Written by Susan Loyd*
“Thoughts from a mom with 4 special needs kids”
Our fourth child was going to be normal. I just knew it after all our other three children were neurologically impaired and no way would God give us a fourth. Our fourth child was going to be able to say her name at three not at seven like the other three. She was not going to spend her developmental years in therapy. I was not dragging her from
specialist to specialist. They were not testing her for every disorder known to man. We were getting out of debt. Every spare cent we had was not going to be spent on some new therapy for our child because of course she was normal…
We were never again going to hear, “your child does not know the alphabet, your child has no letter recognition, your child can not count, your child can not hold a pencil, let alone write”, and we would never hear, “we have no hope your child will ever learn or participate in society in an appropriate and meaningful way”.
Because three’s a charm not four…
I was not going to be hit, kicked, screamed at or bitten every time I had to brush her teeth or wash her face. My fourth child was actually going to enjoy having her hair washed.
I was going back to school, get a job, and start making a difference in other children’s lives…
We had fought tooth and nail to rehabilitate our other children; they were doing well and did not require as much assistance. Our oldest son, who stroked as an infant, had his second major surgery and was doing well. Nine years of therapy had finally paid off, sure there were issues but compared to the past, a piece of cake, no problem. Our second child a daughter was doing very well. It was hard to believe that when she started therapy she had two sounds. Her motor skills were average, she has issues but again a piece of cake, eight years of therapy had made a huge difference. Our third child a son was again doing well. We could actually understand him when he spoke, we were not sure we ever would. Seven years of therapy and Fastforward had worked a miracle in his life…
The road to recovery had been hard, tiring, and quite difficult, but we survived. So life was going to be easy. Whatever parents of normal children worry about, that is what we were going to worry about. My daughter was going to sing the ABC song before eight years of age. We were not going to have sleepless nights worrying whether she would ever learn to read. Yes! Life would be sweet. We finally were going to say, we have a typical average child. We could put our experiences in the past and move on to other things.
That is how life was going to be…
However God had other plans and gave us a special, precious bundle of joy that just so happens to have “apraxia”.
(Emily) is the joy of our life a dancing angel dancing through our life. Her “apraxia” is global and affects every aspect of her life. No cure or cause is known. These children have a very low frustration level. Their behavior is often seen as inappropriate. She rarely tries to talk. Our fourth child was actually going to play with other children, not along
side with other children. We were not going to have to explain this confusing disorder and why our daughter doesn’t talk like children her age and why she behaves the way she does…
We are tired, but we will fight for her. When therapy seems useless and progress slow, we will keep trying. Giving up is not an option! Her siblings have been there, spending most of their life in therapy. They think it is very unusual if you have not been in therapy. This experience will make her a better person. She will learn not to take the simple things for granted like “tying her shoes”.
We will be better parents for having gone through this journey with her.
We will cheer when she says her first intelligible sentence…
We were never given an opportunity to say “No, we don’t want four children with disabilities, send us average children instead”.
If God came into my den right now and said, “I’ll replace those disabled children with normal average children and the past thirteen years will be a blur, you will have no recollection”
“want to trade?’
We would honestly say “No, Thank you the blessings you sent were perfect in every way, they were just what we wanted. Journeys like this are few and far in between. I have learned so much about life. I am not the same person I was thirteen years ago. I have chosen to pursue my Master’s degree in Special Education. Adversity builds character and I would say I am definitely a person of character, courage, and hope! “I’m drinking from my saucer because my cup is overfilled”.
~ Susan Loyd (Cherab Foundation member)