I have the biggest “ah-ha” moments when I talk with other moms.
I was having a conversation with a fellow special needs mom and she said, “I think our kids fall in the middle of their respective spectrums.” I never thought of that before because I was so focused on not labeling my child. I wanted to remain open to whoever he becomes. But now that Nathan is almost four I think it’s safe to say that is probably where he is falling–right in the middle of his spectrum. He certainly isn’t high-functioning if you base that on his ability to eat alone, because we still haven’t lost the blasted feeding tube. He’s not low-functioning either. This boy crawls and pulls up on my cabinets and, I believe, is eventually going to be walking. He also has a way of non-verbally budding into conversations that shows he knows exactly what we are talking about.
The middle of the spectrum.
What do I do with the middle? It’s unchartered territory. How much do I push him? How much do I accept him where he’s at? The middle feels like the tightrope walk. It feels undefinitive and murky. It’s gray and hazy whereas I prefer black or white.
The extremes appear easier to me. If he was high-functioning I would have high expectations and push him really hard so that laziness didn’t get in the way of him becoming all that he was capable of doing and being.
If he was low-functioning then I could pull back on therapies and resign myself to the physical effort required of me to care for my son. A wheelchair seems easier in some ways than the way he throws his body around the house willing it to move the way it needs to.
This dear friend and I also talked of how we wish we could fast forward a little father into the future and see a little movie–a trailer perhaps–of what our kids are doing. If I could just catch a glimpse of Nathan in ten, twenty years, then I could make more informed decisions now about how much and what kinds of therapies for him now. I could prepare for the level of independence he required as an adult. Mostly, I want to see how his childhood personality is expressed as an adult.
When it comes to personalities it seems like we all are born with a core temperament that stays the course, yet rages something fierce in puberty, and then eventually softens with maturity and middle age. The personality we have at four is worn better at 40–like a well-loved leather bag.
So what does that mean for Nathan’s personality? Will he still be super sweet in his gaze toward you to get his attention? Will he still need the level of physical touch he does now, because that could drive people crazy as he ages (read: me). Will he continue to try to make people laugh with his non-verbal jokes? Will he be talking in sentences? Is he still going to be constantly putting things in his mouth? And for heaven sakes is he still going to be carrying that ball with him wherever he goes?!
I just want a little movie to know that it’s all going to turn out okay.
I don’t know how it’s going to end this side of heaven. I only know that in the end it will be okay. If it’s not okay, it’s not really the end, which is where we are at now. In the middle of it all. In the middle of life and the middle of the spectrum. Taking one day at a time and trying to keep things in balance best we can until everything is restored.
But hope that is seen is no hope at all. Who hopes in what they already have? But if we hope for what we do not yet have, we wait for it patiently.” – Romans 8: 24-25
Also be sure to check out my list of Favorite Books on Disability!