Hope is a Good Thing

The last couple of weeks have been an emotional roller coaster for Cheeks and me. We’ve had a lot of hard moments. I’ve been torn about whether to write about them, because I feel so strongly about treating him Screen Shot 2015-11-20 at 1.00.50 PMwith respect. Sometimes that means protecting his difficult times from public view, as any of us might do for ourselves. On the other hand, it’s also important to me to be authentic about our experiences, and that includes the less attractive sides. There’s no shame in our story, so there’s no need to conceal it. I land on different sides of that argument depending on the circumstances. This time, I have decided to tell the story.

A few months ago we were introduced to a teaching method for students with communication disorders that we have come to believe will be a good fit for Cheeks. It’s a somewhat controversial methodology, mostly because mainstream credibility only comes from having a wealth of data supporting its efficacy, and this program does not yet have that. But as I have written here before, the decision to try something with Cheeks has to be subjected to two questions: 1) Is the risk low enough relative to the potential reward?; and 2) Can we do it in enough isolation that I don’t attribute changes to one intervention that are actually due to another? Having passed those two tests, we decided to try this program. I will write more about that in a future post. It’s not a private matter, just not the topic today.

Early results have been good, Cheeks is responding well to his academics. So well, that he is showing capabilities I have long believed him to have, but that we have been unable to access before now. I can’t overstate how huge this is for both of us. I’m able to see his intelligence, and he’s starting to be challenged at his true level of ability.

But, my mother always said that nothing worth having comes easily. And so it has been true this time as well. Cheeks has been experiencing so much disruption in his psyche that it’s manifesting itself in some pretty extreme behavior. He’s always shown self-injury when he’s upset or anxious, and lately we’ve had an increase in the intense moments that trigger it. Even more concerning is that he has shown some aggression to me during these tantrums – something he has only done a few times before in his life, and never this deliberately. Right now I’m sporting a few battle scars.

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One of our many happy moments.

I’m left with this strange combination of emotion. I am so filled with hope and certainty that we are doing the right thing in starting this program. That certainty has never come to me with any therapeutic decision we have made up until now. It has been absolutely glorious to feel it. But I am also distraught over what ostensibly appears to be regression in his behavior. There really is no pain like watching your child in so much distress that he causes bruising and bloodshed to both himself and someone he loves. I know he doesn’t want to feel that way, and he doesn’t want to hurt me or himself the way he has. I’m constantly wondering when the wrong bystander will see something out of context and his or my security will be threatened on a whole new level. And the process of experiencing all of this at the same time has been emotionally exhausting for me.

Autism isn’t pretty, I already knew that. And my resolve has not been shaken. I know this will end up being a good thing for Cheeks, I just know it deep in my heart. The getting there will challenge us, maybe more than anything has before. It will be hard, for sure. But the only thing harder than that would be not doing it.

 

9 thoughts on “Hope is a Good Thing

  1. Sometimes making a change or trying something new can be scary. But do you know what’s even scarier? Regret. Nothing is ever wrong. We learn from every step we take. Whatever you did today was a necessary step to get to tomorrow.

    Nothing is more beautiful and powerful than a smile that has struggled through the tears and the moments that are filled with hurt and pain during this journey. Smile because you’ve learned from it and gained the strength to rise above it. In the end, it’s not what you have been through that defines who you are; it’s how you got through it that has made you the person you are today, and that person is a caring, loving and nourishing MOTHER. I admire your strength.

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  2. I understand this challenging part of your world so well. You are not alone. I hope that things only get better and better as he becomes more able to identify and better express his feelings and concerns.

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  3. dear brave one, I’m honored “to have earned the right to hear your story”. (Brené Brown) And also honored to know you. The feelings that are swirling around you, Cheeks and your family as you walk on this newest path, are so raw that I can feel them through this screen. I’m drawn to your courage and your strength but mostly I’m right there by your side cheering you on, while simultaneously reaching out my hand and shoulder to you – AND holding space for you all in my heart. This is uncharted territory, but as I read what you’d written – knowing very little about autism – I agreed instinctively, intuitively that it’s the right thing for you to do. One reason it resonated for me is from my recent education at work (4.5 months) about seniors with alzheimer’s and dementia: while asd & alz/dem are very different medical conditions, at the core they have in common changes in the brain and being able to unlock the mysteries that inhibit communication. At work one thing jumped out at me from the alz/dem person-centered curriculum like a beacon of light: it’s a module entitled “So THAT’S what you were trying to tell me: ALL Behavior IS Communication” There are some very specific bhvrs that seniors have that can be partially decoded and even defused / diffused to help calm them when agitated or combative. Watching people in classes and on video talk about how they felt before they had this ability, this knowledge of their loved ones, is heartbreaking – in contrast with how they feel now, which is light, enlightened, and full of hope. It’s a long way of saying, I have hope for you all, and know you have hope too for this new way of doing things. My hope is that you can be able to decode the messages Evan is sending, about why he’s expressing fear, or anger, or self-harm, more than before, and that you’re providing him with another set of skills or tools to open another of the locked doors to connecting deeply with him. I love you, and send you fierce mama-bear love and hugs, to you and yours. xoxox Tami

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    1. So funny the ways our journeys coincide, Tami. “All behavior is communication” is a basic premise of the autism world and a phrase I am very familiar with, except I had never thought of it in the context of dementia. Thank you for your loving words of support. I didn’t think I could love David more than I already did but I now I do, because he brought me a friendship with you. xoxoxo

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  4. Because of Cheeks, I’ve read more. What’s not known and what is beginning to be known is both little and vast. Because I don’t live “in your world”…is it considered “regression” in how he is acting out? Is it a “usual” behavior or is it so individual and “it depends” is the answer? Is his aggression toward others too?

    Your posts help all of us learn. More, we too can try to react in public to what we observe in a way that is empathetic.

    Give my Ball of Smiles & the rest of those in your home love from us.

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    1. This is not a usual behavior for this methodology, but in some ways it is for Cheeks. I wouldn’t call it a true regression even, at least not unless it lasts longer than it has so far. I am hopeful that this is a temporary adjustment period. We’ve had those before, and while this one has reached a new level of intensity, it’s not unusual that it’s happening. He has not had aggression toward anyone other than his dad and myself, and it’s only when we are trying to get him to a safe space when he’s hurting himself. Thanks for reading this with the love I know you have for him.

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