I was asked a couple of weeks ago about my son. I apologize for taking so long to respond to comments/questions left for me. These past couple of weeks have been a whirlwind of activity!
With this new diagnosis and planned trip to Denver to visit with a new doctor, we’ve had to dig up all sorts of past records on ds and I suppose, that’s caused quite a bit of emotion to come back to the surface.
DS was diagnosed at the age of 14 with a form of autism. While we do have the label of “Asperger’s”, the doctor who diagnosed him had quite a bit of trouble trying to place him in the right category since nothing ever lines up as neatly as we’d like and ds was no exception.
Sometimes I wish I could go back to the time when ds was a baby, before the developmental delays were apparent, and just relive that time. By the time ds was 2, we were in speech therapy and at that time, those were the only delays we thought he had.
We moved when ds was nearly 3 and had to give up the wonderful therapy we’d received. Everything is handled differently here–through the school district–and it was another year before we had everything worked out for ds to continue therapy. By this point he was speaking but had developed a pretty severe stutter. From that point to now, there have been times where he was nearly unintelligible due to the stuttering.
There were signs along the way that ds wasn’t keeping up developmentally with his peers. He wasn’t potty trained until 4. Kindergarten was a nightmare some days. Even though he was nearly 6 when he entered kindergarten, transitions were heart-wrenching. There were many, MANY days where he had to literally pried off my body and/or pried out of the car. Even now, all these years later, it breaks my heart and brings tears to my eyes.
First grade brought more delays to mind with the complete lack of comprehension. Teacher’s notes were sent home asking us to work on comprehension with ds. He was falling further behind when compared to peers. He didn’t know how to make friends. He didn’t understand that these kids were making fun of him. He didn’t understand jokes.
As he’s matured, he has overcome some of these delays. Some of them have been so difficult to watch. His lack of understanding when people made fun of him were days of bliss compared to watching his heart break in understanding that his “friends” were making fun of him.
We had accepted the autism diagnosis and had learned to plan life around it. The delays that ds was overcoming made us hopeful that he’d be able to finish high school and go on to votech as well as finding a job that he liked.
A little over a year ago, all of my boys went to church camp. All three were looking forward to it and couldn’t wait to get there. When they got home, my 2nd oldest came to me to let me know that ds1 had had problems while at camp and those problems were scaring ds2. DS2 said that while running ds1 would have moments where he seemed to drag his leg behind him. At that point, we decided to watch him to see if it continued to happen. When it didn’t continue, we assumed it was just a fluke and thought nothing else of it.
Then ds started public high school. Our homeschooling experience had been a good fit for ds up to that point but by the time ds was to start 10th grade, he really wanted to try ps for a while. We agreed that it would likely be a good experience so he was enrolled for 10th grade.
Before the first semester was even finished, ds2 was again telling us that ds1 was having problems. We took him to the doctor and we were then referred to a pediatrician for further testing. The problem we had was that dh and I hadn’t actually seen these episodes and had to rely solely on the description given to us by ds2.
The pediatrician referred us to a neurologist which meant another couple-months’ wait. We still hadn’t seen what was going on with ds but had gotten him to admit to what was going on. He said at that point his arm and hand were tightening up whenever the bell would ring at school. That was February.
It’s now October and what was an intermittent problem for ds has now become a daily frustration. He reports that the spasms are happening at least once a day but oftentimes it’s several times in a day. His legs are also affected–greatly, it seems. He says that his legs don’t want to work when he gets up and that one leg is stiff and the other foot turns up and in when he tries to get up.
As he’s able, ds tells me more about what is going on with him. The other day he came home and said that there was a fire drill at the school and he couldn’t get up. His legs simply wouldn’t work. He says that he can’t make his legs work in enough time to answer the phone when it rings.
I can no longer expect him to be able to get up as soon as I call him. He says that if I ask him to come to see me or to do some chore, he is no longer able to make his legs work. Once he’s up, he says he’s okay and his legs work (though from this side of things, they’re working–but not well).
All of this coupled with our neurologist’s apparent inability to guide us in making the best decision for ds has me scared for what the future holds for ds–but also hopeful that this new doctor will have answers for us.