Wow, it's so nice to know there are so many people around so we can all support each other. I totally want to check out that blog that Michelle just mentioned!
My son is almost 14, and is special needs. Looks like most of you have a diagnosis, count your blessings, we don't have a diagnosis, and it's not for a lack of trying, either. I could give you a tour blindflolded of Primary Children's Medical Center and Shriner's Hospital in Salt Lake City.
He's a sweetheart, and we're incredibly blessed how loved he is, and that the kids are soooo good to him. He's develpmentally delayed (don't you love that generic, catch all phrase that basically means they have no idea what's wrong). He's considered pretty high functioning, and does pretty well, if you were to compare him to a regular child his age, there's a definite difference and he's definitely behind, it's more like he's 9 or 10 yrs old in a lot of ways.
We seem to struggle with basic needs: eating, breathing, sleeping. We've had numerous sleep studies, and we're improving the sleep stuff, but it's still not great.
He's had breathing problems since he was a baby, and we never leave home without a nebulizer or inhaler. We're down to waking up in the middle of the night (when he has a coughing fit and can't breathe) and giving him breathing treatments to about 2 to 3 times a month, which is really no big deal. But we treat ongoing breathing problems daily to try to keep it that way. Allergy season makes it hard for him.
He has major dental abnormalties and it takes a minimum of 40 minutes for him to chew each meal (and that's if he's being fast, it's usually an hour) and that's only for the main course, he pretty much skips side dishes or else it would take him 1.5 hours to eat. We've been stuffing some garden veggies in and he's been eating those.
He also has major feet problems and has had 2 surgeries on both of his feet in the last year and will be having more surgery in November.
He's an adorable, happy (most of the time) boy that we feel incredibly blessed to have him a part of our family. I'm blown away at what an awesome experience he's been having in Jr. High (I had been dreading it for years and had been very skerred for the future) the kids have been wonderful to him, which I had never expected or anticipated. He had to do all of elementary at a non-neighborhood school for K thru 6 (where they had a special ed program since our neighborhood school did not), so when we were able to ::finally:: go to the nieghborhood jr. high, I was a little worried. Thank heavens he knows lots of kids from church and made plenty of new friends and the special ed program is amazing here. So blessed.
Things could be so much harder and worse. We're very thankful he does as well as he does and I feel like we are enjoying him now, more than we have his whole life. A lot of things have improved with age. We definitely still have our trials, but it's all worth it.
