I’m ready to tell you something.
I’m having an identity crisis.
Two years ago I transitioned from being a Mom looking for work, subsequently finding work and then struggling with balancing work and home (MBA Mommy) to being a Mom of a Boy with Asperger’s (MBA Mommy), leaving her job, ramping up on all things Asperger’s and then struggling with the daily challenges that come with having an extra special kiddo.
I’ve invested a lot in this identity. I’ve spent hours, days, weeks, months becoming the best damn MBA Mommy I could be. For myself. For my family. For my Z.
And then, a few months ago, that all changed. I may not be a Mom of a Boy with Asperger’s anymore.
And while I SHOULD be screaming it from the roof tops and jumping for joy, I’m actually struggling with it.
Let me back up a bit.
I’ve mentioned before, that Z’s progress has been nothing short of fantastic. And that we stopped his behavior therapy last summer but continue to do OT on a weekly basis, for his sensory needs. We also hired an aid to come into his class last fall to help with some behavior issues. This was short lived though because once she had a chance to teach his teacher some strategies, the issues went away. What I failed to mention was that when we switched OT’s last September, he was re-evaluated by the new OT. And said OT looked me straight in the eye and said (paraphrased),
“You know, he really doesn’t present as autistic. Granted, I’m not qualified to diagnose autism, but I’ve been in this business for 25 years and I’ve worked with a lot of kiddos on the spectrum. And we don’t see the eye contact, interaction and reciprocity that Z shows in kids diagnosed with autism. Now, I don’t know if he was mis-diagnosed before or he’s had enough intervention at an early enough age that some of the difficulties he had have now been overcome. What I do see is a very intelligent child that has sensory integration issues. And once we can address those challenges, I think you’ll begin to see a much happier and better behaved child.”
Don’t get me wrong, it’s wonderful news. As are the follow up reports from teachers/administrators in his school that say he doesn’t stand out anymore. That a stranger coming into the room wouldn’t see any differences between Z and the other squirmy boys in the room. I have a hunch that if we got Z re-diagnosed he wouldn’t fit the criteria for Asperger’s Syndrome anymore.
So, why have I been so hesitant about announcing this wonderful news? Certainly not because my kiddo is gaining the skills he needs to be happy, make friends and succeed in school (please note that I didn’t say he’s cured of autism). No, I’m over the moon about that. I’m hesitant because, again, I’ve invested so much into this identity, this label, this way of understanding and relating to my child that I’m a little confused as to what these new developments signify. It’s a little unnerving to have continual dramatic shifts in your outlook on your life in such a relatively short period of time.
And, why am I hesitant to have him re-diagnosed? Certainly not because I want him to keep a label that has such amazing cache. No, I’m over the moon about that too. I’m hesitant because if he no longer has a diagnosis of autism, some of the service he still needs, regardless of the label, may not be available to him. Especially if the DSM-V does change the criteria for autism. John Robison, author of “look me in the eye” and “be different“, wrote a great post that summarizes his concerns of a criteria change —> here <—-.
I find myself thinking, yet again, “What now?”, “What next?”. Do I need to change my blog name to MBSPD (Mom of a Boy with Sensory Processing Disorder) Mommy? MSB (Mom of a Spirited Boy) Mommy? None of those fit right.
More importantly, what do I tell people about Z?
J, as usual, was able to cut through all my hemming and hawing and state the most important and obvious bottom line. After one of my many monologue diatribes he told me, “It doesn’t matter what the label is. We know our kid. We know he’s not a typical kid. We know he struggles with sensory issues and anxiety. But we also know what he needs. And, right now, he’s getting it. That’s really all that matters. Why change anything?”
And, as usual, J’s right. All that matters is Z (and S, of course). He’s getting everything he needs right now. He’s doing fantastically well even with the continued challenges he faces. It doesn’t matter what label he has, he’s still Z.
I’ve heard stories from other parents with kiddos that have an autism diagnosis about these shifts that come throughout the years. They call it the “best possible outcome”; when your kid has progressed enough along the spectrum that he essentially falls off it. Z is a testament to the importance of early intervention. If we hadn’t addressed his challenges head on with everything we had, it’s very possible he would be a much different child right now. A child who wouldn’t be able to handle a full language immersion program. One who couldn’t/wouldn’t show affection for his Mom or be able to play with his sister. One who was frustrated that people around him didn’t understand him. One who didn’t have the tools and skills needed to explain himself and instead relied on meltdowns and lashing out to get what he needs.
I am so grateful for the preschool teacher who, 2.5 years ago, told me something I didn’t want to hear. I am so grateful for all the angels who have gone above and beyond to truly see my son. I am so grateful for HIMAT and early intervention and J’s and my willingness to shove aside our ego’s and admit that our kiddo may need some additional help. I’m grateful for the support groups I’ve been a part of, the same ones I haven’t felt comfortable participating in recently given this new (and wonderful) development. And I’m grateful to everyone who reads and comments on this blog, letting me know that I’m not alone in this, that they get it and that they care.
I guess I’ll stick with MBA Mommy. It’s got a better ring to it. Besides, his/my/our story is far from over. 🙂