I wrote the below Thursday evening, and I was well and truely tired. I told my husband "I am weary". I told my online friends I was too burnt out to even answer a question from a newer mom about learning how to muscle test. I hit the line in the sand that tells me I have caregiver fatigue. An energy work session, therapy session, and 2 footbaths later I am less fried and now sharing my thoughts from the other night. As caregivers this is a spot we have to be very mindful of because if we don't keep ourselves together, we won't be able to take care of our kids.
You all may have noticed that I’ve taken some steps back from my online presence of late - I’m blogging less, I’m in fewer facebook groups, I’m mentoring much less, I’m posting stuff about me WAY less. I’m just plain weary. Its beyond tired, its fatigue to the point of tears from a kind word. Its physical manifestations of tension - I’m currently getting PT for tennis elbow (having never played tennis in my life – and Chiropractic and Massage were not resolving, so at 2 months in I asked for a PT referral), and they’ve decided that my incredibly tense traps are part of the problem so now I get dry needling or cupping done… and it hurts a ton while it happens, but the next day – my neck doesn’t hurt. Let me rephrase that – this last year my neck has hurt so much every morning that I’ve had to go straight to pain relief sprays and meds, and in fact have purchased something like 8 specialty pillows in the last year – none of which fixed it. Regular Chiropractic and massage didn’t help that either. So, now I’m a pincushion 2x a week. And the root cause is the level of tension in my trapezoids (shoulders)
So Why am I writing this? Couple of things have this on my mind today.
I had a conversation with my Chiropractor this evening. He’s a special needs dad – his son has severe CP and is wheelchair bound. We had a conversation about how the general public doesn’t understand the level of exhaustion that comes with special needs parenting and that in some ways he thinks parenting Dominic – who has a completely healthy and functional body, and damaged cognition – is more difficult than parenting his son who has a non functional body and incredible cognition. People see his son, the chair, and they help. People see Dominic and assume behavior problem / inadequate parenting, and they point. They don’t offer help. Autism is in many ways an invisible disability.
This week were our annual renewal meetings for both the Medicaid waiver that pays for most of Dominic’s therapy (and my second job, as his 21hr a week CNA) and The Resource Exchange family support program, which gives us funding for things like respite care. Both of those meetings were yesterday. Both were over an hour long, and both were emotionally grueling. One of the things we have to start thinking about is what we do the day Dominic turns 18 – do we petition a judge for full guardianship? Do we get power of attorney? Do we do nothing? Do we get Dominic SSDI and start charging rent for him to live here? Do we find him a day program or a job? Its heavy stuff on top of an already heavy burden and there is absolutely nothing anyone can do to carry that burden for us.
So what do I do about it? I do at least one self care activity a week – massage, pedicure, chiropractic. I’ve been seeing a therapist weekly for years who helps me manage the anxiety (yes, all of this comes with a huge level of anxiety about how the world will treat Dominic, how or if Dominic will manage to live independently, will he end up developing full seizures, will he get assaulted at school and not be able to tell us…. That’s a rabbit hole), I’ve joined a spiritual group of like minded women that meet regularly and have ZERO to do with autism. And I’m making choices to spend more free time outside the autism world than in. That means that maybe instead of going to the Autism Conferences, I choose to go to women’s retreats. Or instead of spending hours on the phone mentoring new autism moms – I read a book. Its a weird mindset for someone who has been so active in the autism community, but what I’ve realized this past year as I’ve been slowing stepping away from it – Dominic does better in general when I am not immersed in all things autism.
Its that whole manifesting our thoughts thing. If I focus on Autism, I get autism. It makes me realize that the moms who blazed the trail before me but aren’t around much anymore may be onto something.
No, this does not mean I am stepping all the way out of the community. It means that I've recognized that full immersion is not healthy *for me* right now.