Earlier in the week, after a particularly gruesome play date in which my toddler son, Danny, had ended up screaming uncontrollably, I broke down in my car. I had no idea what had set him off, and I didn’t know why he always acted so differently from other kids his age. I knew something wasn’t right.
No one would listen to me, but I knew in my gut that something was wrong.
So, I went to the library desperately trying to find a book with some answers in it.I read books on strong-willed children and parenting techniques, but nothing fit. I didn’t know where to turn, but I distinctly remembered thinking, “Oh, if someone could just tell me exactly what is wrong and what to do about it, I would never ask for another thing. Ever!”
Once Danny was diagnosed with SPD, I was filled with enormous relief. Finally, someone could tell me what to do. I had some answers. Answers, at last! Since then, I have sought answers wherever I could find them. I have read every book, magazine article, and website I could find, desperately hoping for answers. And each of these resources has helped. A lot.
But I never found the one SPD Bible that could give me every piece of information I needed. Worse still, some of the advice in these sensory books didn’t work for Danny. Much of it I needed to tweak and adjust for his personality and his sensory needs. Throughout all this, I often found myself wishing Danny had a more clear-cut disorder, one that had one simple cure or treatment.
The thing is, Sensory Processing Disorder is anything but clear-cut, a fact that has been brought home to me more than ever, now that my 5-year-old daughter has also been diagnosed with SPD. Her sensory issues and how she reacts to them are vastly different from Danny’s. So, what has worked well for Danny doesn’t always help Charlotte. It’s so much a process of trial and error.
Still, until recently, I obstinately clung to the desire for someone out there who could provide me with every solution to any possible sensory issue my family faces. Though I don’t typically relish being told what to do, I yearned for it in the face of sensory problems. Then, I remembered our first appointment with L, a seasoned OT who is SIPT certified. This woman is an expert. She knew exactly what was wrong with Danny within minutes of meeting him. And better yet, she had answers for me. Still, her expertise on SPD was limited to clinical work. She had never lived with a kid with severe sensory problems, so when I presented her with my most important question, she didn’t know the answer.
I asked, “What do I do when Danny has his sensory meltdowns? You know, the ones where he screams for hours as if he is being burned alive? How can I calm him down and relieve the meltdown? We have tried everything, and nothing has worked.”
Her answer: “Do all you can to avoid the meltdown in the first place.”
That was all.
I needed immediate, practical help with our daily living, and L couldn’t give that to me. No one could, because they weren’t living our lives.
I had to figure this one out on my own, just as I have had to figure out most of our daily sensory issues. I have cobbled together advice from other mothers, books and articles, and I have paid attention to what works and what doesn’t for my kids. I have treated it as detective work trying to tease out the many causes of my kids’ sensory problems.
So, the bad news is SPD does not have just one treatment that helps all kids.Worse still, there is not one expert in this world who has all the answers for families like mine who deal with SPD on a daily basis. But here’s the good news: Though I will likely never find an OT or author who can foresee my kids’ every struggle and help us on a daily basis, there is someone who is an expert on my kids.
That would be me.
Though I have no clinical OT experience, I do happen to have expertise in dealing with daily sensory issues and keeping kids regulated. And more than that, I know my kids better than anyone else in the world.
You could even say that I am an expert.
And this means that you, my friends, are also experts.
We may not have degrees in OT, but we, more than anyone else in this world, understand our children and how SPD affects them.
Do you have any idea what this means? It means we are not helpless! We have the power to help our kids! There is hope!
For the most part, it’s up to us, as parents, to figure out what works and what doesn’t. Although this can be supremely overwhelming, it also has the potential for some of the most gratifying experiences you could have in your family. And now, more than ever, we have amazing resources that can help us find answers for our families.
We can each write our own family’s SPD Bible.
It’s a big responsibility, but who better to take it on?