Commune with me

My name is Jenn and I have a child with autism.  And while that doesn’t require a choral response as greeting: “Hi Jenn”, I mention it at the beginning as a point of reference for what will follow. Raising a child with autism grants me no license for specialness, especially in these years where the diagnosis of those on the spectrum is at an all time high. Nor does pasting that label onto my six-year-old son indicate a single thing that is better or worse, in relative terms, about him as a human being, or about parenting him. What it does offer, that word, is an opportunity to look at a variety of things that I hadn’t investigated before in raising neuro-typical children. When Ian  came along, there was already a magnificent stack of books in my house awaiting read through and referral as I learned the art of parenting. Emma’s arrival, two years after Ian,  also included an additional set of books and learning. It is lovely to have all that reference on the shelf  (and there is a magnitude of option available for parenting at all stages).  Maybe it’s altogether too much expert opinion, but all for all, it’s nice to have it around.

Andrew’s entrance into our lives required some dusting off of the old titles and the re-crack of book bindings as I attempted to recall the fine points of having an infant around once again. (It’s funny what you can forget.) Diligently, I turned pages and re-read passages, ultimately coming to the conclusion that these books on raising kids weren’t the books for raising this kid.  It would be years yet before I would have clear direction on exactly what to research and where to look for the expert opinion.  Andrew was nearly 4 years old when he was definitively diagnosed with Classic Autism Disorder. Up until that time I had the broad range parameters of  “delayed milestones”, “slow development”, “late talker”, “picky eater” as I conducted my deep (no kidding) google research on what could be going on with my son. I’ve done a lot of reading.  No, really A LOT of reading.  Along the way, I’ve been helped along by true experts in the field of child development.  It was with encouragement and support from  a dear friend who knows and works with children like Andrew that I aggressively pursued observation and achieved a diagnosis. Not that I was all that interested in a label for my son, quite the contrary is my actual attitude on that issue, but because in this world of words a standardized DIAGNOSIS means SERVICES. Without a WORD, there will be no funded support. Simple.

And so, we have a word.  A loaded word to be sure and its application to Andrew is singular. The same way its application to another child with the same diagnosis is unique to him/her and means something different to the family who supports them. Which is to say,  autism is a spectrum disorder–its symptoms and characteristics can present themselves in a wide variety of combinations, from mild to severe. Every case is unique. Every child is uniquely affected.  And if you know children at all, then this is an instinctive set of facts, it should come as no revelation or shock that we are unique and individual. Even when we belong to a category.

Our return to the USA has brought several challenges as we’ve settled  here in Missouri. One of the more vigorous tasks has been to set the wheels of a public school system in motion in regard to Andrew and his history. It is an intense process to identify your child on paper and grant leeway to professionals and educators to observe, document and assess him.  Add to our experience the interpretation of medical records, diagnoses, and educational records most of which required a literal translation from Dutch to English, and many for which long explanations were accepted as the difference in school systems was identified. Which is all to say that Andrew’s Kindergarten file is pushing phone book thickness.

But today, he has an IEP in place and in action for his Kindergarten year.  His Individualized Education Plan was brilliantly organized as his “team” designed goals in all aspects of his learning. I don’t know when I’ve ever been happier to sign a document.  As I sat with the (his) counselor, the (his) teachers, and the (his)speech and occupational therapists I was overwhelmed with the recognition that this was a group of individuals united in their effort and devotion to Drew.  He has a support network in place that we’ve heretofore never experienced. But the emotion is in the understanding that it’s not Andrew’s support network alone, it’s mine too. And Don’s. And Ian and Emma’s as well. I look at that extended benefit as cherry on top in this situation.  We’ve long been loved and supported by friends,  family, and friends who are our family. Now, we add to the mix the dedicated support of some folks who just may know what they’re talking about.

My name is Jenn. I have a child with autism.

And I have a village.

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11 thoughts on “Commune with me

  1. This post just delighted me. I’m SO happy the IEP went well and that you have a good, supportive plan in place.

    That will be such a relief.

    I mean, I really, really can’t express here how happy this post made me Jenn.

    Truly.

  2. Joelyn says:

    Jenn,
    Thank you for your beautiful description of a “word”. I have feared labeling Caleb with his learning disabilities and yet found such comfort in the funding and support that came with his “word”. Your honest insight into your life and the lives of your family is refreshing and uplifting. Love you.
    Jo

  3. How wonderful to finally have the village all of you need.

  4. Kimmy Sue says:

    I love living in our village. Your love is amazing! I’m so glad you have a wonderful team in place. You are loved.

  5. Jami says:

    Words fail to express how happy I am that you are happy. And I know that the only reason for your happiness is your certainty that Drew is getting the best of everything. But then again, he’s already got the best family.

    • Warren Parkin says:

      Jenn,

      I love this blog. You capture in a singular yet universal way the experience, frustration, and hope of nurturing a child with obstacles.

      Your writing is powerful. I’d like to use this next week in my Freshman Composition class. Just this week we have been studying labeling and the meaning of a word. The essays we’ve read have had more to do with racial slurs and ingroup code speaking. One had to do with defining the word “need.”

      Your essay would provide a great balance to the material.

      Thanks for writing this.

      PS Can’t remember. Did I tell you that I’ve worked with people with autism for more than 2 decades? Better said, my whole adult life?

  6. res says:

    I love that you have been able to successfully add to your village!! Makes my heart smile for your whole family!!!

  7. jodifur says:

    Oh Jen, I’m so glad you are having such a good experience.

    My own 4 year old is really struggling in school right now and we are fighting with the school for help, and it is nice to know that it may not be that way when we got to public school.

    Yeah Andrew and Yeah you.

  8. Goofball says:

    that is so fantastic! it’s heartwarming to know you have been able to find these people, the support and a good founded IEP. Perfect. I’m happy for Andrew!

  9. Teresa says:

    My dear, how I have missed your blog! As always, your writing inspires me! I am so happy you have found your village!

    • mojenn says:

      Thank you so much. I do hope you recognized the reference to YOU as the “dear friend” who helped us so much. And helps us, still. Love you.
      ~jenn

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