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The SPD Companion, Issue #007-- Explaining SPD To YOUR Child
September 07, 2006
Welcome to the September edition of the SPD Companion (Issue #007). I hope everyone had a wonderful summer and smooth transitions back to school! Ah, back to school...not always easy for our little cherubs, is it. If your child is having difficulty, just do the best you can and know that this too will pass. If your lucky, you have a child like mine who NEEDS that structure and routine school offers and looks forward to it starting again. She settles in quickly, thank goodness. Summers on the other hand...not so good for her.

Anyway, today I want to talk about an important topic that MAY lead to better transitions and better functioning at both home and school.


This is a broad subject and one that may not be easily summed up as every child and every parent is different. However, I would like to share with you what I personally believe, what I have done, and advice from other parents on explaining SPD.

Over the past few months I have received several emails asking this very answer is usually the same. TELL YOUR KIDS ABOUT IT AS SOON AS POSSIBLE, TALK ABOUT IT OFTEN, AND EXPLAIN IT IN AS MUCH DETAIL AS IS AGE APPROPRIATE. I feel EXTREMELY passionate about this!! (Gee, could you tell from the caps?)

Let me help you understand why I feel this way and advise you to as well.

Do we BLAME someone for having a head injury, for having schizophrenia, for having a broken bone, for going bald, for being born with Cerebral Palsy, for having seizures, etc.? NO! Why not? Because it is not their fault! And neither is SPD!

Sensory Processing Disorder is a neurological, sub-cortical brain processing "deficit". The wiring is just not what it should be. The nervous system is not processing input in a "normal" and adaptive way. Is this the child's fault? The parents fault? NO WAY! It is physiological NOT psychological!

Can it lead to psychological and behavioral problems? OF COURSE it can...but, we are here to educate, learn, and deal with this disorder BEFORE this gets too far.

Can we prevent it? Can we cure it? NO, but we can surely help our children and the people in their world understand it and know how to help them! WE CAN INFLUENCE AND IMPACT IT'S EFFECTS through proper diagnosis and effective therapy!

Can we change the way a child's brain works to lessen the severity of SPD...YES WE CAN!

Can we make accommodations and modifications to a child's environment to lessen the symptoms...YES WE CAN!

Can we educate other people as well as our child on how best to deal with and cope with this disorder...YES WE CAN, and YES WE NEED TO!

To Tell...Or Not To Tell

Me and my husband got into debates about what and how much to tell our daughter, and why, several times. His point was that he didn't want her to be "labeled" and live out that label as a kind of identity and self-fulfilling prophecy. This I can certainly understand and there are times when labels are just not appropriate because of the judgements and prejudice they cause. This particularly came up for us when in 3rd grade, the teacher asked everyone to introduce themselves and tell the class something about them. Our daughter decided it was in her best interest to let everyone know right off the bat... "My name is .... and I have 'sensory'" (as she used to call it).

This concerned her dad that she felt THIS was the one part of her identity she chose to share. He didn't like it. I, on the other hand felt proud that she took that opportunity to lay the cards on the table and not be ashamed of something that is difficult for her...she was letting everyone know what may be hard for her that year."

I say this...if a person understands themselves, they will then be open to accepting it and finding ways to help themselves cope with the cards they were dealt. Don't we all have crosses to bear?? I truly believe they need to is NOT THEIR FAULT, NOR IS IT THE PARENT'S FAULT. This is a message that can bring GOOD mental can only help, as far as I am concerned.

Should we present it in a way so as not to allow the child to have a crutch to lean on throughout life?...YES WE SHOULD.

Do we want them to take some responsibility for their actions?...YES WE DO.

Can they always do this on their own?...NO. Do they need our help?...YES!

Of course it is the old nature vs. nurture debate, and some of us are concerned about how much nurture plays a role. It surely does play an important role...not for WHETHER YOUR CHILD HAS SPD, BUT FOR HOW TO HELP THEM HELP THEMSELVES! Having SPD is the "nature part"...we know this! What to do about it is the "nurture part". HOW WILL WE HELP OUR CHILDREN? That is up to you and what you feel is best, but I will try to "influence" you based on what I feel is best, from my own experience. You can agree or disagree, that is your personal choice. If you do disagree, feel free to voice that to me. I enjoy hearing other's opinions and learning from them!

The Consequences Of NOT Talking About It

Honestly, how many of you parents knew from the very beginning of your child's life, something was different? I bet most! There just hasn't been enough time for "nurture" to affect them. Is every child different? Of course. But, many of us, before we "knew" what was "wrong" knew there was something that needed some extra attention.

Even adults, just finding out about this disorder (if they have it too), will have those lightbulb moments that say...aha, THAT explains why I did this, liked this, didn't like this, etc. And, as adults just finding out for the first time, we finally understand what was "different" and so very difficult for us! We finally find out what has shaped our behaviors, self-esteem, and own mental health. For our kids with SPD, they are MORE than just preferences... they are physiological NEEDS!

From the very beginning I have explained, normalized, and validated. These are three very important concepts...especially validation!! Think for a minute about times in your life when you had certain thoughts or feelings and someone close to you just dismissed them, didn't listen, didn't care, didn't validate and/or told you to "just get over it", "forget about it", "it's no big deal", "you're too sensitive", "stop it", etc. How do those comments make you feel? How about just being told to do the opposite of everything your heart, body, and emotions want you to do? Have YOUR feelings been dismissed and invalidated...I am almost 100% sure they have at some point. Think about how that affected you when it happened.

Now, think about having that happen every single day. Your body is doing one thing, telling you one thing, and you are not allowed to do it or feel it. Suppressed feelings are horrible and explosive. Can you help the way you feel? NO! Can you DO something about the way you feel if you know why? YES! Does your self-esteem and self-worth depend on those feelings and how they are reacted to by others? When you are a child...YES! Inappropriately dealt with, It DOES lead to low self-esteem, ineffective coping mechanisms, isolation, and shame.

What if you had a spasm in your arm 20 times every day that caused your arm to flail about for 30 seconds.

When you tried to do things with that arm you couldn't.

When you tried to talk about it, you were told it isn't true.

When you tried to make friends you couldn't; they laughed at you, mocked you, didn't understand you, and called you names.

When you tried to get help people told you it was your fault or your parent's fault for the way you were raised.

When you attempted to make it go away by seeking a diagnosis and treatment, doctors dismissed it, or misdiagnosed it and put you on medicine for migraines.

The bottom line is you walk away from all these experiences feeling that things are your fault, you have no control over anything, you are weird and different, and no one likes you because of it. It sure is hard to make friends in school when your arm keeps flailing about and even hitting other children at times. So, finally, you fail socially, you hate being in public, you don't feel you can make it stop, and everyone looks at you like you are strange. No one will accept you with such an odd quirky behavior.

Do you get my point? This is what misunderstanding and invalidation cause!

SPD Explained

Even though I "knew" my daughter had SPD from early on, we didn't get her officially diagnosed until age 7. Up until that point, I spent most of the time making accommodations and modifying her environment as preventative measures, and a LOT of time validating her sensitivities, when no one else understood or was willing to. This was enough, until "trouble" outside the home began; because at 7 years old, her world was quickly opening up and expectations of maturity were increasing.

She started having severe anxiety at school, during new experiences, in noisy environments, playing with others on the playground, in social settings, at friend's houses, at family gatherings, etc. The poor kid had bottled so much up over the 7 years, until I finally understood she NEEDED to know MORE! MY MISTAKE...I thought I could just do it all for her and protect her from all that was uncomfortable. I thought I could keep the pain away, whatever the cost! I thought I could make it all better because I KNEW and UNDERSTOOD her diagnosis! GEESH, WAS I WRONG! She didn't need me to control her and everything around her...she needed more control, more self-awareness, more maturity, and more understanding of how her SPD was playing out and affecting her everyday experiences. She needed to know why and how and take ownership of some of her feelings.

What changed?

Why now?

Because we admitted we needed help! Finally, an evaluation, a diagnosis, a treatment plan! So, once a week we found ourselves at the OT clinic working on just those things that caused anxiety and were difficult for her. Now THERE'S a new concept...admit and deal head on with those things that made her "less than perfect". No more protecting her like an endangered species, like a porcelain doll that would break, like my precious child whom I couldn't bear to see struggle or in pain. It was time to let go of MY fears!

I truly believe it is just that...our OWN issues that cause us to keep quiet when we should talk. We're scared, we're afraid...what will I DO to them if I tell them what's "wrong" with them?? We all want what is best for our children...we want them to feel loved, have high self-esteem, be safe, happy, successful and confident. But, I believe OUR FEARS of exposing them to the truth about their SPD will actually rob them of all of these things in the long run!

Once I realized this, I could finally admit to myself and talk to her about her "imperfections" (I never called them that), her reality, the cards she was dealt. AND, because of who I am, what I know and believe, and what I wanted for her, I knew I had to do it in a non-chalant and most positive way possible. And so we started.

She asked...

"Why do I have to go to Miss Leigh (the OT)?"

"Why do I have to get my skin brushed?"

"Why do I have to try foods I don't like?"

"Why do I have to have 'sensory' (as she used to call it)?"

"Will it ever go away?"

"Did you make me this way?"

And so much more.

I answered every question she had about it. I gave her all the age-appropriate information she needed; to understand it herself, to feel confident in explaining it to her friends and/or teachers, to not be ashamed of who she was.

After I answered some of these questions and gave her a general overview of sensory processing, we continue to talk often about how her sensory defensiveness affects her. I would say, "you know how you did/said... THAT'S sensory defensiveness, THAT'S anxiety, THAT's SPD, etc. And I know you don't like feeling that way, so me, daddy, Miss Leigh (OT), and Pat (psychologist) are all going to help make this better for you!

Other answers included things like...

"You know how loud sounds bother you? Well, that is because you have super good hearing and you can hear things other people don't. Everything just sounds louder to you, and this is why it hurts. But if you know this, then you can prepare yourself for the times that bother you. Cotton balls in your ears during fireworks and family gatherings, keeping your hands over your ears during a firedrill, shutting windows when outside noises bother you, etc. Because you can hear things other people don't, you have the ability to hear all the things the way your puppy does. You can both help each other when loud sounds are around."

"You know how you don't like to try to eat new things, and how you don't like many foods that others do? Well, that is because you have oral defensiveness. This means that you feel things in your mouth differently than other people. You feel every bump in your food, every new taste, every part of the food that other people can't feel. So it takes you longer to get used to foods, and you have taste buds in your mouth that tell you right away whether a food tastes good or not (or which particular part of the food you liked/disliked). Your mouth is sensitive, more sensitive than others. Ah, but all this sensitivity in your mouth can really make you taste and appreciate the foods you DO like better than other people." This is also why you have a hard time at the dentist. You don't like people touching your mouth and teeth because you feel it more than other people. The tools, the cleaning, the flouride, the toothpaste, the hands in your mouth... your senses can feel things that others can't. This is not a bad thing... it just is. We will tell your dentist and hygenist about this and they will be more careful. There are also things we can do to help decrease this sensitivity...let's give them a try!"

"You know how you have a hard time being upside down or tipped backwards? Well, that is because your body is telling your brain this is not fun, and it feels dangerous. This is why you don't like tipping back in the dentist's chair, or leaning your head over the sink to wash your hair, or doing somersaults. The good thing about this is that you won't get hurt as often as other kids. You are careful when you play and it will be rare that you ever hit your head and get hurt. That is a GOOD thing!"

"Remember how you didn't like to sit on Miss Leigh's giant ball? It made you feel unsafe, like you were going to fall off? This is called gravitational insecurity. Because your body feels things better than many other people, if your feet are not on the ground and you start to move, it feels scary to you. This is ok, it is just your senses telling your brain BE CAREFUL! I would much rather have a kid that is careful than a child who isn't uncomfortable with anything and gets daring, dangerous, and hurt all the time. So, it takes you longer to get used to these feelings of what! Oh, that is also why you like to sit down in elevators...that movement sure feels weird doesn't it? Like you are just floating through the air and you don't know when you are going to land?"

"You know how those new jeans we bought feel uncomfortable around your waist from the stitching? That is part of having tactile defensiveness. You feel touch, and things touching you more than other kids. Guess what? This is ok, grammy has to sew on a piece of soft fabric to make them what! No big deal. You know how I love soft things just like you? You know how grammy cuts all of her tags out of her shirts? Those are just like you...just wanting to be more comfortable, since we can feel more than most. Your sense of touch is so good that I bet you can feel dangerous things before others can, or you can close your eyes and know what something is just by the way it feels, you enjoy the heaviest and softest blankets they make, great, that's why they make them...we ALL have preferences. And, if someone is bothering you by touching you too much, just let them know it doesn't feel good...give them another way to be close to you. Speak up and let them know you don't like surprise touches, or ticklish touch, or anything rough touching your skin. To you, these things feel like sandpaper and spiders crawling all over you. Everyone needs to feel comfortable and it is a GOOD thing that you can stay away from uncomfortable feelings and know when something makes you uncomfortable. Now you can speak up and tell people what you like and what you don't like, because you know it more and sooner than other people."

"You are blessed with having many of these sensory can hear, taste, feel, move, and smell better than other kids. This makes some things harder, but other things become talents and skills that you have as a result, that others don't. Your amazing hearing makes you hear every single note and intonation someone uses when they sing a song. AND, you can remember it so well that when YOU sing, it sounds EXACTLY like that person...did you know most people can't hear that or do that? Yes, at times things will be harder for you when your senses are overloaded. You may need more breaks than other people, but in your sensitivities, you will find gifts and talents! And you will know right away whether you like something or you won't waste your time doing things for a long time only to then decide you don't like it. You will figure out what you do and do not like quicker and be able to share your preferences with people. You will also have to be brave and try new things just to see whether you like them or not. I know this is hard for you, but you can't decide whether you like something or not, if you haven't tried it. Just try, THEN decide. And you know what? You WILL be a LEADER, NOT A FOLLOWER. What a GREAT thing to be...proud of who you are, doing what you want and letting others in who like the same things as you...not doing things just to fit in and be popular. This is a wonderful part of your uniqueness. Be firm, be proud, and trust yourself to know when something feels right."

You get the point, I'm sure. The point is I name it, I explain it, I validate, and I help her understand both the down side and benefits of it, THEN what she can do about it. We have had soooo many discussions, it is hard to remember all the things I have said or worked through with her.

Those times that she cried, recoiled from people, refused to go places, had stomach aches and anxiety attacks, headaches from the noises, couldn't fall asleep, couldn't play on the playground like other kids, felt fear when being upside down, couldn't wear jeans or other clothes her friends were wearing, had to fall asleep to an ocean wave tape (or vibration in the younger years)...I understood, I explained, I listened, I held her, I felt her pain and validated her. When anxiety hits over the unknown, the unfamiliar, the new experiences, she says "I don't want to feel this way mommy". And I say, "I know sweetie, we'll get through this"...and we are with the help of her therapist and her family. Identifying, normalizing, validating, and learning coping 11, these are key!

SPD...A Gift? Different Perspectives

To be honest, there are times that I have wondered if my daughter is at all capable of empathy for other people. I worried about that. Many times she does not seem to tune into, nor appreciate, other people's feelings or experiences...even now at 11 years old. Maybe it takes so much energy and concentration to "be on guard" (defensive) all the time she doesn't have the energy left to focus on other people's comfort or discomfort.

But, luckily, I now know she IS capable of it, and it is a DIRECT result of/relation to her SPD. She feels the noise sensitivity of her dog, she sees other kids covering their ears with loud noises and knows exactly what that feels like, she empathizes with her dog's anxiety when he knows he is about to be left home alone for the day, she understood gravitational insecurity when she saw an autistic girl's panic from square floor tiles in an office building, she understood a sensory seeker when she saw him bouncing like a Lemur all the way across the floor (on his feet, bouncing in a crouched position) for 3-5 minutes at a time. She understands other kids that are "picky eaters", she understands why things are harder for some people; from learning to moving, playing to talking, smelling to hearing.

Would she feel compassion and empathy for these people or animals if she did not have SPD? Probably not... IT IS IN HER "UNIQUENESS" THAT SHE understands them.

The hardest part for my daughter to REALLY truly understand is how a sensory seeker could have the same "problem" as she did, the sensory avoider. It IS a hard concept to understand from a child's point of view! But once she "got it" she didn't run away from them. She could bond with them on a different level than most...they weren't quite as "annoying" to her anymore. Sometimes they even balanced each other out as they became friends!

So...the more YOU know, the more your child should/can know, the more you can help your child overcome any obstacles and accentuate their gifts/strengths.

SPD does not have to be a can be a gift! YOU can make it that way for your's up to you. Please help them understand, let go of YOUR fears, and give them the gifts of self-awareness, a listening ear, compassion, and self-esteem!

You'll know when it is time to talk!

How do other parents explain SPD to their children, and why? Don't miss these precious stories!! Differerent Parent's Perspectives: Explaining SPD To Children

Until next time my friends...let go of that fear and start talking!

Take good care.


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