Welcome To Your Life…There’s No Turning Back

Coming To Terms With The Word “Disabled”

  • 8:01 a.m. Engage “Late for Work Trying to Get Stuff Done Before Jersey” panic.
  • Banana Berry Almond Yogurt Smoothie. I’m attempting to listen to my nutritionist and drink a source of long-term sustainable energy in the mornings. Also, the Nutribullet people lied: the Nutribullet does not easily break apart almonds. 
  • The Mixtape on iTunes Music: 80’s and 90’s music today.

Acton Toyota, Littleton, MA

Sitting in the dealership’s waiting room, which is just behind the showroom, waiting for the mechanics to finish Baby Blue’s standard, pre-NJ and, coincidentally, 105K mile oil change and tire rotation. I always get my car checked out before I go to the Garden State. Just because I’m 50 doesn’t mean my father doesn’t worry about me when I’m on the road. I like to think knowing my car is automotively sound means he worries a little less.

This is probably not the best time to go on Mom Duty. A family member is going in for some heavy duty surgery. There’s a bear of an airport project on my desk at the office. There are freelance writing assignments on my desk and I’ve got until May to start and finish a baby quilt.

…and my fearless Camry needs new front brake pads…!

Tears For Fears definitely got it right…

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I head on over the service desk, sign off on the work order for new brake pads, gasp internally at the bill, and thank the service manager. There’s a reason I run my car into Acton Toyota for a general checkup before I travel. This is it.

One of The Omen’s frequent sayings (whether he knows it or not) is: “There is never going to be a good time…”

Okay, it is always an excellent time to go on Mom Duty. It doesn’t matter what else is happening. I love Mom Duty, the time I get with my son live and in person. I started tracking the weather and counting down the “days and the miles” over a week ago.

This month’s trip is a multitasker. TheEx and I are signing off on kiddo’s guardianship paperwork and special needs trust next week. This needs to be done by the time kiddo turns 18, in just over a month.

The guardianship paperwork establishes that Leading Man #1 is disabled.

Disabled. I hate that word. It simply does not describe the child I have (helped) raise. Disabled is a label. Disabled is how my son presents in comparison to his peers in on educational and psychological evaluations. Disabled is how my son communicates and functions.

Disabled is not who my son is.

Intellectually, I know my son is disabled. However, that disability, Autism, and all it entails are my normal. I don’t think, I just do. Since Leading Man #1 entered high school 4 years ago, TheEx and I have worked through special needs attorneys and advocates (the superlative Karen Edler and Michelle Krone at Price Meese, Schulman & D’Arminio, PC), family law attorneys, the local school system, neurologists, the county special needs team, psychiatrists (welcome to the wonderful world of Autism!) and kiddo’s school (the equally superlative ECLC of NJ) to get kiddo what he needs to thrive. We’ve fought, and talked, threatened, and pushed.

I’ve been so busy advocating for my son, I didn’t stop to think about how I felt about signing the guardianship paperwork. As documentation of my son’s disability, it’s grim stuff. Parents do not see their children the way the law or a child study team does. We see our kids. We do not see scores and percentiles. We see love.

I came close last year, when we signed off on 1 of 2 special needs trusts that need to be established for Leading Man #1. That same day TheEx and I marched into a verbal showdown with Leading Man #1’s psychiatrist and enrolled him in a county special needs program before I took kiddo to my folks’ place to celebrate his 17th birthday. There wasn’t time to think. I just did.

You would think that all of those hours on the road between Boston and Bergen County would have given me time to process this. It didn’t. The drive through, mostly, Connecticut, is my transition from New England Workaholic to New Jersey Mom and back. Time with my son is hard to get. I slowly mentally leave work behind as I travel southwest and the traffic gets denser. On the way back up to Boston I reconcile myself to leaving my son 210 miles away.

In truth, I wouldn’t even be thinking about any of this if I hadn’t just, thanks to the sheer unpredictability of New England winters, been forced off the road for a full two months. I swore I would actually get to know Littleton this year (we’ve only lived here for 9 years now), but still, time is not my Mombrain’s friend.

I also have it easy. I don’t give myself excuses from full-time parenting because I live out-of-state, but given that we haven’t found a portal between Boston and Bergen County, and I’ve yet to encounter The Doctor and/or a blue police box, I miss quite a bit. I can’t be there for the day-to-day. TheEx is the front line warrior. I’m the administrator, advocate, and “don’t make me bring his Mom down from Boston” IEP meeting secret weapon.

That doesn’t make that paperwork any easier.

I wouldn’t have any other kid than the one I have. Leading Man #1 truly is perfect just as he is. I just wish that the legalese wasn’t so stark. It should really say something like this:

“Yes, J. has impairments and will need government services and his parents for the rest of his life. No, he may never get to college. J. is still a vibrant, creative, hardworking individual and a vital part of our community.”

Maybe the lawyers will let me scrawl that as a footnote…

–CMR
Littleton, MA

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