Quote From: luvmygirl Hi I have a beautiful 9 yr. old girl with special needs. It has been a very difficult journey emotionally, physically and spiritually. We thought when we brought her home from the hospital at birth that we had a very healthy baby girl. Looking back nothing was quite right. She was a little too quiet. She was my first; how was I too know. At 5 mos. she started "acting wierd" we later found out it was siezures. It seemed for years afterward that every specialist and therapist found something wrong with her. Not to mention she was chronically ill for 6 years. Her siezure threshold is very low so anytime she starts feeling ill it would bring on countless siezures. Thankfully her immune system is stronger now so illnesses are now rare. But she is on the ketogenic diet to control siezures we cannot see. Which seems to be helping. Now that beautiful girl of ours is who she is. I finally stopped asking God why? But it can still cause great bouts of depression. Our reality is that she will live with us our entire lives. She is unable to speak, to dress herself,drink through a straw,(which is minor),and is not potty trained and is not showing signs of any understanding of that. But
she is soooo cute and cuddly and loving. She is developmentally at a preschool age. Her cognitive levels are much higher. So what we are blessed with is not the worst case scenario. She can at least play and laugh and watch her favorite shows. She is starting to scibble with crayons. Her little progreeses in life are
HUGE to us. I have learned so much through raising this special girl so my heart goes out to anyone with a child with challenges. I wish the best of luck to everyone.
Sorry, I missed your name but your post really hit home. My son is 9 years old and we thought we brought home the "perfect" baby. He was born normal vaginal term delivery, no complications, went home 24 hours later. He was quiet, only cried when he was hungry and slept through the night at two months, just wonderful. He too was our first so we just thought we were blessed. When he was about 6-7 months old we noticed that he rocked a lot and wasn't crawling or sitting or any so called "normal" behavior. The dr. said we were overreactive and all babie develop at different rates. Finally at 15 months and no progress we saw a neurologist who told us our son had CP and absent seizures. He was on tegratol for a while, had strabismus surgery for a wandering eye, had AFO's made for his legs, wore a splint on his left hand, has PT, OT and speech weekly. He was alos diagnosed as severly autistic at 3 but the dr.'s don't thing there is a link between the two, meaning they think he would be autistic regardless of the CP. Anyway, we weaned him off the tegratol when he was about 6 and he has not had another seizure since. Also, he used to wear glasses for his wandering, crossed eyes but he no longer needs those as he has developed good muscle tone, also he no longer wears AFO's but instead the smaller SMO's and he is very mobile (he walks with a limp), he doesn't wear the thumb splint either. He sleeps through the night now, makes vocalizations, makes great eye contact, has increased his concentration skills, is very affectionate and socializes very well, is learning to ride a bike and is being potty trained (slow but progressing). I know that probably he will live with us for the rest of his life but he has made such significant improvements. They may seem small for others but they are huge milestones for us that know him. I have learned more from him then he will ever learn from me and I know God gave me Josh for a reason. Since having him, I have learned so much about autism and special ed. I have been able to help others in my community, I started and run the special needs ministry at our church and I am also pursuing a masters degree in youth development in the hopes of establishing youth programs for autistic youth and their siblings. If it weren't for Josh, none of this would be happening. Also I run a home based nutritional supplement business from my home. (in a previous post, I talk about the benefits my family has had from nutritional therapy, I have other special need kids beside Josh). Your post just hit home for me and I wanted to let you know that you are not alone and if you ever want to talk, you can e-mail me at bersmr@charter.net.
