Sensory Processing Disorder
What kid doesn’t want to lick the spoon?
My kid doesn’t want to lick the spoon. Nor does he want to eat more than a miniscule amount of pudding at a time, or use more than the very tip of his tongue to lick ice cream.
What is sensory processing disorder?
Look, I’m no expert. I’m just a mom, but this is what I have gleaned. Sensory processing disorder (also known is Sensory Integration Dysfunction) is the inability to use information received through the senses in order to function smoothly in daily life. Therefore these kids struggle with their bodies responses to ordinary sensations, it’s like a pattern interrupt, it keeps them from being able to organize their actions and interpret the input. Also interfering with their ability to regulate their attention and activity level. Now my son is primarily over responsive and sensory seeking, he also has regulatory issues, which means once he gets going he can’t calm himself down. A child who has Sensory Processing Disorder sees the world as a scary, unpredictable place. One of my son’s coping methods is to try to control his environment.
Here’s the thing, and I’m gonna remind you again, I am not an “expert”, there are so many things that are/were going on with him that I didn’t even realize were a result of the SPD until I had an outsiders perspective. I just thought he was quirky, that some of the things he was doing were normal for a boy his age. I was wrong. It wasn’t normal for him to have to take all of his clothes often order to go to the bathroom, it wasn’t normal for him to line up all of his crayons before coloring (he actually rarely got to the coloring because the organizing got so important) It wasn’t normal that he would gag whenever he drank room temperature water. It wasn’t normal that he didn’t participate in any of the mommy and me classes we took, that he either sat on my lap silently or ran around the room often disrupting the class.
One of my son’s coping methods is to try to control his environment. You may think, how bad can that be? Well, sometimes not bad when it doesn’t involve people. Sometimes it’s just making sure all of the kitchen cabinets and drawers are shut tight. Sometimes it also means all of the doors in the house have to be closed. However, other times it means that all of the people in the room have to line up in a line, just so. You may not deviate from the spot you are placed in, sometimes you have to sing a song, or march in a line around the kitchen island. He has to orchestrate everything, as long as he maintains control of his environment, his environment can’t scare him. This might be cute to an outsider, but a 3 or 4-year-old should not run the show everyday, and needs to learn to feel safe when he is not the director of the show.
Let me stress this to you, so many things about SPD are fixable, if you even suspect your child has it, get your child evaluated by a pediatric occupational therapist. I would love to say ask your pediatrician. I love my pediatrician, but when I brought up some of the concerns I had, she asked me if it was interfering in his ability to function. Well, that was a tough call, and really not the right question. I mean, he was functioning, he was talking above his age level and eating (although in an extremely picky way) and walking. The thing is, if the behavior was not of concern to me, I wouldn’t have brought it up. She said he’d grow out of it. I was uneasy about that call, but she was the doctor. So it was almost another whole year before I had him evaluated. The event that made me go over my doctor’s head was when we started indoor swimming lessons. Isaiah loved the water and he loved to try to swim, but when we got to the indoor swimming pool, my happy-go-lucky child, silently wept as I coaxed him into the pool. He cried quietly the whole lesson. Lesson two was even worse, he clung to me so hard I had to agree to sit on the side of the pool where he sat stoically with tears running down his face. He could not explain to me what was wrong, but being the observant mom I had been forced to become, I started to notice a pattern in the environments he tended to have trouble in. The echoing noise in an indoor pool, the constant sound of running water, the humidity, the smells. It was all too much for him, I withdrew from class that week, and the same week he was evaluated by an occupational therapist.
Ironically, I already knew he had oral defensiveness before I knew he had Sensory Processing Disorder. You may find this impossible, but the truth is I had never heard of sensory processing disorder, and I did not know that what I called “his eating issues” were related to the other behavior I wondered about. When Isaiah was two, he was still eating pureed baby food exclusively. All of my friends kids were eating “people” food, Cheerios, pasta, bits of lunch meat you know “normal” two year old stuff. It was really hard to be the mom who still brought the jars of baby food to our outings. I don’t think any of my friends judged me, some were really nice and said, “you know it’s not like he won’t graduate high school because he won’t eat people food now.” But I knew something was wrong, and I wondered if I was doing something wrong. Luckily my older sister is a Speech Therapist, and when I finally talked to her about it I discovered this wasn’t normal behavior, but I could do something about it, and if I was diligent, he would grow out of it. Well that was the best news I had heard in a long time. And so the process began, I wish I could say it was easy, I wish I could say we saw results immediately. That was not the case, but I had a coach, I had someone to rely on to support me and help me trouble shoot. Most of all I was patient and persistent.
The best thing I learned was to never give up. Every day I offered him the same food he wouldn’t eat the day before, he didn’t have to eat it, but it had to stay on his plate. Everyday. Then one day he would pick it up and smell it, the next day maybe he would lick it. A couple of days later he might actually take a bite. It was work, it was trying, but slowly it began to pay off. Just to give you an idea of the time frame, Isaiah ate his first banana at 3 and 1/2, his first un-toasted bagel followed a little while after (still no toasted bagels), he had his first sandwich right around his 4th birthday. He still hasn’t completely integrated all of his new foods into his daily routines, we still have to be patient. It isn’t like a revelation, oh yesterday I wouldn’t eat a banana and today I love them! It’s more like yesterday I wouldn’t eat them, today I will take a bite. Tomorrow I will ask for one but only eat two bites, and two months from now I will ask for one but only eat half. He still won’t eat a whole banana, my sister’s 1.5 yr old would eat two whole bananas in 5 minutes flat if you’d let her! It’s like he’s constantly fighting an internal battle, his nervous system is saying “this is giving me the heeby jeebies!” but his cognitive sense is saying,”it smells yummy and tastes yummy and I really want to like it!”
Don’t Push too Hard
It is hard not to get frustrated, trust me I know. I remember reading that when a child with SPD gets overwhelmed they often want to be held. I read this section with tears running down my face, thinking of how many times my son at 2 or 3 would cry at the mall for me to hold him and I would keep on walking telling him to be a big boy, that he could walk. I felt so guilty when I read that, I felt like a bad mom, I didn’t understand what was going on inside of him at the time. Now I do understand, but you know what? Sometimes I still feel the same way. I feel like he “should” be able to control certain behaviors or reactions, even being as well versed as I am I still want him to “try harder”. But he can’t try harder, he needs to be taught coping skills, he needs to be given sensory input every day in a positive way that helps his body learn to process the input he can’t control. Knowing that your child has SPD is only the tip of the iceberg, and getting outside help is a necessary piece of the puzzle, but you are the one living with your child, and if you can’t help him get through the hurdles with love and patience he’s not going to get any better. You are the only one who can assure your child progresses and actually makes strides. SPD can get better, there will probably always be some sensory issues that your child has to deal with, but you will be amazed at the changes you will see.
What’s the bottom line?
I once thought Sensory Processing Disorder was fixable, I am not sure where I got that idea. It may have been a therapist, a book, a website. Trust me, I have done so much research on the subject that at this point I am not sure where the information floating around in my head has come from. I now know that operating under the assumption that you will “cure” SPD is a recipe for frustration. What I have learned is this, once in therapy your child will show great improvement. These improvements will make your life much more comfortable however there will probably always be some issues you can’t erase entirely. You may even decide it doesn’t matter that much if your child never eats pudding or yogurt, as long as he or she eats mostly everything else. The important part of that piece is that you should be the one to decide. This deciding should not be viewed as “giving up” as I mentioned early on, once upon a time my son wouldn’t eat anything but baby food, through patient persistence we eventually added many new foods. Now, for whatever reason we are still stuck on a few, I still offer them to him, but I am no longer actively trying to conquer those last two pieces. The Fact is, he is improved so much in the year and a half we have been in therapy. However, he still does better wearing noise dampening headphones in busy restaurants or museums. He still wants me to cut the tags out of most of his clothes, and we are still making strides getting our hands sticky. He may always need tag-less clothes and feel overwhelmed when there is too much background noise, and how bad would it be if he always wanted has hands clean when he ate? What I realize now, is SPD is for life, but the strides you make in early childhood are the ones that matter. You have to take responsibility for your child’s future, and get them the tools they need so they can be successful in school and in life. The thing is you can’t expect everything to get better over night. Be patient with your child, do what your therapist suggests, and try to remember, that your child is not doing this on purpose. Just that thought alone will probably change your family life 100%.
Where should you go from here?
You should probably start by looking for a pediatric occupational therapist, most likely you want a group of therapists because they will have the best facilities. A lot of pediatric therapy places offer free mini-evaluations. They are extremely valuable. If you find the right place, you will probably know just on the phone. The intake people know what type of questions to ask to make sure you see the right people. When they do the evaluation
they are always looking for very specific things and will be able to tell you right away if they think you are dealing with Sensory issues. Trust me, they won’t yank your chain either. A very good friend of mine was convinced her son had SPD and she went to the same place I take my son for therapy. She had an evaluation and they told her he was just fine 🙂 Don’t be afraid to just check, if you’re wrong you’re wrong, but if your right you have given your child a chance to live in a world that isn’t scary anymore! And by the way, the evaluation is fun! It’s puzzles and swinging on swings, maybe going down slides, coloring, playing with blocks…it’s kid stuff!
I also believe every parent who suspects their child has SPD or knows they do should be REQUIRED to read “The Out of Sync Child” by Carol Kranowitz. This book was a revelation to me. We were already in therapy when I started to read it, but it helped me understand what was really going on inside of him in layman’s terms. It really opened my eyes and helped me truly understand that almost all of the negative behavior we had seen was a result of his sensory issues. This does not mean a free pass it just meant to me that he wasn’t trying to make me mad on purpose!
These are some recent posts I wrote about how sensory processing disorder effects my life I will list them from oldest to newest so I can keep adding:
Rainy Day Balance Game This is a great activity for kids with Sensory Issues!
Some websites I like:
this site is great for general information and has a great questionnaire that has a lot of detail and is a good starting point if you need one.
This website has great clothes, they don’t have a lot of variety yet, but the clothes are super soft and tag free!
http://www.icdl.com This is a specific method for treating kids with sensory processing disorder, asperger’s, autism and other issues it is called DIR/ Floortime. It is highly effective and treats the kids on the kid’s terms, which makes it less scary.
The play project is similar to Floortime, it’s worth checking them out.
The AlertProgram helps children who have regulation issues. It is very effective with children who have reached a point when they can start to recognize the way their body feels when they get over or under stimulated.
http://www.americanapparel.com these clothes are not tag free, so I cut them out, however they are very soft and tight-fitting (slim, even if your child is slim, order a size up) which my son really likes. When clothes are too loose I think they are constantly touching him as he moves. When they fit closely, he registers the sensation once and then is fine.
As I find new great websites I will post them.
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