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A Gentler Hand

March 14, 2012

This is the email I felt compelled to write to Mary’s ABA team tonight after a particularly difficult day.

Warning: excessively long email, but I feel like I need you to understand this and I’m weirdly more comfortable writing than talking- probably my own little autism 😉 )

I am aware that I am a difficult mother to work with. I know it probably puzzles you why i ask you into my home to help my daughter and then seem to fight you at every turn when you start to work her just a little harder than I might. I do know that you are doing what you think is best for her. I know you think you are preparing her for school in the long run, where she will have to perform many “non-preferred” activities. I get that. Two older kids on the spectrum, both in “mainstream” classes, I get that. God knows I am trying to let you do your job, even though it may not always look that way.

Today, when she was crying so much at school, it cut me to my core. I know you might think you know what we’ve been through with this sweet baby girl, but you weren’t there through a lot of it. My approach with her is different than with my older kids. Because of what we’ve been through with her, I am much more focused on her present, because, quite frankly, it has been very difficult to consider her future.

I am willing to put her through the physical therapy, because it helps her right now. Mobility is huge to her. It engages her right now. She can explore her environment instead of just being pushed or carried through.

I am willing to put her through OT, because it helps her right now. It calms her sensory issues, and gives her a level of independence in terms of feeding herself and playing with toys. That helps her enjoy life right now.

Why is it so hard for me to put her through circle time, and force her to request every bite of food, and complete a non-preferred task, even though these are things that will be required of her in school? Because I have not before had the luxury of considering school for her.

Besides being told, from the age of 7 months that she likely has mitochondrial disease, last year we spent a solid 8 months living with the likelihood that she was dying. First it was liver cancer. Some crazy blood test results pointed to liver cancer, and when the doctors searched and searched and simply couldn’t find it, they did not seem at all relieved. When they discovered her low immune cell counts, 3 months later, that led to a new diagnosis. So, January and February of last year, we were told she had liver cancer. In March, while she was undergoing intensive feeding therapy because of a failure to thrive diagnosis, and after she had already lost and (thankfully) regained her ability to suck, we were told she had ataxia telangiectasia. (you can read a little about what that is here: http://en.wikipedia.org/wiki/Ataxia_telangiectasia

As you can see, she doesn’t fit exactly, but already presents with many of the symptoms listed. It was clear that if this was what she had, our time would be very limited.

We waited on the gene test so that we could get into the clinic at Johns Hopkins. We waited more than 10 weeks. We prepared ourselves. We discussed housing options for wheelchair accessibility. We babied her. We hugged her. And we cried. A lot.

It was in the midst of this grief that we started to pursue her sister’s autism diagnosis.

It wasn’t until last summer that I even allowed myself to consider the possibility of a future for her. I specifically remember a conversation with my mother in law on the phone, driving home from another neurology appointment, filled with hope, we started to talk about what she might want to be when she grows up. WHEN she grows up. You have no idea how powerful that seemingly innocent statement is.

This whole time, the main thing that was pointing the doctors away from mitochondrial disease was that she was making steady progress, with no “true neurological” regression. Then she lost her speech. The autism diagnosis was something of a relief- an explanation for that. Until the doctors started referring to the autism as a symptom instead of a diagnosis.

The not pointing thing is very concerning to me. These seizures, or whatever they are, are even more so. They point to a progression of disease, though that disease or syndrome is still unknown and therefore untreatable.

I am scared. Much more than I would like to admit. And I have become so familiar with the fear, that it grabs hold of me faster now. So when you tell me that she needs to work on non-preferred tasks because someday she’ll have to do that in school, part of me jumps with excitement at the casual assumption that she will go to school, but there’s a much bigger part of me that wants to scoop her up in my arms and scream, “what’s the bloody point of torturing her to get her good at something she may very well never have the chance to do?” I am constantly torn between two realities. I know that no one really knows how much time they have, and I know there are kids far worse off than my baby, but it’s a different kind of life when it’s your child and her future is so very unclear- something that (thankfully) few people ever have to understand. And, really, she’s only two. Maybe she doesn’t need to work so damned hard at every little thing. Maybe she doesn’t have to go to school at all right now. Heck, I didn’t go until I was 5.

I’m honestly not sure what my point is in all of this. I’ve been seriously considering pulling her out of school. It is nothing more than a social skills group to me at this point. There are so many- so, so many- days when I would love to just tell all the therapists to take a hike. I’ve got this. After all, these are my kids. But I have seen the progress made. I know it’s valuable. I want them to be independent. But I need a gentler hand with this one. If not for her, then for me. I know that might sound selfish. Probably very selfish. I am so pleased with the progress she is making on the iPad. That she has a means of communicating with us is great. At the same time, I am really not sure that circle time is all that important right now. I’m becoming less concerned with age appropriate (what does that really mean anyway?) and more concerned with her overall happiness.

I will try to let you do your jobs, but I need to know that you can tell when you are pushing her too hard. Whatever happened at school today constituted “too hard” in my book. It already appears to me that she is only happy about 20% of the time she is at school. And then to see her as distraught as she obviously was, and to hear you urging her to get up and complete her task seemed excessive to me. She is not a defiant child. She doesn’t have a manipulative bone in her body. She is overwhelmed, and I have never seen her as upset as she was at that time. Then, she was distraught and attached to me for the rest of the afternoon at home. I need to know that you can tell where to draw the line, and to draw it sooner with this child than with another.

I’d rather spend the time finger painting or pursuing other sensory needs and socializing in general, than focus on the “behaviors” that result from “non-preferred” tasks. I’d rather spend the time making her more skilled at making herself happy. If and when she does go to school, she will need to have these sensory skills down to soothe herself when she becomes overwhelmed. I am confident that by the time she gets to kindergarten she will figure out how to sit on her spot on the rug with minimal protest. It’s not a priority right now.

The neurologist sent me this article. I know I’ve joked about it in the past- perhaps a doctor shouldn’t be sending a mom such an article. That said, I hope you might take a minute to read it. Our future is uncertain- seems it always has been. But this mentality of a dragon mom is so much of how we still think of our parenting role with Mary. Because focusing on the future at the expense of the present in any way, is just not acceptable to us- because her future has never been taken for granted.

http://www.nytimes.com/2011/10/16/opinion/sunday/notes-from-a-dragon-mom.html?_r=3&scp=1&sq=dragon%20mom&st=cse

Thank you for humoring me.

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4 Comments leave one →
  1. March 14, 2012 4:05 am

    Tough situation but great you are sticking up for your child. You know her best!

  2. March 15, 2012 6:36 am

    I am an Aspie parent of an Aspie child who is more comfortable writing. I feel for your plight. I have been a mom for 17+ years and I have learned a bit. No one knows your child like you do. Therapists are people and people can be wrong, well-meaning sometimes, but wrong.
    People on the spectrum are people too and we are more than a diagnosis.
    Go with your heart. Talk to others. Get 2nd and 3rd opinions. I have yet to find anyone without ASD to truly know and understand ASD.
    Good luck. My best wishes to you and your family. You are not alone.

    • March 15, 2012 12:16 pm

      That’s just it. I know these therapists really think they are doing what’s best for my daughter, but sometimes I think they just don’t get it. They are so used to dealing with purely behavioral issues- and usually older kids, that they just assume her crying to be a classic tantrum. What’s kind of funny, is I know they read my email, but as of yet, the one therapist I’ve seen so far hasn’t talked to me about it, but started to shift course a little. Maybe it’s easier for everyone to write things out instead of talking out loud. 😉 We have “school” (really a toddler program for deaf kids) today, so we’ll see how it goes. Thanks so much for the support!

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