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So Long.

January 9, 2014

It has been so long since I wrote here that I forgot my password and had to convince WordPress to remind me of it. This may or may not be due to advancing age or the fact that my mind is so full that things are starting to drop overboard.

It has been so long  that Bobo has hit double digits, and I shoved forward another year into my forties.

It has been so long that we are almost halfway through fourth grade, which has been up and down, with lots of successes and lots of hard things. And more people and things have drifted away from him, and some new opportunities have come up, and some old friends continue to stick around, and it is work, hard backbreaking work, all of the time.

Life, in other words, has become more of what it is and will be. Which includes the shifting impermanence I didn’t realize was part of raising a child with special needs, especially one who finds deep solace in routine and in long-lasting individual relationships. This may or may not be also true for his mother.

Our family insurance changed (not by choice) to one with a higher copay and mandatory physician authorizations and restricted networks. In one fell swoop, we lost our GP pediatrician of 9 years and each weekly occupational therapy visit will cost $50. Not that we are even going to OT right now, because we have to wait for an authorization from a doctor we technically no longer can see. And Bobo’s beloved occupational therapist is having a baby in April, so the meter is running. He is losing his beloved long term autism teacher to a sabbatical. And we are being forced by the district to switch schools in the fall-new staff, new routine, new start time, new absolutely everything with no guarantee it will work.  Well, okay then. So long, everyone.

I realize these constitute first world problems of the highest degree–we HAVE health insurance, and a viable new school option. But it all highlights the fact that there are many people who are invested Bobo (and they genuinely do; he is quite a charmer) because it is their professional role to do so. Roles change, as I well know from my years in the nonprofit world. And each time they do our family is more and more isolated, and I have to regroup and throw myself into re-engaging with new relationships and new people and scanning the horizon for new services.

I’ve written plenty about Bobo’s emotional issues–how easily his system gets flooded, the fight-or-flight reactions which can make him rigid or even explosive at times. These have inexorably pushed us out of many of the typical ways a family feels connected and in community, including having additional children (we knew fairly early what we were in for and didn’t want to risk compounding or even repeating the problems). I work hard to compensate for that–we have an amazing spiritual community, he does any and all activities we think he’ll thrive in, I personally have a great group of friends and am not lonely or pining for human connection. But none of this kept me from weeping into my pillow last night because my child cannot yet pack a lunch, or remember to brush his teeth, or stay away from a screen without hounding, or do tasks without multiple systems and reminders (which he tries his hardest to buck and get out of), and I can’t yet see his path to making a go of it in the world. It twists into unexpected switchbacks every time we lose some of our helpers.  All I know for sure is that the path is so, so long.

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2 Comments
  1. Jody permalink

    You are such a great writer! I wish I could give back to you the insights you have given me. I too fear for the future path of my 15 year old and how she will function in this world, and I try to cling to the rays of light she brings me, but it is so hard and such a long road. I’m thankful for your sharing of your journey. We can do this.

  2. Molly Illes permalink

    I’m sorry. I know stops and starts set everyone back and our system is so very broken. Just know that, as a representative from your spiritual community, you guys are loved, respected and WE are not going anywhere. We’re here to support you and your family in any way we can.

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