Parenting a Child with Special Needs
This seems somewhat unfinished to me. Maybe it's because I wrote I wrote it when Amanda was only 6 years old...
My life is dramatically different than I ever imagined it would be. I suppose that’s true for a great many people. Only people with clear vision and great drive end up pursuing their dreams.
I’m not sure I ever had a dream. Or if I did I was only aware of it that way you are when you are first awake and your dreams are half-remembered. As soon as you try to articulate them they slip away.
When I was younger I wanted to be many things. Some of them realistic, some not. I wanted to be a writer, a poet, an actor, a lawyer, a mother… I left the idea of law school behind when I foolishly entered an MBA program in my early twenties. I was probably the least mathematically inclined student to ever be enrolled in business school.
Still, I intrepidly entered the business world armed with the softest business discipline I could find – human resources. Fortunately for me, I landed in a position that focused on developing employee training programs. A good fit for some one who enjoyed research, writing and lots of attention. I spent several years as a corporate trainer, occasionally flying around the country to conduct multi-day seminars. I liked it. I was good at it. I had a job with flexibility, good pay - where people often clapped for me at the end of the day.
In the summer of 1998 I was six months pregnant and planning on a maternity leave of 9 months. Then the unimaginable happened. I went to a routine prenatal exam and my first ultrasound. Everything was fine. However, when I got home there was a message on my answering machine from the doctor I had just left with six scary words, “we need to see you again.”
As it turned out, after reviewing my ultrasound the doctor spotted what appeared to be a cardiac abnormality. My husband had a business trip and flew off the morning of my level two ultrasound appointment. Neither of us expected them to find anything more serious than a heart murmur. Still, in the back of my mind I knew my mother had lost her first baby to a congenital heart defect.
The memory of that appointment still has a nightmarish quality to it. At first things seemed to be going well. The attendant asked if I had brought a videotape so I could see the baby at home. I hadn’t. I figured that was good news. No one would want to send me home with a video of a horribly disfigured baby.
The doctor looked at the ultrasound and mumbled to himself a little. Then he left the room. I tried to determine what I was looking at on the screen. It was a fuzzy black and white picture, worse than the picture on the TV I grew up with in the 70s. I could roughly make out the ribs and things moving. The doctor came back with another doctor. Then they both left. Now I was getting scared. They came back with a third doctor. "What could be so awful that my unborn baby needs three doctors?" I worried to myself.
All three doctors left and the first one came back alone. He sat down on the edge of the gurney and reached for my hand. "Oh shit," I thought, "this is going to be really bad". He calmly explained that it looked like the blood was flowing backwards through part of my baby’s heart. After consulting with his colleagues they felt our child had only three chambers to her heart instead of the usual four. This meant all sorts of bad things that I couldn’t process. All that stuck in my head was the phrase “cardiac defects are rarely in isolation” meaning that my baby could have a bigger problem than missing part of her heart.
They wheeled me down the corridor and announced that they needed to do an amniocentesis. I didn’t think of the potential complications, oddly all I thought of was that I was in a HMO and I hadn’t gotten authorization for an amnio. I grabbed the side of the door frame and made them call my insurance company for an approval before I let them take me in. I remember jumping off the gurney in maternity pants and a sports bra, threatening to use the phone in the lobby unless some one called the insurance company RIGHT AWAY. I guess I thought it would be an expensive procedure. More likely, it was my subconscious way of trying to avoid it all together.
As it turned out the amniocentesis was normal. Only later did I learn that amnios test for only a fraction of the existing genetic disorders. I spent the remainder of my pregnancy worried about my baby’s heart, but feeling confident that over all she would be fine. I stopped working because the doctors were concerned I would go into labor out of state and wouldn’t have the necessary medical facilities for the baby close by.
There’s no need to go into the labor or delivery. Just trust me when I say they weren’t normal. With a life flight crew standing by to wing my newborn away the minute she showed complications the delivery room was more like a stage – with a dozen doctors and nurses standing by.
Amazingly Amanda didn’t need immediate heart surgery. As it turned out although her heart isn’t structured just like ours (parts that should go around apparently go through it instead) it works. Feeling grateful that we had dodged not a bullet but a cannonball we were took her home with us after only five days in the Neonatal Intensive Care Unit.
As first time parents, a thousand miles from our families, we had no idea there was anything still “wrong” with her until she was six months old. While she was rolling from side to side she had difficulty raising her head from the floor while lying on her tummy and she couldn’t sit unsupported. If we sat her up she just sort of melted into a prone position. We bolstered her in her car seat and her high chair with old towels and cloth diapers.
After complaining to the pediatrician that Amanda’s head seemed unusually flat on one side she sent us to a pediatric neurosurgeon. To say the man was an unfeeling jerk would be a compliment. To this day he was the most insensitive doctor or specialist we’ve seen. He looked at her, announced that she had Down’s syndrome and would “always be funny looking” so he didn’t feel it was appropriate to prescribe a corrective helmet for her. Our beautiful baby – funny looking? I don’t think the man will ever know how close he came to being decked by my 6’4” husband that day. The only positive thing to come out of that appointment was that I was able to persuade our regular pediatrician that Amanda needed physical therapy for tortocullis.
Little did I realize the treadmill I stepped on that day! We’ve spent the last 13 years in and out of various therapies, most with little or no impact. She’s had physical therapy for gross motor skills like sitting and walking, occupational therapy for fine motor skills, speech therapy, feeding therapy, aqua therapy, music therapy and hippotherapy (therapy on horseback). I freely admit that I tried some of these simply because I was frustrated with conventional therapy and thought that if the poor child had to spend seven hours a week with specialists at least some of that time should be fun.
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| Hippotherapy |
Fun is hard to come by for some of us. Many of our kids can’t run and play the way other children do. Others don’t even understand the concept of play as we typically mean it. Holidays can bring as much pain as they do joy. Surrounded by the typical members of your family and their typical offspring, the stress can be almost unbearable. Physically impaired children may not be able to open their gifts without assistance. Cognitively challenged children may find the wrapping paper the most interesting part of any gift for years. Emotionally challenged children may just find the difference of a holiday too much to bear and close in on themselves.
Relatives don’t understand why tactile defensive little Suzie doesn’t love her fluffy new teddy bear or why Bobby has gone off in the corner to play Game Boy by himself. The children are stressed, the relatives are confused and the parents are in the middle trying to soothe everybody’s feelings.
It’s hard to explain to some one who has never raised a child with special needs what this life is like. While all children with special needs are different, as families we share many of the same experiences. All of us have known the disappointment of shattered dreams, learning to live outside of the norm and still try to function like a normal family. The cycle of doctors, therapists and specialists is exhausting for everyone involved. There is a financial burden and an emotional burden. There are days when you see a spark in your child that lets you hope they will some day be able to blend into the mainstream despite this difficult beginning. There are other days when you wonder if anything you’ve said or done has made a difference.
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| Aqua Therapy |
You constantly have to recreate hope. Some of us do it by switching doctors or therapists or types of therapy. Some of us try alternative medicines, special diets or novel therapies. You constantly feel like you have to do more, do better and then maybe your child will be all right.
Sometimes you just quit. You take a week, a month or even a year off. You try to live like other people who don’t have a therapy appointment every day after school and two on Saturdays. Then something happens and you wake up, re-shoulder your burden and move on.
I’ve used the word burden several times and I don’t regret it. But children with special needs are often the source of unexpected joy as well. Who knows better the miracle of a first step than the parents who have waited five years for it? When your autistic child suddenly makes eye contact and you KNOW he loves you the world stops for a few seconds and tears run down your cheeks. By having so many of the normal joys of raising a child taken away from us we learn to appreciate moments that other parents may overlook. We've learned to dream differently.
