Midthun Pic 1

Off The Charts

Written by Audrey Midthun, Mother, Mecklenburg County

There is a scale of measurement to gauge how a child is developing.  If you don’t know this before your children are born, you quickly learn it once they arrive.  It starts minutes after birth with the APGAR test.  How quickly are they responding to outside stimuli, and are they responding in the correct ways?  Then, at every well baby visit for the next five years, you are handed a questionnaire to determine how your children are progressing.  Are they hitting their milestones?  For most parents, these tests and questionnaires are nothing more than a group of questions for them to reflect on how wonderfully perfect their child is.  And to make sure you fully understand the awesomeness of your child, your doctor will even graph it out for you and make sure you know the exact percentile in which he falls compared to other children his age.  For most parents, coming to terms with their child’s growth and development is sort of a natural flow of information and an opportunity to brag for a moment on their baby.  

I understand those parents because I was one with my first child.  She was perfect and smart and hit all her milestones right on time.  I never lacked for things to make me feel like I had the world on a string where my daughter was concerned.  But having my son changed my perspective on this process.  In the beginning, the questionnaires were presented as a formality.  “Oh, it’s fine that he hasn’t done that yet, he’s got time.”  But each time I had to fill them out, it was more painful than the last, until I refused to do them all together.  We were not ready to face the idea that there could possibly be something wrong with our son.  But when he was 17 months old and still was not talking, we were ready to go as far as saying he was speech delayed.  But that was it.  That was all we could swallow at that time.  We arranged for EI to come and evaluate our situation.  When we sat before our service coordinator, she could see we were in a fragile state of denial.  We just weren’t ready for anything more than what we had already told ourselves was the problem.  In our minds, we would get some speech therapy, our son would learn to talk, and we would be on our merry way to being able to graph out how great our kid was.  No one would have to know our dirty little secret.  But over time, we had to not only peel back the layers of our son, but also of our denial.

With each therapy session, our team addressed issues of concern.  They eased us into the next steps which would address his “sensory processing disorder.”  Ok, we can get on board with this new term.  It made sense to us.  Our son was doing things that made it difficult for us to go out into the real world.  So, our team discussed the option of occupational therapy with us.  We agreed that anything that would help our family not be trapped in our house any longer was a good thing.  So, we added OT to our weekly regimen of therapy.  With a little bit of time, we began to see some results in his development.  I had gotten so used to hours of therapy every week that it started to seem normal.  It was only when I was around other children my son’s age that I would find myself breathing deeply and trying to squash my fears and thoughts of “How can this be happening?”  Our EI team knew I was afraid.  They learned how to read my reactions to our conversations.  They knew I could only take little bits at a time.  Too much would cripple me with devastating thoughts about what my child’s future would look like.  They were able to work around my anxiety and still do what needed to be done for my sweet boy to keep him and our family moving in the right direction.  So when the time came to pull back the curtain and reveal the truth, the ground work was set and we were ready.

Over time, the more people we added, the more information we received.  The more information we received, the better equipped we were to deal with the root of the problem.  It wasn’t until two years after my son aged out of the early intervention program that we sought out a specialized doctor to face the reality that we had been running from since our son was a baby.  Our son, the boy we dreamed about, the one that we had plans for, has autism.  It had come up a few times, but because we were not forced into a diagnosis before we were ready, or before it was necessary, our family was able to be a part of a team that helped us put down a solid foundation on which we have built huge pillars of success, long after our son aged out of the early intervention program.  A formal diagnosis is not always necessary, but having people that see the big picture, even when the parents can’t, is crucial – not only for the success of the child, but for the health and wellbeing of the entire family.

Our son is now six and a half, and I am so proud of all that he has overcome in his short little life.  He becomes more and more like his peers every day.  His speech and sensory dysfunction are almost unrecognizable to people who don’t know him.  He is getting ready to finish up his kindergarten year with test scores that are well above his grade level.  To say that he is amazing is selling him short.  If I were to graph his success, he would be off the charts.

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4 Responses to Off The Charts

  1. John May 22, 2014 at 9:03 am #

    Audrey…thank you so much for your personal and insightful blog. You are off the charts! I’m particularly interested in your work with your EI team and how sensitive you say they were to both your need and readiness for certain kinds of information. It sounds like your son’s diagnosis of autism came well after your involvement in EI and I am wondering if it was ever mentioned by your EI team. One of the current streams of thought being promoted to professionals is that we need to “just say it” when we have a suspicion of autism. It sounds like you are saying that in your case that might not have worked well for you and your family and I am just wondering as you reflect back on that is there is any information that you wish your EI team had shared or perhaps shared with you in a different way? Thanks again for putting your story out there.

    • Audrey May 22, 2014 at 11:37 am #

      John- Thank you for your kind words. I have come a long way in this journey, that’s for sure. My husband and I feared that our son had Autism before we contacted EI. But it was something that we could not, at the time, comprehend. To us, it couldn’t be true. We did everything right. We circled around the idea of Autism with our team several time but everytime it came up we were able to place his behaviors under a “diagnosis” that was less life altering. By doing that our team was able to work on his deficits with out breaking my heart. I just wasn’t ready. If someone would have “just said it” I would have eventually come to grips with it, becasue I would have done ANYTHING if it meant that my son had a chance at a normal life. But it would have been much more painful than it was by me seeking out a diagnosis on my own. Even at that point, two years later, when we went to the neurologist knowing that they were going to tell us that he had Autism, I left that office feeling like I had just been punched in the gut. It took me several days to feel settled with the diagnosis. I can’t imagine what that would have been like had someone forced me into it. For my family not forcing something that was not nocessary at the time was such a blessing. I am grateful for all who helped us along the way. Our service coordinator was the very best person for our case and I continue to be blessed by her friendship and love for my family.

      • John May 22, 2014 at 11:51 am #

        Audrey, your response confirms how we try to approach sharing information with families. It is tricky – what families want to know at what point in time varies from one family to another. We try as best as we can to pace information in tune with families readiness to hear information. This is not to say that we try to be the ultimate judge of that or that we deliberately withhold information but we try to position ourselves to help families ask questions and understand information on their timeline, not ours. One size doesn’t fit all as your story shows.

  2. Kesha May 22, 2014 at 9:29 am #

    Thank you for sharing your personal story and journey. The words you wrote are not only touching, but powerful. My hope is that through your honesty and reflection, other families may have a similar breakthrough in their journey in addition to feeling inspired to begin looking for/at the “big picture, not only for the success of the child, but for the health and wellbeing of the entire family.”

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