowledge of things "not quite right". There was no amniocentesis (why submit to such a risky procedure if you're going to accept God's gift anyway?) to confirm she had DS, nor did the ultrasounds reveal the multiple heart defects which would require surgery before she was 4 months old. There is just one word to describe my reaction to her arrival: numb. My wife, Tina, on the other hand, was all smiles (see sidebar for the reason why). That was the beginning of the ministry of our little angel.

Martha and Mom came home the following day and shortly thereafter began the process of what every parent must do with a special child — learning everything possible about their baby's condition. For Tina and I, the Lord's mercies were apparent right away: never in history has so much information been available about Down syndrome. I "mined" the Internet when I returned to work and came home with a wealth of nuggets. Here are some of the nuggets.

• DS is not a disease — it is a genetic disorder with manifestations in various physical and mental abnormalities. Each cell in Martha's body has 47 chromosomes instead of the normal 46, the extra one being number 21, also known as Trisomy. It is important to understand that, while geneticists understand the process whereby DS is produced, they cannot identify the actual cause. Interestingly, however, is the fact that this process begins when the fertilized egg starts cell division — the moment of conception — with either the mother or father contributing the extra chromosome.
• DS is not the only genetic disorder that can occur with a baby. It is, however, one of the few survivable ones.
• DS is not the realm of "older" mothers. 80% of DS babies are born to mothers under 35 years of age.
• There is no cure for DS, but the symptoms are treatable. There has been a tremendous amount of medical research in the past 5 to 10 years. Consequently, treatments have been developed that offset many of the effects of that extra chromosome. Not all, but some. Enough to where Tina and I believe that Martha has an excellent chance at having a fairly normal life. Again, we are very thankful to the Lord that He chose us at this particular place in history to bless us with Martha.
• In the past DS individuals were stereotyped by mental retardation, shuffling walk, protruding tongue. Today, thanks to the medical research and many therapy-type services available, that image need not apply to any baby born with DS. Unfortunately, there still exists a tremendous gap between what people think about DS and the current reality, including physicians.
• Don't accept anyone telling you that there is no hope!

Of course, having information doesn't do much good until you understand how it applies to your specific situation. And, oftentimes, discernment must be exercised to determine what is right for your special child. You cannot take everything you find at face value. Take what you need from the "experts" and throw away the rest. Ask yourself: "Is this beneficial for my child?" "What are its effects, good and bad?". Ask others who have children with similar disabilities what they have done. Join a support group. Be pro-active.

Another process parents must go through is to accept their baby's condition. This is absolutely vital, otherwise the baby will know that he/she is unloved and unwanted. For the Christian, acceptance should occur within the blink of an eye once given the facts. After all, is not each child a blessing? A gift from God? Admittedly, this is an ideal and I confess that it took me longer than a moment to accept Martha's DS. Fortunately, I had wise counsel from my pastor when he put it in this perspective: "Aren't you fortunate to have been chosen by Him to receive such a special blessing?".

The parents of a special child must also understand the extraordinary purpose for having their child. When asked by His disciples about who sinned causing a man's blindness, Jesus told them his condition was for God's glory (see John 9).

Martha has touched so many lives that Tina and I have lost count. She has softened hardened hearts, caused smiles where there were frowns, and brought joy to those who have been joyless. The episodes I remember the best are those that occurred with strangers. There have been countless store check-out lines where Martha has reached out to the person behind us with her precious smile and melted that heart. And many times we have been able to share her story (once again, see the sidebar).

One of the most beautiful things about Martha is her unconditional love (the Bible calls it agape). From what we have learned from others with DS children, we know it will never change and will remain throughout her life. It is her God-given nature. Isn't it a shame (and I don't use the word lightly) that, deep down inside of us, we all crave that agape love and yet these children are aborted because they will be a burden? God, have mercy on us!

In a very real sense, Martha has "healed" me. Healed me of the notion that the packaging must be perfect by showing me my own imperfections instead. Healed me of tomorrow's expectations. In many ways, each day is a new day of discovery for Martha — not for her, but for me, her father. Without expectations to cloud my vision, I get to treasure her every accomplishment, no matter how trivial it may seem. She has also healed me of insensitivity to others.

There are so many life lessons as well. Sacrifice has taken on new meaning. Every parent knows that they will sacrifice some things the moment they bring a child into the world. You certainly sacrifice the ability to sleep late on Saturday mornings! But what about the fact that one special child can literally take over your entire schedule? Or your emotional well-being? Especially Mom's? Looking back over the past 3 years, Tina and I discovered that Martha did just that. Open-heart surgery when she was 3½ months old followed by the inevitable check-ups. Four different therapy programs each week (we've almost worn out the family car). Are there any regrets over that? None. Well, maybe one. Tina and I both regret that our attention to Martha's older brother (Stephen, now 8½) slipped at times.

And what about the lesson of releasing your child to the Lord? And recognizing that your child is not yours after all and you're just stewards for a while? Nothing taught us that lesson more than one particular episode, now etched permanently in our minds. It occurred the morning we had to hand Martha over to members of her surgery team at Texas Children's Hospital. Tina was carrying Martha who was sleeping peacefully, a slight smile on her face. Almost angelic looking. Mom didn't want to let her go — it was all she could do to lift her arms for the hand-over. My chest felt like it was being squeezed by a vise — I only managed to keep my composure through clenched teeth. And once our baby had disappeared through the OR double doors, we couldn't walk. Couldn't talk. All we could do was lean against the nearest wall, holding each other, and praying. Praying that all would go well, that the doctor wouldn't make a mistake. Pleading with the Lord to allow Martha to live. Praying that He would help us trust Him to know what's best.

It sounds so trite and simple to say that He answered our prayers. But He did, plus those of other members of the body — the devoted friends in the waiting room with us, an entire church, and even strangers scattered across the countryside that we only heard about after the fact. The Lord is merciful and loving. How does anyone cope without Him?

So, where are we today? After 3½ years with a Down syndrome child, I can safely say it does not an expert make. However, I can make some observations and pray that it will help you or maybe someone you know. As you can see, most are in line with the principles used in training a "normal" child. You just make whatever adjustments you need to fine tune them for your special child.

• A special child needs loving and devoted parents, no matter how severe the defects are. Your love for that child will reach his/her spirit.
• It's preferable that Mom stay at home. Stress management for the family is far easier this way.
• Set up a daily routine; get a big calendar to schedule events as far in advance as you need to. With Martha's various therapy programs, we were planning 3 months ahead.
• Do not underdiscipline your special child just because they're handicapped. They have a need for firm boundaries just like any other child, sometimes more so.
• Teach other siblings how to care for their special brother or sister — it will pay a handsome dividend in their character development. We've been amazed at how protective and proud Stephen is of his little sister.
• Consider home schooling your special child. I realize there are some situations where this is not practical — perhaps special therapies are needed from the school system. But a loving family is the best therapy there is.

In closing, Tina and I have daily come to appreciate the Life Verse we chose for Martha: Psalm 139:14 "I will praise thee; for I am fearfully and wonderfully made."