It's no secret I have a son with a developmental delay, at least that's what the experts tell me. Officially, Pervasive Developmental Disorder--Not Otherwise Specified, or PDD-NOS.
Right from the time he was born, he was labelled "sensitive," which I never quite understood, other than that he could be hard to settle, and he wasn't quite as responsive to being cuddled as I would expect him to be. I chalked up the not being very cuddly to the fact that he was born at a hot time of year, and it just wasn't comfortable! He could sleep through all kinds of noises, but if that same noise occurred while he was awake it was game over. At 18 months I answered the questionnaire at the health unit about his speech. An innocent enough question at the bottom asked if he could say a certain number of words. I interpreted that to mean clearly spoken words that adults other than myself would be able to understand. I ticked "no" even though he said things that I understood even if they weren't full or clear words. We were given an opportunity to have him seen by the staff speech-language pathologist. What an ordeal! I don't know if it was a sign of things to come, or if he just had a dislike for the woman, but she could not engage him at all! He would be in her office for five minutes, then toddle furiously for the door, which was closed. Even though he couldn't turn the knob, he sure as hell tried!
I began dreading taking him in, as I felt as if it were somehow my fault he couldn't/wouldn't comply. It was a relief to be able to tell her we had to take a break, as he was going to Newfoundland with his Dad for two weeks to meet his Nanny and Poppy. Almost right away when they returned, I noticed he was saying a lot more, and clearly enough too! This was enough to make the decision to not go back to the non-productive appointments at the health unit.
Looking back, (isn't hind-sight great?) there were little things he maybe did a bit differently, but as he was my first-born, I had no real bench-mark to compare him to. He was hitting a lot of physical milestones at the right time, even if he was lighter and shorter than average. He was off and walking like a pro at 11 months, and I am sure this was a big accomplishment to him, as he had been putting full weight on his feet from two months on, and seemed to be calmed by being held in an upright position, which was not practical for me to do all day long! Other than that he seemed to be a typical little guy, loved his cars and trucks, and was content to sit and play with them for long periods of time, which I will admit was welcome once his little brother came along when he was two. Preschool was when we noticed it was getting rough for him. The teacher told us he had outbursts when asked to change activities, and he was fairly rigid with what he would play with in the play room. I was concerned that he was taking his sweet time in the potty department. He was four before I could get him to not need a diaper during the day, but he still insisted on one at night, mostly as he was holding his poop in until then. Without fail, he would call out that he had pooped in the diaper within a half hour of one being put on. This persisted into kindergarten, at which point I was getting frustrated, as baby #3 was on the way, and I was in no mood to be diapering THREE kids!
Medically, we learned there was no reason for him to NEED a diaper, so began the coaxing and pushing to use the toilet. Once this was accomplished we thought that was that, but no!
Back to talk to yet another doctor, who felt he was experiencing pain from holding it in for so long, and this was just his digestive system adjusting.
By now the school had convinced us to have him tested, so began the questionnaires, and then the WAIT. Finally at the beginning of Grade 1, the BCAAN team was in town and ready to assess him. The psychologist was really nice and assured him she was a special "talking" doctor and that no needles would be involved. He was fine with that and went willingly for her battery of tests. When he came out of the room he had a handful of stickers he had earned. The next day was the talk with the pediatrician. She too, assured him no needles would be involved, so off he went!
The next day was the big meeting with everyone present to discuss their findings. Lots was said, but the upshot was that they did indeed feel his symptoms and behaviours put him on the autism spectrum. The pediatrician said she was on the cusp of a decision, and when he picked his nose with no apparent shame or embarrassment that was the final clincher. She announced the PDD-NOS diagnosis, then added in that with all the information provided to her, she was also going to say he has ADHD.
I remembered clarifying the diagnosis by asking if PDD-NOS was similar to a diagnosis of Asperger's. I was told yes, it was, but that Asperger's is an old diagnostic term, which is why it never came up.
The upshot? We now know the reason for his behaviour, but now we have to figure out how to work with it. Any time I get frustrated now, I tell myself he didn't come with an owner/operator's manual. I have had to write my own. Like so many other aspects of life, it's a work in progress, with multiple updates and revisions. Lots of things are learned by trial and error, and some things still yet need to be learned. He's a good kid, and I feel saddened when I can't help him as much as I think I should be able too. I am grateful he's verbal at least, so we can sometimes accomplish things through discussion, but even that can be tedious at times. I have had to explain sarcasm and expressions to him, like when I saw something he liked, and said "Wow, that has your name written all over it!" Of course he looked, and DIDN'T see his name written on it anywhere, so I was challenged on my choice of words. Thankfully, he understands that one now, so if I say it, he'll usually just agree! Now that he's getting older, we're getting into the doozy territory, so I try to push any embarrassment aside to explain. I just want him to know that even if I am winging it, I am here for him--and trying!
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