our journey of hope and healing through autism

Acute vs Chronic Crises and the Curse of Seeming Competent

Captured by Becky Photography (33 of 51)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”?

Captured by Becky Photography (33 of 51)


5 comments on “Acute vs Chronic Crises and the Curse of Seeming Competent

  1. Jenny
    June 19, 2013

    I don’t know that I have any answers. I think most of us try to appear competent, even when we don’t feel that way inside. Not being near you, I’ve felt like there isn’t a lot I can do to help other than pray for you and love all of you. But if there are specific things I can do that would help, I would love to know what they are. As a RS President, I’ve pondered some similar questions….but from the opposite perspective. There are people in my ward who are going through some very difficult, long term challenges. And it is hard to know how to help. It is easy to arrange meals for someone who just had a baby or whose child is having a surgery or something like that. But it is harder to help the family whose father/husband is slowly dying from MS. I try to visit and listen and send notes of encouragement when I can…but it is hard to know whether going to visit and listening helps or just takes more of her time when she is already trying to support her family, spend time with her children and grandchild and husband. I think situations like this are a good example of why visiting teaching can be so important…but unfortunately, so many people don’t catch the vision of its importance and so some of the people that I know need visiting teachers don’t have their visiting teachers come regularly (which is why we’re working on redoing visiting teaching.) I think our lives have become increasingly busy, all of our lives, and so we don’t always take the time to help others, especially when we aren’t sure what to say or how to help. I also think we sometimes tell ourselves that it isn’t our responsibility to help by saying something along the lines of “well, my family is my most important responsibility and I’m spending my energy and time there, which is what I’m supposed to do, so it’s okay if I don’t reach out right now. I’ll help/serve others more when I get older.” I’ve had thoughts like that before. And I’ve had others say things along those lines to me. And while I think there is some truth in thatline of thought, I think there is also error. I’m learning that my service to others blesses my life and my children’s lives and that if I want them to grow up and be willing to serve others then I need to be setting that example while they are young. I’m learning that as Elder Packer spoke about in Oct. 2012 conference, we are all part of the beehive of the church…and each of our contributions (through callings but also through small acts of kindness and service) is essential. I also know that most of us just don’t really “get it”…we don’t really understand what you are going through, because we haven’t experienced it ourselves. At the same time, I don’t think that should limit our compassion or friendship. And I think that you are doing a lot of good through the writing of this blog. I think there are many people that don’t realize that there may be help or even cures for autism spectrum disorders. I think sharing what is working for you and the science behind it is an amazing gift you are sharing with others. Plus, it does give others a window into what you are feeling and experiencing. I hope you know how amazing you are! I love you so much and we are all so, so excited to have you come. I’m going to email you some ideas of places to visit in the next couple of days. Love you!!

  2. Big Ganga Photography
    June 19, 2013

    Societal empathy and/or sympathy towards people with physical illnesses is understandable.We are tactile creatures. It is simple, even natural, for us to relate to such conditions.

    Neurological disorders have always been surrounded by the the aura of stigma. Behaviors that do not constitute the norm, may cause an involuntary recoil in many people. More often than not their actions are involuntary. They are not even aware they are “raising their eyebrows”, as it were.

    I see this on a daily basis. As I walk in to a supermarket with my son on a harness and his subsequent, babbling conversation with a can of soup. The stares and muffled comments commence. I feel competent, in my non reaction to their reaction.

    Competency, to a degree, is subjective. Acceptance, is key. Either personal or in society as a whole. The former we can control to degree, the latter well…

    As parent’s of Autistic children It’s not an easy path we are on. There are few markers and road signs. Yet, we do have a unique perspective and the power to educate through our experience.

    Good luck

    • holdingtomorrow
      July 10, 2013

      I’ve been thinking a lot about the “involuntary recoil” that you mentioned. So true. It makes sense, and like you said, it is involuntary. I guess it makes me appreciate all the more those few who’ve gone out of their way to be kind to my daughter and our family.
      I visited your blog, and your son is so handsome! Thank you for taking the time to share your thoughts on my blog. All the best, Becky

  3. Mike Kapel
    June 19, 2013

    You are one of the most amazing persons that I know. I used to encourage you to be a finisher. I think you have learned how to keep your shoulder to the wheel and to press forward and onward. I am proud of you. Honored that I have the privilege of calling you daughter.” I feel the same about all 3 of your children. I wish that I could be there, and I know that your mom does too. I think that all too often people don’t know what to say or how to help, and don’t even think to ask. It is like, the expression of “How are you?” Does the person asking really want to know?? Maybe the standard greeting would be more accurate as, “It is good to see you.”
    We are planning on moving to Utah in 4 years. Then maybe your family could stay with us awhile in the summer. Or even when the kids are able, they could come and stay with grandma and grandpa while going to an EFY at BYU or something. I LOVE you and send BIG HUGS.

  4. Pingback: I’m not okay… and it’s okay. | holdingtomorrow

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This entry was posted on June 18, 2013 by in autism, grieving, hard things.
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