Tuesday, September 8, 2015

No Man’s Land

This post has been hard for me to write.  I’ve rewritten it over and over this weekend.  There’s so much I want to tell you, but it’s so difficult to put into words.  Lately my heart has been overflowing with gratitude for the opportunities that God has presented for my little boy.  He has found a school where he is learning and thriving.  He has family and friends who love him dearly, and he got to spend precious time with loved ones this summer.  He is content and happy.

I read through Ben’s binder this weekend.  Every special needs parent has the binder.  It is filled with meeting notes, assessment data, IEPs, and procedural safeguards upon procedural safeguards.  I dug out the binder because tomorrow Ben’s team will sit down and write his service plan.  This plan will replace his IEP for as long as he is enrolled in private school.   As I sifted through the psychological reports and read over the evaluator’s notes, I thought about the little boy who spoke in one-word sentences, who did not reciprocate affection, and who did not play with his peers.  I thought about how far he has come during these past few years.  And yet, while we have left some challenges behind us, there is still so much work to do.

My son has a hidden disability.  It doesn’t come with obvious markers, like a wheelchair or a cane.  And yet, his differences are there and impact the way he interacts with his world.

Ben has sensory processing disorder or SPD.   This means that the information from the outside world doesn’t get filtered in the usual way by his brain.  Instead, the information from outside comes rushing in- or it comes at him in a jumbled way, much like a muffled radio signal.  This becomes most pronounced when his environment is unpredictable or when he doesn’t have the opportunity to decompress and recharge.  His sensory processing disorder is more disabling for him than his speech and language delays.  It is more disabling even than his autism.  And yet, some days it is not disabling for him at all.

I have some friends who only know my son from his smiling Facebook photos and my status updates that describe his antics.  Sometimes they’ll ask me about how my son is doing.  Often, they have read my blog and want to understand more about sensory processing or autism, because they are teachers themselves.  I’ll often get asked, “I know he has sensory challenges and autism, but it’s not that severe, right?”  The answer to the question is complex.  On the surface, Ben looks and typically acts just like any “regular” kid.  In the right environment with proper supports, he does not “stand out” that much from other children.  If you were to look over at our table at Olive Garden, you’d see a kid happily engrossed in coloring or playing on his ipad.  When we go out these days to the supermarket or even to the theater, we rarely attract attention.  But, if Ben gets put in an unstable environment and we don’t pay attention to his cues, it all can escalate quickly.
There are days when Ben doesn’t require any additional supports at home or at school, and then there are days when he needs all of them.

Ben is a talkative, imaginative little boy, and so it is easy for others to forget, or not even realize, the sensory challenges that are always lurking in the background.  I am forever reading his face, just as a meteorologist searches the sky for signs of an oncoming storm.

And so we live in no man’s land.
We walk the thin invisible line between the general population and the world of special needs.

Example 1:  Ben’s new school has an indoor gym.  These are rare in Florida, because kids can have PE outside all year round using open-air pavilions or grassy fields.  Ben loves the new gym but is bothered by the “loud, echoey noises”.  When he told me this, my first reaction was to get him noise cancelling headphones.  His teacher was on board with the plan.  My husband, however, pointed out that the headphones could make him a potential target for teasing at this critical time when he is trying to establish friends at his new school.  I see my husband’s point but I also don’t want my son to have to “tough out” the sounds in the gym. 

Example 2:  This weekend Ben will start playing baseball.  We decided to let him play on the Miracle League, an adaptive baseball league for children with disabilities.  It is a wonderful organization.  Every player is assigned a buddy to assist them on the field.  The field itself has been adapted to accommodate wheelchairs and walkers.  Every player gets to hit ball and fully experience the game.  I am so grateful that such a league exists and so excited for my son to have the chance to play, but secretly I feel guilty.  I know that there are many different forms of disabilities, but I worry that because my sons is a hidden one, others may question his spot on the team.  What will the parents of the child in the wheelchair think when they see my able-bodied son running the bases when theirs must wheel around with assistance?  I know my worries are unfounded, but they creep into my mind anyway.

And so we walk the thin tightrope- struggling to balance ourselves between these two worlds.  I don’t want to "borrow from tomorrow’s sunshine" with my worries, but I can’t help but look towards the future and try to anticipate the next hurdles, even while I give thanks and celebrate the successes and the accomplishments along the way.

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!


  1. The invisible disability. I completely understand, as it is the same in our house. My close family "gets it", my extended family does not and my friends just don't see it. Great post. Thanks for sharing.

    1. It certainly is a hard thing to explain to others who do not interact often with him. It's good to hear that it's not just me that feels this way, though I'm still searching for ways to explain it so others can understand. Luckily his support group gets it, and I'm glad to hear that your close family understands also.

  2. What a beautiful, eloquent, balanced post.
    As a mom on binder THREE -- my guy just started 8th, and is about to have his three year eval, heaven help me -- I have so much to learn from you.
    Thanks for this post, and for shining a light on the differences people may not see - and that, yes, may vary with context.

    1. Binder three...oh my! I'm planning to begin Binder 2 this year and am anticipating much less paperwork since he has entered the private realm. We have so much to learn from each other- I value your insights so much as well! So glad we have this blogging circle of support.

  3. Great post... so hard when the children are right on that line. My older son is like that, but my young son displays his autism with pride :) This statement: "if Ben gets put in an unstable environment and we don’t pay attention to his cues, it all can escalate quickly." That just sums it all up for my younger son. It's all about reading the cues before the escalation--it's exhausting sometimes, but it is also so wonderful to be that connected with our kids. Great post!

    1. It IS great to be that connected with our kids, so true! And so interesting how each child on the spectrum can be so different. Thanks for your insights, as always!

  4. Oh yes. I completely understand how my kiddo looks totally normal but there are a lot of other things going on. And people who know us very well are still sometimes surprised when they pop up because they really don't see what's going on underneath. Still waters run deep... so do waters that NEVER stop moving.

    1. Understanding SPD through my child has made me so much more understanding when it comes to the children I see at school and out in the world. It makes me realize that everyone has something going on- and I have so much more acceptance as a result. I've also learned to respect the powerful role that the environment can play in all of it. It truly is the make or break factor for my kiddo. Thanks, as always, for being our amazing blog hop hostess!


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