A guaranteed way that we get a blown away look from strangers is when Jackson, our 11-year-old son with SPD, announces that he has Sensory Processing Disorder (SPD).  Perhaps they are shocked that he is so open about it. Sometimes their questioning look is redirected at me but typically the stranger responds with a nod that says “I have no idea what you just said you have but now I just feel weird about it” and the subject of the conversation changes.  So this brings up the big question:  Do you tell your child he or she has SPD?

Jackson was young when he was first diagnosed and we made the decision to tell him from the start.  He was beginning to notice that he was different from his other friends. His frustration was increasing when he struggled with things such as sports, writing and tactile sensitivity.  He so badly wanted to fit in with his other friends but didn’t understand why he didn’t.

The conversation went better than I expected when I explained to him that he had SPD.  I thought it would be a tough concept for him to grasp, but maybe I projected that onto him because I was still struggling to make sense of it myself.  I’ll never forget the relief on his face when it made sense to him for the first time.  I never used the word “disorder” or indicated that something was wrong with him.  Jackson is made perfectly in my mind, SPD and all, and I never want him to think differently.  SPD isn’t what defines him but is rather a part of him, just as my stubbornness is part of me. 

The one thing we’ve always made clear to Jackson is that while SPD creates obstacles, he has to work hard to overcome those obstacles. SPD is never an excuse not to try and it’s not a crutch.   We were once told by a medical professional that he would never be able to ride a bike because he’d never have the motor coordination to pedal one.  Thanks to my stubbornness (mentioned above), we went out and bought him a tricycle and put him on it.  Without any hesitation he took off like he was in the Tour De France.  So when I say that SPD isn’t his excuse not to try it’s because he taught that to me.  The lessons this child of mine teaches me are abundant and so important.

I know that many parents choose not to tell their son or daughter that they have SPD.  Typically they feel that their child will feel labeled or feel more different if they know.  Don’t get me wrong, this was a thought that haunted me day and night. I wondered if it would do more harm than good to tell Jackson, but at the end of the day I have no regrets.  Telling him and talking openly about SPD was the best decision for us.  Our decision to be transparent with Jackson has led us to find others that have SPD.  They light up when he tells them he has SPD because they also struggle with it.

Of course, we don’t parade through the grocery store announcing to everyone that he has SPD.  Some people do see him differently when they learn that he has it.  However, if he is questioned about a certain behavior or we are asked about SPD specifically, then we welcome the chance to discuss it because we do advocate that people shed light on this disorder.  That means we have to talk about it, be open about it and share our experience with others.  Silence is not going to make the medical community more aware of it.  It’s knowledge that will force them to include it in the DSM so our kids can get a diagnosis and thus bring about insurance reimbursement for treatment.

One of the moments that made my heart swell the most was when I was getting ready to go speak to a local group about SPD.  I was headed out the door when Jackson asked where I was going.  When I told him what I was going to do he responded, “When I get older maybe I can come with you and tell them what it’s like for me to have SPD.”  With tears in my eyes I told him that I would love nothing more than that.  What a gift I have in my son, SPD and all.

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Meggin has recently achieved a long term goal of founding a non-profit organization, Sensational Hope (www.sensationalhope.org), which provides community awareness about SPD in the Kansas City Metro Area. It connects families as well as assists children with SPD in the purchase of needed therapy equipment. Meggin resides in the Kansas City area with her husband of 15 years, Erich, her two sons, Bryce and Jackson, her two furry children (dogs) Chance and Sadie, two Rabbits (Max and Bailey), and last but not least, 10 fish.  Meggin is honored to blog for the STAR Institute and is looking forward to connecting with other SPD families.