Sensory Processing Disorder – It’s Real and It’s Never Too Late

Sensory issues are a part of our life. They are a significant part of our life.

Sensory Processing Disorder (SPD) has changed the way our entire family interacts with the world. For example, I was shopping alone (praise Jesus!) at Costco the other night. I heard a baby starting to wail and I instantly tensed up. Not for the poor little baby – I tensed up because if my son were with me, that noise coupled with the lighting, the smells from the samples, the sounds from the shoppers, etc. would likely set off a meltdown.

And while it affects us all, nothing compares to how difficult the daily struggle is for my son. He has spent eleven years trying to organize his world to avoid the things that aggravate his sensory system the most. For years he has had panic attacks just driving by a fast food restaurant (good for our diet, bad if you need to stop and use the restroom on the road) because of the smells. He pulls his shirt up over his nose every time he opens the refrigerator, just in case there are leftovers.  He avoids beaches, park play areas, and even walkways that have sand, often walking in completely the opposite direction if necessary to find a way around it. Halloween costumes, Fourth of July Fireworks, socks, jeans, shoes that are not crocs –  all things that are on his list of things to adamantly reject and avoid.

crocs - a sensory momma's best friend
crocs – a sensory momma’s best friend

I can’t blame him. For so long, rather than trying to understand and work with him, I tried to force him to learn to cope, accept and just deal with it. So did every other adult in his life.

In summary, it didn’t work. At all.

It wasn’t until I started doing more research that I began to understand my son, and his super responsive sensory system. I began to learn the depth and significance of what has been so painful to him for so many years.

Temple Grandin in The Way I see It, speaks candidly about the sensory issues that accompany her autism diagnosis. She speaks candidly about how little research and understanding there is, for something that she considers to be the most significant impairment in her life.

I agree with her. The one thing that I wish I could alleviate for my son, above anything else, is the way his sensory system impacts his daily life. One of the first things I came across when I started researching SPD, was this list by Stanley Greenspan, in The Challenging Child:

Imagine if:

  • You could see obstacles in your way, but you could not make your body move the direction you wanted it to avoid them.
  • You felt like someone had given you a shot of Novocain in your backside so you couldn’t feel if you were sitting in the middle of your chair and you fell off 2 times as you read this.
  • Your clothes felt like they were made of fiberglass.
  • You tried to drink a cup of water from a paper cup, only you couldn’t tell how hard to squeeze it to hold onto it. So, you squeezed it too hard and the water spilled all over you. The next time you didn’t squeeze it hard enough and it fell right through your hands and onto the floor.
  • Every time you tried to write with your pencil, it broke because you pushed too hard.
  • The different smells in this room made you utterly nauseous.
  • The humming of the lights sounded louder than my voice.
  • You couldn’t focus your eyes on me because everything and everyone in the room catches your attention and your eyes just go there instead.
  • The lights are so bright you have to squint, then you get a pounding headache
  • Every time someone touches you, it feels like they are rubbing sandpaper on your skin.
  • People’s whispers sounded like they were yelling.
  • The tag in the back of your shirt makes you feel as uncomfortable as you would if a spider was crawling on you and you couldn’t get him off.
  • You had to pull the car over 3 times in an hour drive because the motion makes you sick.

When I first read this list, I was shocked by how every day and familiar these reactions for my son. This was our life – exactly.

He went on to write:

“Sensory processing disorders are best treated if caught before the age of 7 when the nervous system is still malleable.”

Before the age of 7??? At that point, my son was almost 10.

Because I blamed myself for his issues, my son did not get help until really late in the game. In fact, when we first started looking for an occupational therapist (the typical referral for sensory issues and their management), we couldn’t find one that had ever worked with a boy his age. They all specialized in the 3-5 year old crowd.

I felt defeated before we even started.

It wasn’t until we finally met our current occupational therapist (after four long months of searching and having disaster after disaster at OT gyms throughout the area) that we began to make progress. She not only feels comfortable working with an eleven year old boy, she enjoys it.

Sourdough at Occupational Therapy. It always looks a little crazy, but it always works.
Occupational Therapy – it always looks a little crazy, but it works!

It has been a year since he began occupational therapy and the progress has been nothing short of AMAZING. In the beginning, we created a list of goals. Most had to do with self management and regulation – like when things are overstimulating, how does he work to get himself out of the situation and calm down. Some were around specific areas of his body that were particularly sensitive, like his hands and feet.

He resisted going for three months. Three months of meltdowns, every single Thursday.

Then, one day, it clicked. His therapist was super patient, never forcing him to do anything he felt uncomfortable with, always encouraging him that he knew his body best – when to push it and when to rest.

She might be one of my favorite people ever.

As more and more research is done around this little understood disorder, I am sure more and more recommendations will be made for early intervention. It just makes sense.

I am also sure that it is never too late.

I am sure that with the right professional, caring and committed, my child has made more progress in managing his sensory system than I ever dreamed possible.

I am sure that although we missed the optimal window for treatment, he has been significantly helped and his life will be infinitely better because of occupational therapy.

I am writing this today because in the past week I have seen several articles circulating – some stating that SPD is just a “made up” disorder, some stating that it is too late to treat SPD past age 6 or 7.

For the record, although I am the first to admit I am not a medical professional, I disagree. Across the board. With both.

It does exist. Ask any momma of a child with it – better yet, ask the child or the otherwise diagnosed adult who grew up dealing with it. They will all tell you, Sensory Processing Disorder is real.

Moreover, our family is an example that it is never too late for treatment.

It’s never too late to learn, to make progress, to see real change, and to actually help improve your child’s life.


SPD

 

 

14 thoughts on “Sensory Processing Disorder – It’s Real and It’s Never Too Late

  1. Thank you Shawna for this important reminder and for the information. My 14 year old daughter has autism/ID/ Spd/OCD- lots of goodies. I’m still trying to find an OT to work with her for sensory integration, ugh. We have only just discovered that she does much better at a resturant (only place she likes to go is Islands) if I provide her with earplugs.
    We had a great time during dinner on our last night of vacation thanks to the ear plugs.

    1. Hi Aimee and thank you so much for commenting. I wish there were more OT’s that specialized in working with older children and even adults. I think it would be great business model for them (they would make a mint!) and it would serve our families so well….and I am so glad the earplugs worked!
      Love,
      Shawna

  2. My son is autistic and still has some sensory issues. He actually loves the tags in his clothes and he can handle fireworks now, but everytime my fiancé gets frustrated at him for not maintaining eye contact while he (my fiancé) is talking I just wanna cry. He isn’t trying to be disrespectful; he can’t help it! During crowded events we just give him a solitary place to go if he needs to. I just wish I could make my fiancé understand that Luca is a child and doesn’t understand his own body sometimes or how to express what’s going on with himself and I am not undermining his authority, just trying to protect my boy and help people understand him.

  3. Thank you for yet another touching and well written article! I love your honesty yet absolute resolve in all the posts I have read of yours. Your are very talented writer and your son is very blessed to have such an amazing mama!

    1. Kari – Wow! Thank you so very much. Your words are such a blessing to me. It has been a tough week, and I needed the encouragement this morning.
      Love,
      Shawna

  4. My daughter was FOURTEEN before we FINALLY got a diagnosis…Started searching at age 9!!! I just found you blog! SO encouraging and insightful! I want to print all you posts for future rereading and highlighting!

  5. My son has SPD and is 10 years old. Went to OT when he was 5 but never really did much good due to not having the right therapist. Any advise on how to find that “life changing therapist”?

    1. The only thing I can say is keep trying. Be very upfront about your son and his needs. Also, ask if they have ever worked with a child your son’s age. Ask to speak with the OT first, without your son, even if it’s on the phone. That was helpful in eliminating a few candidates, without our son having to be exposed to more negativity/uncertainty, and also helped us find our life changer.
      Praying for you and your search right this minute.
      Love,
      Shawna

  6. This was a timely post for me. I think I came upon it via one of the SPD Facebook posts, it just happened to pop up in my feed today. My 12 yo son has not been diagnosed, but I am fairly certain that this is what we have been going through with him since the beginning. He is primarily under-responsive, just a few things he is certainly over-responsive. It took quite a while to get him to wear jeans, to not throw up his food that didn’t feel right in his mouth. There were several things that we just accidentally pushed/worked through. But there are still things that I don’t know what to do about them and to help him as he is becoming a young man. My husband worries that he won’t be able to function fully as an adult, but I have hope that we can work towards that.

    I plan to look through your site here. Thank you for writing about your son, especially him being “older” and past the so-called malleable time frame.

  7. What’s blessing to find you tonight. My ten year old son just was diagnosed with Sensory Processing two weeks ago and we are on a wait list for developmental testing but both therapists say that they would put him somewhere on the spectrum. We were dismissed by our pediatricians that recommended to medicate for ADHD. We tried a couple different medicines briefly and both made him way worse! So for the past five years we have been going it alone doing the best we can.
    I am so relieved we now have an OT who understands him and is educating us!
    I shirked the labels 5 years ago, this is our boy, this is how God made him. But we struggle.
    We left the public school battle behind in the beginning of first grade which made life better for all of us.
    Long story shorter, I have been crying all day, after a dad volunteer in my son’s Sunday School class which I teach, grabbed my son by the arm, dragged him out of the class, punched him down in the corner and with force and intimidation tried to tell him that he couldn’t go to Sunday school because he doesn’t follow directions. (Said directions that he was to put down the pens he was holding, for absolutely no reason other than this mandecided he was going to enter into a power struggle with a Ten year old boy) . I got between my son and this man and stopped him. UGLY! So Hunby wanted to either go have a talk with this guy (bad idea) or for me to file a police report. I ultimately decided we should shake the dust off our feet and will not return to this church 🙁
    It’s comforting to know I’m not alone.

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