Friday, October 10, 2008

What I wish other people understood about SPD, Part 1

Over the years, I have often wished I could make other people understand SPD better. Especially those people who laughed when Danny was having a full-blown sensory meltdown in the Steak N' Shake parking lot. Or the family members who refused to quiet down at 10pm when Danny (and other nieces and nephews) was sleeping, which led to another serious meltdown. Or the people at church who rolled their eyes and made snarky comments when Danny had difficulty with the Father's Day presentation. So, here is a list of the things I wish everyone understood about SPD and about kids in general.

1. This is not merely a behavioral issue.
There is a reason my son sometimes acts the way he does, and it is not because he is a brat. Sure, he can be as bratty as the next kid, but often he is assaulted by sensory stimuli which his body is unable to process well, thereby making it impossible for him to cope.

There is a difference between a behavior tantrum and a sensory meltdown. When it is behavior, the tantrum is usually caused by the kid not getting his way, and it stops when you give him what he wants. When it is sensory-based, it is usually a buildup of overstimulation that causes it. You could give the kid whatever he thinks he wants, but it probably won't help. What does help (sometimes, though once this meltdown has started, it is almost impossible to stop it) is removing all sensory input that you can. Also, in my experience a sensory meltdown is much more intense. Some of Danny's meltdowns scared me because he actually seemed to be in pain. He howled like a wounded animal and couldn't be consoled.

2. Don't judge until you have walked a day in the life of a kid with SPD.
I wish I understood what it is like for Danny to navigate the world, because I would be so much better at empathizing and helping him. I try to remember that his life is hard. Imagine not being able to differentiate between harmless stimuli (like the wind blowing through your hair or the sound of the hand drier in the bathroom) and stimuli that needs to be avoided (like a bug sting or the heat of the stove). The harmless stimuli scares and bothers him as much as the harmful ones. His body in unable to differentiate. So, this means that he is often confronted with several sensations at one time that are troublesome and possibly painful to him. This makes it really hard for him to focus and it makes it much more likely for him to become overstimulated. Who wouldn't misbehave when dealing with a world that is so unpleasant?

Here's an exercise for you. Stop reading this and pay attention to ALL sensory input your nervous system is receiving. Listen for any sounds, including ones you wouldn't normally pay attention to, like the hum of the computer, the furnace or refrigerator kicking on, your kid humming in the next room. Pay attention to everything you feel, including your clothing on your skin, the feel of the chair you are sitting in, any breezes on your skin, etc. You get the picture. Imagine feeling all those sensations intensely, each and every one of them. Imagine not being able to disregard some of those feelings, not being able to ignore the unimportant ones and imagine how difficult your day might be if you had SPD.

3. Moms of kids with SPD are overwhelmed.
If you assume that a mom with an SPD kid is stressed out, most of the time you would be right. I am not whining here, but a mom has to plan and prepare for even the most benign outing with her kid. Going to the park? Fun for most kids, but I need to bring extra clothes in case Danny somehow gets wet so he won't strip down in front of the whole town, because wet clothes are unendurable for him. Also, I have to watch him like a hawk, because he is a sensory seeker which means he often wants more sensory stimulation, which he often gets in the form of running into people or jumping from high places. Other errands also have to be planned well. When Danny was younger, he could handle just one or two errands at a time, and some places he couldn't handle at all, like one grocery store whose flourescent lights really bothered him. Activities that most kids handle quite well and many parents take for granted are fraught with sensory landmines for the SPD kid. This takes its toll on the parents, especially when the child is just beginning therapy and hasn't made much progress yet.

And this doesn't even take into account all the therapy and special exercises, diets, and other activities most parents engage their children in. At one point, Danny was regularly seeing 4 different therapists, and all of them had homework for us to do with him. Now, he still sees an Occupational Therapist and a Speech Therapist and we do sensory integration exercises that the OT gave us a couple of times a week. It can all get a bit overwhelming, especially for parents who have their kids on gluten free/casein free diets and those who have their kids in extracurricular activities that are good for SPD, like karate or gymnastics.

4. Please just offer validation.
Advice can be welcome, but usually not when the kid and mom are in the middle of a crisis. I know it is second nature to want to help someone fix a problem, but it is difficult to take advice while stressed out. If you really have some advice you think could help, wait until things have calmed down and when the mom is less likely to be super defensive. But, really what would be much more welcome is some listening and validation. Don't blow off her concerns or give pat answers. Listen. Empathize. Ask what you can do to help.

5. If your help is refused, don't be offended.
Many times I have had well-meaning people want to help me and Danny when he is having a bad day. The problem is, much of the help most people offer is the kind that actually makes things worse for Danny. For example, once when Danny was super over-stimulated, a friend tried singing to him. This is something I used to try, too. As moms, we often sing to our kids to calm and quiet them. It is typically soothing. Not so for Danny. It is just more stimulation irritating his already raw nerves. So, if you have an idea that the mom refuses, don't take offense. It might be something she has tried in the past that didn't work.

6. Don't expect less of my son because of his disorder.
This may sound like I am contradicting myself here. Yes, Danny often needs some accommodations to help him be successful in some situations, but this doesn't mean he isn't capable of following rules or guidelines. He needs to be held to the same standards as other kids; he just may need some special help to meet those standards.

Stay tuned for the rest of the list. Coming soon.
P.S. Any moms out there with kids with special needs, what would you add to this list? Please share.


autismfamily said...

Great post with perfect examples. When Matthew was much younger we had to avoid Kmart in the summer due to their air conditioning. This was when he could sit in the shopping cart and during other times of the year he would look up at the big gray vents and duck.

Around this time the Vons grocery store started putting up these signs near the registers that hung down and my son would have to go around the other side so that he was not under these signs.

Also he would not walk on sidewalk cracks. I have severe eczema and cannot stand fabrics touching my skin and never tolerated turtlenecks or sweaters. My tags were cut out always and long before I had kids.

Matt started head butting me in the gut recently. We have a peanut ball he bounces on that is behind the couch and the weighted quilt is on the couch back so while bouncing he pushes his chin into it.

I tried to get him to vacuum the other day and he ran away screaming, but usually he plays with the cord and that is dangerous as he swings it around.

He wacks walls with his elbows all the time and gets under the doorway to throw his head back, makes me feel sick when I see him do it and dizzy.

I heard about epson salt cream rubbing it on their back before school and bed. I am going to buy some at kirkmanlabs. It is called magnesium sulfate.

I might try sports for him, not sure how but I always wanted to play tennis so maybe that is worth trying.

Feel free to link to my blog and thanks for the feedback on my sensory resources.

Amy Jane said...


This post is so well-written, and even though I feel like I am not ignorant about Danny's disorder, this really helped me understand better about specific issues he has. I'm so full of admiration for you right now! It was so great to see you, even if just for one day.

Anonymous said...

This is very well said, Patty! Great post. I can't think of anything I'd add.

I really applaud you for taking the time to inform as many people as you can about SPD. Kudos!!

mrsbear said...

I don't have anything to add. Although I don't have a child with SPD, I really think your doing a great job of raising awareness and articulating your feelings.

kia (good enough mama) said...

Patty, I LOVE this post. Especially the part about being a mom to a kid with SPD and what it's like. Thank you so much for writing this. I'm going back to my own blog to add in a link to this post.

Again, thanks for writing what I'm totally incapable of putting together right now. Thanks a LOT!! :)

a Tonggu Momma said...

What an excellent post, Patty! And thanks for sharing what you did on my blog. It's something I feel passionate about, especially since so many adoptive parents assume everything stems from attachment issues. That isn't always the case, as you well know.

Jade, Will and Illy said...

Thanks a lot for this post! I found you through goodenoughmama's blog and I have to say that you have helped me to understand what, exactly, sensory processing disorder is. Kudos to you for getting the word out and for articulating so well how you feel :) Have a great day!

lonestar818 said...

Excellent post, these are all things I wish people knew too. I love all the SPD posts you're doing, thanks for spreading awareness!

Anonymous said...

Great Blog.. I have been frustrated as well with the lack of "social" understanding, not just of SPD behavior, but SPD in general. In my area, Upstate NY, it is still so new.. and so many people are clueless. NO, he doesn't "just need a good spanking." I look forward to reading more of your posts, and have put your page on my blog too!