When someone first dropped the word “autism” on me a year ago, I have to admit, I wanted to punch her. Like, literally. I could see me reaching out and snatching that cute bob right off of her head. I had taken Jp to see her to get a jump on the expressive language that was not coming as organically as I (a serious overanalyzing mother) had hoped and here she was rocking my poor little world!
I worked with children with autism. I knew what it looked like; how it manifested in two-year-old’s. My child was NOT autistic. I did not know what college she went to but I started to think it was some online shebang. I determined that that woman was crazy and trying to get more money from my insurance company. I secretly hated her.
Now, my husband didn’t take such an emotional response. He had a “wait and see” thing going on. I was jealous. I could not simply sit around and twiddle my thumbs…I had to KNOW what was going on and so I embarked on obsessive research that raged on for months. I started to sit back and view Jp in a more clinical (less mom- more scientist) fashion and began to see what she was worried about. I did research into the various parts of the “spectrum” and it opened my eyes enough to realize that Jp was likely going to fall into the category of PDD-NOS .
And slowly, oh-so-slowly, I became okay with that.
I began to stop looking at his tantrums and anxieties as something that he was doing “to” me or “because” of me. I emotionally relaxed, I worked on switching up my parenting practices, and I truly became a better mother all because my patience level expanded exponentially with my knowledge level and I learned to roll with things the way one only can if you do not feel forced to change it.
My husband was still very “wait and see”. To the point that he would not have a frank conversation with me about our child’s delays at all (the main reason that I started this blog was that I process by communication and Christopher was not ready yet to do so). We took two wildly different roles (as always with our left/right brain tendencies): I obsessed and researched and he played and waited.
It took the better part of a year for everyone to come back together but now we are officially there. Though, even speaking openly, we still have our differences of opinions…but just sitting down to discuss these types of things makes me so ecstatic. I feel like we are on the same team, finally, and that is the team that is going to kick butt and get Jp every and anything available to succeed.
However, even people on the same team do not always want to run the same plays…
Firstly, let me explain that the original thought of PDD-NOS as a diagnosis is no longer. They have decided, in all of their infinite wisdom, that the “spectrum” of disorders would be streamlined to one classification of Autism (with varying levels of severity I, II, III) and the criteria for that is much more rigid. Jp will not (or, I should say, I am pretty sure) fall there. I just do not see my “gray area” child as meeting those characteristics. At all. There are some other communication disorders that he may classify as but the levels of deviations from the mean are high (two standard deviations and that is extremely delayed and I am not certain he is that far behind) and it has been a good while since he has been evaluated for the receptive and expressive delays so I have no idea where he will stand there. Absolutely no clue whatsoever. So, after we finally became okay with PDD-NOS, we learned that we are back up in the air again.
My husband sees this and know that means that Jp will be mainstreamed (I agree) and may never actually have a diagnosis (no matter what we do) so he believes that it is in his best interest to be solely around neurotypical kids so that he always strives to be better. I worry that being the kid with delays -that does not quite know how to communicate socially- and spending all of his time with kids that are father ahead than him will hurt my already anxious and sensitive child’s fragile self esteem.
I want him to do activities that include kids with no difficulties so that he learns how to behave socially (he struggles here), of course, but I also see him in these environments as the child off to the side. The one standing behind them and watching as opposed to actually playing. Three-year-old’s speak to each other in their play. Jp does not know how to engage quite yet. So, while I love that he is learning from it, I am not sure how much actual fun he is having just standing around watching.
I also want to take him to activities for children with autism (this is where we disagree) as he may not be learning anything from them, per se, as his cognition level is higher but they play in a very non-verbal way and give chase and run and Jp laughs his little heart out and has an absolute ball. He is included and not just standing there waiting for someone to notice him or annoying other children for getting too close to their face or calling them “baby” (which I keep working on but he always seems to do it and there is nothing a three-year-old hates more than being called a baby).
I want Jp to be the best Jp he can be (truly) and I work on social boundaries endlessly but I also want him to be a kid and have fun. I want him to not always be the one that is different.
So, weigh in, please! What do you think is the best thing to do? Even though a group of Psychiatrists changed the DSM doesn’t mean that my son is not the same kid that he was and I can see both sides with crystal clarity. What would you do in our shoes?
I'm just living minute to minute, hour to hour, day to day.