Let’s call it an investment in the future…shall we?

Yesterday evening, with my patience at a very low ebb, I told J we were going to Urgent Care.  He had been hitting his head quite insistently, and his hand looked redder and angrier than usual.  The egg sized bump on the side of his head was not giving me any joy either.

Off to Urgent Care we went.  Our friendly neighborhood NP said “wow, it’s been quite a while since we’ve seen you!!!”  I admit I glared at him…  J was all too eager to leave, and I told him that he was having his hand and his head looked at because enough was enough.  J had to have tangible proof that his SIB is a medical situation.  Something has to help him get a shard of understanding about what he is doing to himself, right?  This was it…

To any outsider watching my interaction with J I must’ve looked like the worst mother ever.  I was very no-nonsense, very terse.  The average outsider will not know that this has been going on for a while and I have been fighting the good fight, working through meltdown after meltdown, witnessing SIB while trying to deflect it.  The average observer will judge me based on the lowest ebb of patience…

Explaining that our son has ASD and that he is anxious and has been hitting himself invites judgment whether we want it or not.  People, even when they are medical professionals who should know better, will wonder why the band-aids, why the SIB, why the haunted look on J’s face and the barely contained frustration in our expressions.  We ran the gamut of explanations: the band-aids are not for injuries…they’re comfort items; he hasn’t bled, and he seems to be fine, but we are concerned; he has been med-free since December, and this is just a prolonged period of anxiety that seems very difficult to resolve.  We want to make sure that he hasn’t broken anything…

I would love to attach to that “do you have kids?  Are they neuro-typical?”  I don’t because then I’d be just as judgmental as people are.  I can safely say that “if I’d known then what I know now” my life would be different, but we are young and clueless for a reason, right?

J’s hand is fine.  No fracture.  Just bruised.  Very bruised.  He must be in pain, or at least sore, the NP we had never met before told us.  The head is just a bump…it might break up sooner rather than later, and we might see bruising on the side of his face.  His skin is fine…dry and a little scratchy from all the band-aids…have we tried medical tape?  I tried to explain that there is a pattern to how each band-aid is applied, but then I realized that I was wasting my breath, and said I’d look into it…

J behaved for the X-rays.  J behaved while we waited for the results to come in.  J wanted to come home, but he could tell I meant business.  When Dada went to the grocery store I told J we were waiting in the car.  He was quiet, and he realized that I was concerned enough to put him through going to Urgent Care, and upset enough to just say “see what happens when you hit yourself?  We don’t want to do this, but we have to because if you get hurt it’s very important to us that you are properly seen by a doctor.”

He came home, had his dinner, and didn’t hit himself.  He tightened his wrist brace, and I had to loosen it…I know that’s another comfort thing, but we can’t cut circulation, can we?  So I’ve bought a new brace to replace this one that is looking frayed and forlorn, and this morning I made sure that I kept J busy doing the seasonal cleaning and rearranging of his room.  He is happy with the result, and he was calm and focused on that task until nearly 10 a.m. when we came downstairs.  At that time he wanted fresh band-aids, and I helped him with those.  He was going to hit his head, but he realized I was looking at him (quite calmly…I didn’t glare…I was very impartial, but I wanted him to remember where we were last night) and he thought better of how hard to do it.  He simply tapped the sore spot he has been dedicated to creating for the past couple of weeks, and then placed his hand where I could take care of the band-aids.

We’ll see how the rest of the day goes for both of us.  I admit I am frayed, shaken, worn out, baffled and grasping at straws.  The more I think about this, the more I am outraged at the lack of support so many parents can find out there.  We were discussing this last night, and I told Dada that no wonder so many parents of disabled adults seem so disenchanted.  There comes a point when you realize that it’s not that the creek has run dry, but rather that there is nothing other than the creek bed, and you live in the desert.

But we plod on…our feet feel heavy, but we’re not crumbling.  We are, if anything, even more determined to change things for ourselves and J.  We might end up packing up and moving to a kinder climate sooner rather than later, and we might end up changing our entire lifestyle to handle this better.  We are determined.  Shaken, stirred, frayed, scared, anxious, but determined nonetheless.

I do curse a lot these days.  I apologize for it…or maybe I don’t.  I have to do something, right?

Off I go to deal with everyday life…


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