coming out about sensory processing disorder (SPD)

There are a few aspects of our family that I have intentionally chosen not to blog about, particularly things that are specific to one of the kids.  I’ve decided to open up, just briefly, about the fact that Jafta has sensory processing disorder (SPD).  I’m revealing this for two reasons.  First, I have a feeling that other adoptive families have children struggling with sensory issues and could benefit from our story.  But also, I want to talk about a book I’ve just contributed to, and there is really no way to talk about it without disclosure. I’m pretty certain this will be a temporary post that I delete in a few months, because it’s not really something I want “out there” in the archives of my blogs.  For me, talking about SPD in a book targeted for families dealing with SPD feels more comfortable than putting it out there on the internet.  So, if you are interested in reading a fairly detailed account of our family’s journey with sensory processing disorder (sometimes called sensory integration disorder), I would encourage you to check out the new book Sensational Journeys: 48 Personal Stories of Sensory Processing Disorder

This book has been so helpful for me already, and the day the preview copy arrived I stayed up way too late reading the accounts of other families and wishing that I had heard these stories five years ago.  Here is an excerpt of our story:

As Jafta grew, his sensory seeking became more pronounced. He was a crasher, a banger, and a hugger. He loved to run into our arms, or have us smoosh him into the sofa. He had trouble with peers because he assumed that others would want the same brutish affection that he craved. He loved to stand on toys just to experience the feeling on his feet. He excelled at gross motor activities, learning to ride his bike and scooter at an early age. Still, we had no idea that these could be symptoms of Sensory Processing Disorder.

I was actually familiar with SPD, because a close friend had a daughter with the diagnosis. But where Jafta was a sensory seeker, her daughter was a sensory avoider. She couldn’t stand the feel of sand on her feet, or the texture of most foods, or the feeling of rough fabric on her skin. On the converse, Jafta seemed to prefer these things. Never in a million years did I think he could have the same disorder, because he seemed to be the opposite of the only child I knew with SPD.

I go into specific detail in the book about our long journey to diagnosis, but I will give the short version here.  Jafta came into our care when he was six months old.  He lived in two different placements prior to coming to us.  When Jafta was turning two, I was beginning to have real concerns about his development.  He had a hard time making eye contact at close range.  He was always crashing into things, touching things, invading the space of others, etc.  He couldn’t point to objects yet and his speech was delayed.  Having little knowledge about attachment issues and even less information about SPD, my first concern was autism.  I had him evaluated and we got him into Early Intervention.  This was very helpful for his development.  He had occupational therapy where they addressed his fine motor and sensory issues, and speech therapy too.  He went 3x a week for free, and I saw major improvement.  But still,  I spent so much time fretting that he had autism.  I was scared for his future and what all of this meant. I was in full grief and panic mode, and that anxiety made it hard for me to see his social strengths that conflicted with an autism diagnosis.

Now that he’s six and we’ve been through a slew of testing, I know that my early fears of autism were wrong, although he does have sensory motor issues that accounted for the late pointing and speech.  (Speech is a fine-motor issue . . . who knew?)   But I spent years worrying about it because no one had ever explained to me the connection between adoption and sensory integration, or that sensory issues can lead to late milestones and delays that are not related to cognitive functioning.  Many adopted children have one or more risk factors for sensory dysfunction.  Prenatal drug exposure, early neglect or lack of stimulation, trauma, lack of attachment . . . all of these things effect the way the brain develops, and can lead to sensory processing issues.  These sensory processing issues often mimic other disorders, and can have parents (and even professionals) coming to the wrong conclusions.

Jafta is now extremely social, his speech issues have resolved, and he does well in school both socially and academically.  He does not have an IEP and he likes going to school.  The teacher does make accommodations for his activity level, and he struggles with handwriting, but other than that he is all caught up with his milestones and concerns about developmental delays are a distant memory.  He’s bright and friendly, full of compassion and curiosity.

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I've kind of given over to the labels when working with doctors and teachers because it helps them conceptualize his behavior and treatment.  So . . . clinically, he has the sensory-seeking type of Sensory Processing Disorder.  While I accept the labels for the services they give him, in my mind, he is just Jafta, who is a quirky kid who needs a bit more redirection that most.  I don't talk about the "diagnosis" he's been given with any of my friends and family.  I'm sure they can see that he's active and touchy, but the labels don't really serve a purpose there.  My experience has been that when I told friends, they started to look for symptoms, too.  “Oh, yes, NOW I see what you mean.  Look at what he’s doing right now.”  I don’t want that for him.  He often appears to others like a child who has ADHD because of his activity level, but we have ruled that out as well.  Again, SPD often mimics other disorders.

We’ve also chosen not to seek a lot of therapeutic services over the past few years.  Insurance rarely covers treatment for SPD.  Jafta’s insurance covers nothing.  We have found that making sure his day is full of sensory input (biking, running, trampoline, and wrestling) is just as effective as a session of OT. 

I don’t talk to Jafta about SPD.  I only talk about behaviors.  He’s well acquainted with redirections like “watch your body boundaries” or “calm your body down” but I never want him to feel labeled or to feel like he can’t reach his potential because of SPD.  I believe that as he grows and his impulse control matures, that his symptoms will decrease.  I’ve already seen this happening.  I’m sure there will be a time when talking to him about SPD is appropriate, but I think that’s a long way off.  
 
All that to say, adopted children seem to confound the rules when it comes to these neurological diagnoses, and what it appears to be may not be the whole story.   If you have an adopted child who is not meeting milestones, be sure to educate yourself on sensory processing disorder and be ready to educate the professionals as well. 


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