A Look Back

When Emma was first diagnosed Richard and I decided to start noting her progress in a little leather bound book we entitled – Emma’s Hope Book.  The idea was that it would be just that.  A book filled with hope.  After the first few months of making sporadic entries, we wrote in it very little.  We were immersed in Emma’s “boot camp” of 35 hours of ABA, with therapists coming and going, then there was the speech therapy and the occupational therapy as well as the homeopath, the cranial sacral therapist and the DAN doctor.  In addition, I was caring for Emma’s older brother Nic, who we had decided to keep out of nursery school, (even toyed with the idea of homeschooling both the children) before we knew of Emma’s diagnosis.

A few months ago I came upon the original Emma’s hope book and flipped through the 27 entries spanning the time of her diagnosis – 10/2004 – April/ 2010 when I began this blog.

The first entry was written by Richard in October, 2004.  He wrote:  “Emma said, “Peek-a-boo-I-see-you!”  Pointed to her eyes when I said, “no eyes.”  I said – “Bertie hit you with his tail” and she immediately grabbed his tail.”

In the beginning we looked for any sign of understanding or attempt to communicate, no matter how small.  While other two-year olds know well over two hundred words, Emma said very little.  It was difficult to gauge how many words she really knew, as days would go by with no words spoken at all, then other days she would say half a dozen words that she never repeated.  I now wonder that those words weren’t things she’d heard and was echoing back, but didn’t really know or understand.

In any case, the first Emma’s Hope Book never got off the ground.  It was suppose to be a document of hope, something we desperately wanted to feel, but often had in short supply.  We would hear of some new treatment, a diet, biomedical intervention, or therapy and would feel a surge of hope, only to feel that hope dwindle as the months wore on and she made little if any progress. When we learned of the stem cell treatments in Central America, we felt another surge of hope, which was when I began this blog.  It was intended to show her progress from the stem cell treatments.  By the third treatment, we still hoped stem cells would be the thing that threw Emma out of her “autism” and into our world of “normalcy.”  But whatever progress she’s made from the stem cell treatments is not something we can pinpoint or even know with any certainty.  They may have helped, but they just as easily may not have.  We never saw such a massive uptick that we were left without doubts as to their effectiveness.  This has been our experience with almost everything we’ve tried.  All the biomedical interventions, all the behavioral therapies, all of them have done very little.   Or perhaps it is more accurate to say – None of them have had a huge impact.

But, call us crazy, we keep trying to find ways to help her.  We keep looking.  We try to keep an open mind.  We try to keep our hope alive.  There are days when our hope falters, though usually it is just one of us who feels particularly glum and the other is able to infuse some hope into the conversation.  Every now and then we both feel a lack of hope and that is when we will remind each other to look back.  We look at how far she has come.  The one intervention that has made a huge difference is Emma’s literacy program.  We remind each other that just one year ago, Emma couldn’t form all the letters of the alphabet, now she is writing complex sentences, uses the past tense and is often able to use the correct pronoun in answering a question. She did not know what a math equation was, let alone able to solve one or write one.  We are often exhausted, but even through our exhaustion we are able to enjoy and appreciate Emma in all her Emmaness.   Just as she is.

Emma found this old Halloween Costume of Nic’s and put it on saying – “I’m a monster!”

For more on Emma’s journey through a childhood of autism, go to:   www.Emma’s Hope Book.com

4 responses to “A Look Back

  1. I wish I could say something that could help take the pain out of the words you wrote. It is so devastating to try and try various methods and really not see a huge impact from them. Not only do I not see a huge impact of progress, but in some areas I see things getting worse. Her tantrums are worse, because she is bigger and can cause more harm to herself , to property, to others. Yes, she is making progress in math and writing, but for me, things feel worse. Maybe it is because the older she gets, the more apparent her autism is, meaning the disparity between her and other children her age becomes more apparent the older she gets. At three, there were noticeable differences, but for some reason things felt more manageable. At 8, things seem more overwhelming and less hopeful lately. Emma wandered away for the first time yesterday from our place in Ann Arbor, which is a busy town being a university environment. She had never done that before. The police were called. I had only left her side for 20 seconds as I put away my neighbor’s dog that we are dog sitting. She was playing in puddles and then she was gone. I have never felt more petrified in my life, and I caught a glimpse of my future and wondered, will things just get worse, scarier as she gets older and bigger and more curious? I feel hopeless today. Then I read your blog, and I feel a little better. So thank you again, for your words. They help so much when I just want to curl up and give up. I won’t, I can’t….she is my life. I will keep trying. And when I am feeling hopeless, I will try and remember the progress she has made, the interventions that might have made a big impact but are hard to see objectively. Thank you again.

  2. Oh Kelly, that really is terrifying. And I know exactly what you mean regarding the widening discrepancy between when she was little and now as she gets older, the distance grows larger and seemingly more unmanageable. Sometimes the best any of us can do is just be honest about how we are feeling. Sometimes knowing that we aren’t alone with our fears, that others share them can dull them, if only a little. Sometimes, while we will never be able to take away the pain, knowing that we share it, somehow helps.
    This weekend was difficult, I felt especially sad for some reason. Like a low grade fever I can’t quite shake, it comes in waves. Just sadness. I took Em to the zoo yesterday because she kept insisting I take her, just the two of us. But the minute we left the house, she didn’t want so much to be with me as have me follow her from afar. Other parents were there with their children, talking and laughing and then there I was trying to engage Emma, trying to talk to her while she ignored me and scripted. We’ve done this trip dozens and dozens of times. She never tires of it, but I do, to be perfectly honest, I do. And then I feel badly that I do. Today I have to work and my mind is elsewhere. I had a conference call this morning, kept having to ask people to repeat themselves because I couldn’t concentrate on what they were saying. Some days are like this. I know I’ll get through them, but there isn’t a lot of joy.
    So when you wrote that you just wanted to curl up and give up – I actually said out loud – Oh God, me too! But as you said – we won’t. We can’t. And there’s a certain beauty in that. I’ve said this to Liz before (she’s the mom from Australia who comments on here with two children on the spectrum) – I find your words to be incredibly inspirational. Because you don’t give up – and that really becomes the point.

  3. Whenever your hope fires dwindlin, come to me for kindlin!

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