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Tuesday, June 10, 2014

How A Mom's Hunch Turned Into A Diagnosis of A Brand-New Disorder

From the HuffPost Parents Blog

By Catherine Pearson
June 6, 2014

"Her mother says Eve has made 'such tremendous progress' since her diagnosis..."

As part of Speak Up for Kids, an initiative led by the Child Mind Institute to provide the public with information about children's mental health, The Huffington Post is running a series of stories about families whose children have been diagnosed with mental health conditions.

Here, in her own words, Christine, 39, whose background is in special education, talks about getting help for her 4-year-old daughter, Eve, who has developmental coordination and social communication disorders.

Her mother says Eve has made "such tremendous progress"
since her diagnosis.

An Early Hunch

At the risk of sounding melodramatic, I noticed signs with Eve from the day she was born. She was just very aware and alert. I always pictured newborns as sleeping, but her eyes were wide open from the day she was born. If she was already sleeping, it was very hard to transition her to a crib or bed -- and she had difficulty feeding. So even from a very teeny, tiny age, there were little things that sent out mini red flags to me.

As Eve grew through infanthood and toddlerhood, the problems continued to manifest themselves in similar ways (she still had trouble feeding and was very sensitive to light and sound and had difficulty sleeping because of those things).

But she also just showed difficulty processing information. In infancy, babies put things in their mouths during teething, but that went on way too long with Eve -- it was like she was constantly seeking oral input. It was as though she had to experience objects orally -- if she saw an interesting texture, like a leather strap or chain link, she had to put it in her mouth.

She would also tire easily and get overwhelmed in busy environments. So while a lot of kids enjoy a carousel at an amusement park, she might scream or pull her hair.

My husband, Jason, and I are very open, and I talked about it with him and my mother, but as open and sharing as I tend to be, I also kept a lot buried -- an internal hunch. I knew deep down that something was off.

Seeking Answers

By the time Eve was 3, I knew we had to get her evaluated. The little things that seemed kind of "cute" or like baby behavior weren't going away. She had trouble relating with her peers. She had trouble making conversation. Of course, you don't expect to have mind-blowing conversation with a 3-year-old, but I noticed that her peers could just do things she couldn't.

At her little gymnastics class, she had difficulty running. She would look to the side and her gait was really tiny. And her peers would talk to me more than she was.

Even though I'd had a hunch for a while, the decision to get Eve evaluated was agonizing. It was one of the most difficult things I've ever done -- I could just feel it, emotionally, in my bones.

I reached out to the headmaster of the Montessori school Eve attends, and she suggested the Child Mind Institute.

So logistically, it wasn't difficult for us to get her a diagnosis, but emotionally, as a parent, it was really hard.

We did about two or three visits to CMI for testing and evaluation. I had thought Eve might be on the autism spectrum, but as it turned out, she wasn't. Eve got a diagnosis of developmental coordination disorder and social communication disorder, which are both kind of what they sound like.

She has trouble with coordination -- little fine motor all the way up to the gross motor movements, like running and jumping. Social communication disorder is a brand-new diagnosis in the latest DSM [Diagnostic and Statistical Manual of Mental Disorders]. She has a lot of difficulty with social pragmatics.

Cognitively, she's very smart -- she tested at a 6-year-old's level -- and has a lot more going on in her head than she can verbally express, so she repeats herself a lot and can have a really hard time relating to other people. The diagnosis immediately made sense to me.

I had already requested that Eve receive occupational and speech therapy three times per week at her Montessori school and she's still going three times a week, but now the goals are much more targeted.

Moving Forward

I don't explain any of this to her [yet]. I'm not shy about it, and when the time comes, I'll try and explain things to her as thoughtfully and delicately as possible. What's really wonderful now is that she's at that tender age where, when the occupational therapist comes to the door, all of the children run to her because they think occupational therapy is so much fun!

At that age, there's no judgment -- she's in this protected bubble of early childhood, and her school is so warm and welcoming. I wish I could protect her in that bubble for as long as possible, but I know it's not possible.

Eve still gets frustrated really easily because there's so much going on in that little brain that she can't bring to life and express, so every day can feel like a battle. School is really hard for her, not because of the academics but because she has trouble sitting still and holding a pencil. It takes all of her effort to just sit down and be still. But we're just trying to take it day to day and moment to moment.

And I've already seen such tremendous progress in her. When Eve started school last fall, she couldn't always chew and swallow her food and now she can. She's doing more age-appropriate things. We're very slowly closing the gap, and I'm hopeful we'll continue to, but I'm also really learning to accept her for who she is and meet her where she is. That can be heart-wrenching sometimes, but I hang on to the growth she's experienced and hold on to hope for the future.

I want Eve to be who she is. I think in some ways, her disabilities are a gift. She is very aware of her surroundings, and she is very sensitive to other people, colors and artwork. I hope she hangs on to that into adulthood. We just have to help her harness her strengths.

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