A young couple walked into a support group meeting I attended the other day; holding hands, exchanging glances, and looking worried and nervous. I quickly offered them a seat next to me, and listened closely when it was their turn to introduce themselves. They had two young boys, one four and one two. Their oldest was newly diagnosed with Sensory Processing Disorder and they were very confused. I could relate immediately – that was me five years ago.
Before long I was sharing information on resources, support organizations and what books to read. I even made suggestions on to how to help their child eat better and get a haircut without melting down. But then, the husband asked me a question I just wasn’t expecting: How do I tell my child he has Sensory Processing Disorder?
As I began sharing with them the benefits of talking openly about SPD with their child, I thought about how crucial understanding SPD was to my son’s development, self-regulation and self esteem.
Someone wiser than I once said, “If you don’t label your child accurately, someone else will inaccurately.” And my experience has proven this to be true.
I do understand the argument not to tell our children what is going on with them – that somehow the knowledge of their disorder will give them ammunition to behave badly and blame it on one acronym or another. But for me, I am not as worried about how they can benefit from the label, but rather how the label can benefit them.
If your child had diabetes – would you not explain how they needed insulin or how too many carbohydrates would cause them harm? Of course you would. If your child had Celiac Disease, wouldn’t you teach them from day one how to respond when offered a muffin? Of course you would. Just because Sensory Processing Disorder is a neurological disorder – invisible to the naked eye – doesn’t change the need for our kids to learn how their bodies work, and what they need (and what they should avoid). Perhaps the ‘invisible’ nature of their disorder makes it that much more important they know what is going on.
I believe knowledge is power – and if this is true for adults, it is equally true for kids. After all, if you aren’t told what is going on, how can you understand it, let alone gain a mastery of it? We as parents spend a great deal of time and energy learning about our kid’s diagnoses. Once we get that information solidly in our grasp, we use it to advocate for our kids with teachers, doctors and professionals, whenever we feel it is needed. The kind of power that stems from knowledge is key to our children’s ability to advocate for themselves – to feel in control of what is going on inside of them. I believe that when our children know what their bodies need and how to get it in a socially acceptable way, then they can learn to self regulate and that is what all SPD parents want for their children.
That kind of mastery is only achievable through acknowledging and understanding Sensory Processing Disorder.
For my son Gabriel, I don’t think there was a first time he learned about SPD, but rather many milestones in his understanding. Those steps have allowed him to become an excellent self-advocate, both at home and in his classroom. My son will quickly determine a safe option for heavy work, ask to be ‘pushed’ on for deep pressure into his shoulders, and often can be found pressing together his own hands or simply pushing a wall. Your child can learn to master self-regulation too, but giving them the information – the power – to do so is the first step.
Here are some ways to you can open up the conversation about Sensory Processing Disorder with your child.
Tell them the truth. I feel like so many times, as parents, we are focused on protecting our children from the truth, when really, the truth is so much easier to understand and process than anything else. Use the real name – Sensory Processing Disorder – not a cutesy pet name to skirt the issue.
Give a simple definition. The one I quote for children is a modified version of the SPD Foundation’s definition, “Sensory Processing Disorder is like a traffic jam in the brain where the information from all eight senses gets jumbled up, sometimes making it hard to act appropriately.” If your child is much younger perhaps in preschool, start more simply, “Your body needs more input from your senses to stay calm and organized.” If your child is even younger, a toddler, you can still use simple sentences like, “Your body needs input” to increase their sensory vocabulary.
Not too much information at once. Often when we are super over-prepared to tell our kids something ‘important’ we fail to realize that we are giving them WAY TOO MUCH information. Make it a point to tell your child, but don’t elaborate about the details until they ask. Children know what they are ready for, and what they are not ready for; follow their lead.
Teach them all eight senses. This is probably the biggest theme in my household. I truly believe that life would be that much easier for our kids if only they, and their peers, were taught there are eight senses from the beginning. Once you start to point out the ‘other three’ senses (vestibular, proprioception and interoception) in real life – it makes it easier for our kids to recognize when they need input from those senses. Knowing what proprioception and vestibular mean makes it more natural for our kids to ask for heavy work or spinning – it takes the ‘weirdness’ out of their behavior, and not just for our child, but for those around them.
Accurate labeling. Chances are your child already knows that he/she is different from their peers. Instead of letting them misunderstand the whys – give them the answer: Your body processes sensory information differently than others. Plain and simple. They are not bad kids because they yell, or occasionally hit. When they can tie the inappropriate self-regulating behavior to a specific reason then they don’t internalize the problems and think something is intrinsically wrong within them. Having a child that says, “I hate myself” or “I’m stupid” is just heart wrenching for parents – and for kids. When we as parents are able to tie our children’s behavior to their need for sensory input it allows all of us a better view of the challenges our kids face.
Use a book. Using a book is a vehicle that will allow you to give information to your child in a readily available and kid-friendly manner – great for parents who aren’t sure ‘where to start’. Incorporating difficult subjects in a familiar way can be very helpful for younger children, and especially those who have auditory processing issues and rely on visuals in other areas. My suggestion for younger children is the book Sensitive Sam by Marla Roth-Fisch. This book is written with unique rhyming couplets and its positive message lends itself well to explaining to a child about Sensory Processing Disorder, while giving encouragement that Occupational Therapy will help them learn to manage their SPD. If your children are older, in elementary school, then I would suggest using my book, This is Gabriel Making Sense of School as a guide to the senses, how they work, and how SPD effects them. Remember when using a book that it is not a substitute for your own judgment or your need to provide personalized information for your child, but rather a good way to open up the conversation.
Be specific. When your child asks questions, which they most likely will at some point or another, give them specific answers. Kids don’t think in generalized terms like “You need heavy work when you are wound up,” that kind of statement is too broad. Use specifics like, “When you are crashing into your brothers it means your body needs input; try jumping on the trampoline or crashing into your bean bag to get the input your body needs.” This type of example gives your child control over their behavior (And don’t all of our kids want more control!?), and ultimately is a step towards self-regulation.
Don’t hurry and don’t delay. I think it is important to tell our children about Sensory Processing Disorder sooner rather than later. Even though we may have just learned the term SPD and may not be completely comfortable with it yet ourselves, it doesn’t change that our children have been living with it their whole lives. I suggest that you only breach the subject with your kids when you are prepared to answer the questions; yet, don’t use that as an excuse not to tell them anything. Get prepared and get talking. There is no better time than the present.
And the couple at the support group meeting? They went from worried and nervous to relaxed and motivated in one evening. They had found resources, information and new ideas to help their child. There is nothing more empowering than knowledge – for us and our children.
Teaching your child about Sensory Processing Disorder is a progression. Start with one little step at a time and build slowly. Understanding won’t come for them in one fell swoop, any more so than it did for you. This takes time. Be patient, it will be well worth it.
*This article originally appeared in SI Focus Magazine Fall 2010