Use My Voice

Speaking up about the issues I can't get out of my head or heart.

What’s In A Name?

on June 20, 2012

Names are important to us as people. They are part of how we identify ourselves. Before each of our children were born my husband and I spent months deciding on names. Each of our children have a family name and a biblical name.  It wasn’t that easy though. The names had to be good names, based on people in our families that we actually wanted to name our children after. They had to be people from the Bible who were good and names had meanings that we liked. One of out favorite boy names was nixed because it meant dog.  Our last names are important to. They connect us to a larger group than just our immediate family.

There are other names that we use to identify ourselves and others as well. Names that give us an idea of what they do or more about who they are. “She is a doctor” or “He is a soccer player”. Then there are the other names, the ones that describe our differences or disabilities. These names are often ones that we try to avoid. I know because I have been there.

From the time my oldest child was 6 months old he was talking. He was putting sentences together shortly after his first birthday. By the age of two he could talk to you for an endless amount of time about every piece of construction equipment. He was happy and for the most part easy-going. He wasn’t a temper tantrum thrower. All in all he was really easy. Then around three differences started to show up.  He had a difficult time with independent skills, he was starting to show some social awkwardness, and yes at times got stuck in his own world.  He also, really, really, really, did not like loud noises, or when plans changed after they were made, and of course there were food issues. His teacher at the time recommended we take him to a developmental pediatrician. So we did and thus began our search for a new “name”.

What we got there would be played out over and over again for the next four years. It would go something like this, “Well, yea, he’s kind of quirky, but who isn’t?” or “Well, yea he has some autism like traits but his social skill are to good for it to be that”. At five we  received an ADHD  and possible visual processing disorder diagnosis, started occupational Therapy for a fine motor delay,  and started on medicine (that’s an entirely different post one day).  Our pediatrician and therapist agreed on a sensory processing disorder diagnosis at six.  Somewhere around six or seven we saw a neurologist which was my least favorite visit of all. This time my child got called quirky and odd with him listening.  So I sat on the side of the road with my child that afternoon as he cried and asked what quirky meant and why we had to see so many doctors.  At that moment I knew it was time to end our quest for a name for whatever my child’s disabilities were.

So for the next few years we did our best. Two years of occupational therapy, six months of physical therapy, so on and so on. We learned about sensory issues.  We home schooled because we felt like we best understood his needs. He made great progress. He learned how to pump a swing, ride a bike (not well but he can do it), and he developed  a passion for history, science, and the environment. When he was seven years old he requested we get “An Inconvenient Truth” from Netflix and watched it multiple times. He is really smart.  However, there are gaps. Really big gaps. Gaps that are hard to explain when you don’t have a name that covers all of your child’s disabilities. Yes, I know that plenty of kids with ADHD function just fine in school. I know sensory issues are hard to understand. No, I can’t explain to you why he loves to learn and loves to be read to but can only read at a first grade level. At times over the years I found myself almost envious of parents who had a name for what their child’s disabilities were. I know most of these parents really have it much worse than we do but sometime I wish I had one or two-word answer to put on the form under “any special needs”.

We started a new kind of therapy tutoring combination this winter. We received a new unofficial diagnosis of dyslexia. This made things a little easier to be able to say the camp leaders or church teachers, “He has dyslexia. He will need some help with reading and writing”.  Today I met with the wonderful woman who heads the school where he has been going. We went through his end of the year test. We talked about his strengths and the areas he struggles with. We talked about the gaps.  At one point she looked at me and said, “I really feel like he has a form of high functioning autism”.  I didn’t know if I wanted to beat my head into the table or hug her, or both.

So, we are getting ready to start on another round of name searching.  Not just for the sake of having a name but so that we are able to get him the best help we can.  He’s older now and understands more. He knows he’s different. He also knows how amazing he is.  I covet your prayers. I pray we find the right doctors this time. I pray that the process is quick. I pray that through all of this we are able to show him that whatever the outcome is that who he is so much more than the name of his disability.


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