our journey of hope and healing through autism
I’ve noticed a huge difference in the way people respond when a friend or acquaintance has an acute medical crisis, rather than a chronic one. I remember a time when a friend’s child was sick and in the hospital, and she recounted that they were overwhelmed with love, support, meals, and offers of help.
This contrasted pretty starkly to when Hannah was diagnosed. Most people in our community in Calgary, if they said anything at all, it was in response to a video I made sharing Hannah’s strengths, challenges, and diagnosis. Only a handful of friends have consistently asked about Hannah (and I love them all the more for it, and I think/hope they know who they are). I’ve been surprised sometimes at how many people have acted like nothing has changed, when Hannah’s autism has turned my world on it’s head.
I’ve spent a lot of time thinking about this. I suspect many people don’t know what to say, so they don’t say anything. I can understand that. I’ve often felt the weight of not knowing the right words to lift or encourage someone who is struggling. Perhaps there were more people who offered help, but I didn’t hear their offers, because I didn’t know how they could help. Maybe offers of “let me know if there’s anything I can do” have always sounded like a hollow offer, and my mind didn’t register them as true offers. I’d like to think that it wasn’t just that people were too busy to bother. I really don’t know. I do know that largely, I felt so alone. Sometimes, though less often now, I still feel alone.
I was watching a video, where a fellow mom with an child with autism expressed something that’s jangled around in my heart.
“I don’t mean to diminish chronic illness or terminal illness on any level when I say…It’s not like “Okay, we’re going to go get Noah his chemotherapy, and then we’re going to go do this (with one of your other children)” if he were a child that had cancer. It can’t fit. Autism doesn’t fit (in a normal lifestyle) anywhere, it doesn’t have an end date, because we don’t know if he will get better. We’re putting all of our hope, and our intellect, and our finances in that basket, saying that he will. I don’t mean to infer that a child who is getting chemotherapy is or isn’t getting better. I just make the analogy that with a child who has cancer, there is a rallying around in the community of “Oh, gosh, this kid is sick, let’s bring some casseroles.” There’s this acknowledgement that something awful has happened to that family, and they are going through something. We are always going through something, very much like of a family who has a child who has cancer, but it’s more like “Well, you need to accept it.” That’s the societal perspective- “You just need to accept it and move on.” (For us) there’s no accepting, there’s treating and getting him better.”
Lisa Goes (mom of a 7 year old severely impacted by autism)
When Hannah received her diagnosis, some of my friends asked if I was glad to know that is was autism that was causing her problems. I wondered if they would have asked that if Hannah had been diagnosed with an ailment like cancer, that is different, yet poses a similar threat to a child’s long term prospects of having a full and enjoyable life. “Happy”? I was devastated, but determined to give everything I had to helping her have the best quality of life possible.
I’m a very private person. I (mostly) grieve in private. (This blog seems to contradict that, but it definitely feels “safer” than falling apart face-to-face. Originally, I actually started the blog to give friends and family a way to support me. I bear my heart here, and I’ve been surprised by some of the people who do read the blog (like former teachers of Hannah’s), and have been surprised by some who I thought would read, but don’t appear to. ) The whole year that Hannah was on the wait list for assessment, things were desperately difficult. I was surprised by the people who said nothing when I shared the news of her diagnosis, who still say nothing. Hannah’s therapies and treatments consume the better part of my time, energy and intellectual efforts. For good or ill, they have become my hobby, my passion, and a large part of who I am. They have brought my daughter back to me, and given her prospects of a bright future.
I’ve occasionally wondered if part of this is that I try hard to seem calm and in control. Two months ago, I was having a rough time (in the aftermath of the March challenges I blogged about here). An acquaintance from church caught me at a vulnerable moment, and I shared how difficult things were feeling. She was really surprised, and shared that she’d “thought that things were better now” and that I “seem so composed” that she hadn’t thought to be concerned about me.
Deep inside, I’ve always based a good deal of my self worth on how competent I feel I am at the tasks I’m undertaking. Perhaps it is a bit of a curse to seem competent. If you’ve made it to the end of this post, I ‘d love your thought on this. Have I repelled your offers of help, or seemed like “No worries- I’ve got this one in the bag”?
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our journey of hope and healing through autism