Raising a Special Needs Child

I am the mother of a special needs child. I have worked with special needs children in school for the last 19 years and been around special needs children since I was a child. My brother has mild cerebral palsey and I remember going to his therapy sessions. I think this has helped me deal with my own son, even though he has a different disability.

I didn't know if I would be a good mom. Jacob was born in 1996, four years after my marriage to David. We planned Jacob and he was a gorgeous red headed little thing. I felt such an awesome responsibility when he was born and also a tremendous amount of love. When Jacob was 3 years old we decided to start trying for a second child and were blessed when I became pregnant within a few months.

Elijah's entrance into the world was bit more traumatic. He was born eight weeks early and came out a fighter. He would not even let the nurse intubate him. He was born in a small hospital due to the speed of his birth and transferred to a larger hospital with a NICU in Dallas. He spent 12 days on a ventilator and five weeks in the hospital. The day he was being released he failed his hearing screening and so it began.

Elijah had other challenges. He came home on oxygen for the first six months of his life. Our lives revolved around trips to the pulmanologist, developmental pediatrician, audiologists and pediatrician. Poor Jacob had to grow up so fast and be this big brother!

We did get into a routine and this became our life. I look back now and wonder HOW I did it. Packing Elijah off to the sitter's everyday with his little oxygen pack and pulse oximeter. He later got hearing aids around the age of 15 months and then his cochlear implant turn on at 18 months of age. We spent the next four years working on his language skills with private therapy. He started school at the age of three and language development is something was have always worked on.

He was always a rather "different" child and very rigid in his routines with lots of impulsivity issues. We discussed ADHD with our pediatrician when he was 5 years old and he started meds for that then. He then got the diagnosis of tourette syndrome at the age of eight, after a year of tics and not really knowing what was going on with him.

What is it like to be the parent of a special needs child? For each parent it is a little different, but I do think it comes down to acceptance. Even though I teach deaf children, it was hard to accept Elijah's deafness. I then had to accept the asthma and be ever viligant with his health. Now it is not too bad, but if he even coughs funny, and this goes for Jacob too, my ears perk up and I take an extra listen. Elijah's ADHD was not as hard to accept, so many kids have it and even his dad had it as a child. When I first suspected Tourette syndrome, after seeing an HBO special, I was in shock I think. I mean what are the odds of him having something that I had never really seen in person and at the time I thought was rather rare. I may have been in denial, or maybe just in shock, who knows. It has been a slow acceptance for me.

Understanding the behavior that goes with tourette syndrome is very difficult. I never really know which Elijah I will get from day to day or even from minute to minute. I think the hardest part is that I never really get to let my guard down. I can't just leave him with anyone due to his ever changing attitude. I hold my breath on days when I can sense he is "off" with his behavior and as I drop him off at school on those days I pray he has a good day. I wonder what others think of us when we are out in public and his behavior is all over the place. I am not talking about the tics, those are not a problem, but that behavior. I know it is a neurological condition that makes him act the way he does and I in turn parent in a way that is best for him, but others around don't know this. I am sure they think he is this little pain in the rear who should know better and why isn't that mom disciplining him. It doesn't bother me, but I hate it for him.

I am still learning so much about tourettes and all that goes with it. I have found some good resources and met some great people on this journey. Thankfully, Elijah's language skills and hearing loss are not a major issue so I can focus more on the issues at hand now.