Sensory Processing Disorder (SPD) has given me some scares as the mom of our 11 year-old son, Jackson. I have to say the worst of it all is his high threshold for pain.  Often time’s kids with SPD are on one far side of the spectrum of pain awareness and tolerance.  Many parents I talk to have kids with a very low tolerance for pain, while others like me will report their child having an incredibly high tolerance.

At about two years of age, Jackson still wasn’t walking. He had gone from being immobile to upright on his knees and would “walk” on his knees. Crawling was absent from his developmental stages, which is common with SPD kids.  Our floors were carpeted and I would watch as his knees became red with rug burn (you’d be amazed at how fast he could move on his knees), yet he would never complain and would take off time and time again on them.  Hard floors, carpet, concrete…it didn’t matter. He would rarely cry when he would fall or bump into something. While I never purposely compared him to other kids including our older son, I did think it was odd that he didn’t seem to cry as much as other kids did when experiencing a painful situation.

Once Jackson turned three and then four years old, he had his normal share of illness with the typical cold, sore throat, fever, etc.  He would tell me he felt bad and I would wait my customary day or two to see if it was just a passing virus.  I realized fairly quickly that within a day his symptoms would worsen to the point that we would be rushing him to an urgent care.  There was no warning ahead of time. I started paying much closer attention to him at this point. I realized that by the time he complained about being hurt or sick that he had been that way for a while. His pain tolerance was so high that he didn’t complain until he was really uncomfortable. I also noticed that many medications for pain relief didn’t work on him as well as they should.

A few years ago Jackson broke his little finger on his right hand. I was at a meeting that evening when my husband texted me saying Jackson had hurt his finger and that I needed to take a look at it as soon as I got home.  I came home to find Jackson sitting on the sofa with his hand resting on a pillow. His finger was displaced away from his hand, approximately three times its normal size, and bruised.  He looked uncomfortable, but was sitting there watching TV.  I admit that I am opposite my son and a total pain wimp, but holy cow Batman!  That would hurt anyone!  I loaded him up and off we went to the emergency room.  X-rays showed that it was dislocated and definitely fractured.  No surgery was going to be needed but they would need to reset his finger before splinting it, and suggested some pain medication prior to doing that.  I explained that he had SPD, a high pain tolerance, a high tolerance for pain medication and that it typically doesn’t work.  I got the customary “that’s nice” nod from the nurse and the doctor.  They gave him a hefty dose of a narcotic pain med and assured me that within ten minutes he wouldn’t care what they did to him.  Ten minutes later they were shocked to find him still watching TV and acting like they’d given him nothing.  One more round was given with no change.  It was then decided they would reset it regardless.  It was painful for him when they put the finger back in place, but those of us with a normal or low pain tolerance would never have made it through this without making it sound as if we were in some sort of medieval torture chamber.

This is only one of the many situations that taught me I have to be an advocate for Jackson.  Many medical professionals are used to over-reactive parents that rush their children to the hospital at the slightest sign of illness or injury.  By the time I take Jackson in we’re usually facing an uphill battle to some type of recovery.  I can’t count how many times I’ve gotten “the look” or the eye roll that says “Oh, you’re one of those moms.”  It’s all I can do not to chuckle when they do the exam and say, “Wow!  It’s a good thing you brought him in!”

As Jackson gets older we are working to teach him body awareness and how to listen to those interceptive sense messages, including pain levels.  I know that he’ll get there but I’ve decided that having a “tough guy” for a kid isn’t all that it’s cracked up to be.  I’ve seen parents telling their kids to stop crying because “it doesn’t hurt that bad.”  I look at my son and wish he could tell me as quickly as their child does when he’s in pain.

If I want to make a major point with this blog, it’s that it’s imperative that you become a strong advocate for your SPD child.  You have to develop a tough skin and learn to endure the disbelief or dismissal of the medical professionals when you know something’s wrong.  Never forget that you know your child better than anyone.  Trust your instincts and don’t give up until you find that right doctor and therapist who are willing to listen to you.  I’m so blessed to have an SPD aware pediatrician on board for Jackson, as well as having had the STAR Institute experience.  It’s a huge learning curve for you and the medical community, but I promise that if you ride out the storm there’s a real pot of gold at the end of that rainbow.

If you are looking for SPD treatment for yourself or your child fill out a child or adult intake form now to be treated at STAR Institute Treatment Center or search our Treatment Directory to find services in your area.

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.