Archive for November, 2018

Woke

I read the message of a dear childhood friend with surprise. She talked about the impact of the various health crises of her special needs child on her other children, and how she and her husband had not really tackled that impact well in the midst of everything going on. She is kind of a pillar of amazing-ness to me; she has handled their child’s medical issues with a strength and grace I strive to emulate.

I quickly responded in support that we are all doing our best in any given moment, and I believe that of her completely. I then gently tried to extend that sentiment to myself to see how it felt. I found myself believing it, maybe for the first time ever.

I think I’ve spent 17 years judging – and often judging harshly – myself and how I have handled things with C. I am a fixer at heart, a researcher by trade, and I’m always convinced there is an answer just around the corner. I keep searching for it, because I know if I find it everything will be better.

But I give. I quit. I’m done. No more of that. Whether it took distance from C to realize it, or if I am just waking up, I don’t know. It brings me to tears to think about it – holy cow, I have been hard on myself. From day one, if I’m honest. Not good enough, not doing enough, not doing the right thing, not giving enough, not loving enough. Yet the reality is I have done everything, given everything, and loved so hard it sort of broke me.

I am always doing my best. And I can always do better. Therapist NC wrote this statement on a whiteboard at our very first meeting with him. How I hated that sentiment – and many others – during those early days of therapy. I couldn’t live with dichotomies like that one. I thought it excused things. Gave reasons for C to be an ass and then say he was doing his best in the very next breath (which he did more than once). But perhaps what it really did was bring to light my own deeply-held belief that I was never, ever at my best. Doing better was something I should be doing more of, even though I felt like I was constantly working at it. I had the second part of that therapy statement down, perhaps too much so.

It’s exhausting living with the belief you are never good enough. I am now trying to give myself a little bit of a pass on the “I can always do better” part. Even though I’m not doing exactly as instructed by Therapist Saying #1, I think it’s an okay way for me to work it. Putting down that heavy weight has been a great relief. And in this week of Thanksgiving, I find myself grateful to have finally reached this point of believing I am doing – and have done – my best.

November 18, 2018 at 3:36 pm 2 comments

Unpacking

I wandered into my appointment with my therapist this week without a whole lot on my mind, really, except ongoing pain around which life seems to revolve right now. What came out of my mouth, however, were several revelations I’m not sure I even recognized for what they were until I spoke them aloud. Whether a high pain level lowers my internal filter or makes me care less what anyone thinks, I’m not sure, but it does seem to be an effective conduit for getting things out of my head and into the universe. And somewhat surprisingly, lightning bolts didn’t strike me down immediately for saying these things. Go figure.

The worst of the worst? I’m fairly ambivalent about seeing C when we visit him over Thanksgiving. I haven’t seen him since he left here in August. And he left after a rather violent episode that left us both hurting. Hubs was out of town, C went for pills I inadvertently left out, and the rest is history that will haunt me for years to come. Truth be told, I don’t know that I have actually forgiven him for that incident which, if I’m honest, is probably more at the root of my ambivalence than anything else.

When we talk with C on the phone, he sounds great. Things come out of his mouth that astound me. He seems healthy, well adjusted, and happy. But I don’t really trust any of it fully. It all feels artificial. We won’t know how he’s truly doing until he comes home, and even a visit won’t tell us much. Only when we are all back in our daily routine will we be able to tell if any of these newfound skills will actually stick, and I admit to not having a whole lot of faith in this process. Not really because of C, his treatment center, or Hubs and me. It’s more about the best predictor of the future being the past. Habits, dynamics, behaviors…they are all difficult to change.

So I wait. I continue to work on my sense of inner calm and peace no matter what is going on around me, because I know that’s really all I can do. Staying in the moment and all of that. I am a lot better at that particular skill than I was a year ago. Still, when someone is throwing things, body slamming closed doors, going for knives and pills, and screaming hateful things, it is fairly difficult to be very Zen. I am trying to let those incidents fade from my memory and recognize that a seven month break is pretty significant. A lot of change can happen in this time C is away.

Yet that voice in my head and heart continues. “What if?” I just keep trying to counter the negative answers with, “What if it’s great?” I am reminded of my own Nana, who had unrelenting faith in all of her children and grandchildren. Cousin X could have murdered someone and she would chalk it up to a phase that would pass. So I’m left wondering. What if C grows up, gains insight, recognizes his own role in life, and chooses to jump down on the right side of the fence? Now wouldn’t *that* be something?

November 11, 2018 at 4:17 pm 2 comments

You say “potato,” I say “potahto,” but let’s NOT call the whole thing off.

I’ve sat on the sidelines for many years while the discussion about grieving the life you thought your autistic child would have has gone on around me. I’ve read thoughts from adults with autism who are angry at parents for feeling this way, and I’ve read thoughts from parents who resent being told by adults with autism how they should feel about their child’s diagnosis. The entire discussion bleeds into the cure or not cure camps, “fix” or not “fix” camp, and whether or not autism is a difference or a disability.

None of that really matters to me. I hope my readers on all sides of the issue will forgive me when I say for me, the above is all semantics. I know it means an enormous amount to people how we talk about our kids because it says a lot about how we feel about them; and that how we talk about our kids extends to the autistic adults who have blessedly paved the way for our children. My intention is not to minimize the discussion, which I think is an important one. But I hope all of you will forgive me for dropping all of you, and talking only about my child, my feelings, and my life. I’m not trying to speak for anyone else – really just me.

I do mourn the childhood C would have had without autism in his life. One day many years ago, after dropping him off for school, I watched several children about his age walk to another school in the neighborhood, and felt an immediate pang of something…sadness, regret, loss – I’m not really sure what it was, and I pondered the feeling for quite some time trying to figure out where it came from and what it really meant. I decided I was missing my own childhood as well as feeling sad that C hasn’t had a childhood like my own – which, in hindsight, seems rather idyllic and simple and happy.

Somewhere, somehow, this feeling of loss of what could have been has been made out to be something it’s not. I’m not mourning my child. I’m not grieving the loss of some other life. I don’t wish he could be a different kid. What I wish is that his childhood – and I’m extending this to his life – could be easier. I wish I could better help him navigate his world. I wish the world could accept him more easily. I wish I could better handle the stress when trying to get school issues fixed, medical issues solved, and behavior challenges calmed. Yet somehow, saying I feel sad about these things has been turned into my being selfish, not loving my child just the way he is, wishing him fixed or cured, or that autism = bad and typical = good.

I mean none of that. I hope the parents who express grief or sadness or difficulty in accepting their child’s diagnosis mean none of that. My challenges in dealing with the things autism has brought into my life don’t really reflect at all any underlying feelings about C or that autism is a disability vs. a difference or anything of the like. I simply wish that it would all be easier. For all of us.

November 6, 2018 at 3:22 pm Leave a comment


It’s all autism, all the time.

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