In an earlier post, I wrote about Tanner being diagnosed with General Anxiety Disorder. The other part of his diagnosis was Sensory Processing Disorder (SPD), aka Sensory Integration Disorder.
If you’re reading this blog post, you are most likely a relative or friend and you probably have a child that is my son’s playmate. For Tanner’s sake, I hope you will allow me to share a little bit of what I’ve learned and how this disorder has played into my family’s life. And even if I don’t know you very well, I hope you will keep reading this post because SPD is becoming more common. I hope our family’s story can help you understand other children that might be struggling like Tanner.
I knew my son was sensitive to things, but I had never really heard of this actual condition before, even with my teaching degree and years of experience with kids. So this part of the diagnosis was not expected the way I had anticipated the GAD diagnosis. I’m a little dissapointed that our pediatrician did not pick up on it sooner. One of my sisters and aunts helped nudge me in the right direction, but it took hearing the actual diagnosis to really see how Tanner has SPD.
Unfortunately, this disorder does not have as much awareness as it needs, and let me tell you it is a BEAST of a disorder that everyone should know about. Unfortunatley, children that have SPD are often misdiagnosed as having ADD or ADHD, or they are labeled as “spoiled”, “shy”, “super controlling,” or “out of control,” and the child never really gets the help they need.
I was told by our therapists that a lot of Tanner’s anxiety is being caused by his sensory issues. Needless to say, I’ve been doing a lot of learning in hopes to help him! Here’s my own words what I’ve been learning…
SPD is basically when a person has a very difficult time processing and regulating many of his 7 sensory systems.
(Yes, instead of 5 senses, we actually have 7: Vision, Auditory, Smell, Taste, Touch, Vestibular, and Proprioception).
As humans, we recieve and process all kinds of sensory input everyday, much of the time without even realizing it. But for a kid or adult with SPD, it is not so simple to process everyday senses. People with SPD struggle so much to stay regulated that it interferes with many and sometimes all aspects of their daily life (and the daily life of the entire family). SPD also interferes with a child’s ability to learn and to be happy.
There are two kinds of SPD: Hyper-sensitive and Hypo-sensitive.
Hyper-sensitive, meaning overly sensitive, kids are easily irritated by sensory input. They percieve sounds, sights, smells, etc. stronger than we do, and they will often cry and fight until they can get away from them. They get irritated by certain fabrics and don’t like getting messy. They often hate spinning and bouncing, and may prefer to be on the ground. These kids are often mistook as being “shy”, “cautious” or “lazy”, but a main reason they act this way is to avoid the senses that make it hard for them to regulate their systems.
Hypo-sensitive kids, meaning under-sensitive, cannot get enough sensory input. These children are not sensitive enough to things that they should be sensitive to. They are constantly seeking more things to touch and get into, like mud, creams, and foods- the messier the better. They never really stop moving, they can often be found jumping, spinning and climbing much more than their peers. These kids are often clumsy and do not show much pain when they have hard falls or injuries. These kids are often called “dare devil,” “hyper-active” and “wild child,” but a main reason they act this way is to get more sensory input in order to help regulate their systems.
“Wait,” you might say. “My kid hates getting messy!” Or “Wait. My kid is always bouncing around! Does that mean he has SPD?”
Well, keep in mind that all of us avoid or seek certain senses to help regulate our systems. It’s normal for a child to hate something like tags on his shirt, or for a child to love jumping off furniture. The thing that makes a child with SPD is when there are multiple issues across multiple senses that display continual challenges for your child, and have caused you and the entire family to change their way of life.
Which is exactly what has happened to our family.
[If you want to learn more about SPD, here is one of many links that helps list signs and symptoms. I also highly recommend this book called Raising a Sensory Smart Child, which has changed the way I understand my son, as well as many of my students and even myself!]
Tanner has hyper-sensitive SPD, especially with the sense of smell, touch and proprioception. Some days, nothing bothers him and he is just as happy and go lucky as any other five-year-old kid. Other days, he is so bothered by his clothes, the cold air, the position of his hair, the glue on his fingers, etc. that every part of the day causes complete sensory overload, and he has one meltdown after the other.
- Hates tags on his shirts
- We have cut almost all his tags off
- Prefers to wear pajamas and sweat pants all the time because of the feel of the fabric; Really hates jeans, tighter fitting pants, and collared shirts
- He only wears about 4 outfits. We have taken him on several shopping sprees because he gets pickier and pickier about fabrics
- Gets super moody when I cook with unusual spices
- Sometimes I avoid cooking the food I want because I don’t want to endure a meltdown
- Hates getting his hands slimy or sticky; Avoids many types of snacks for this reason
- Can pick up on smells of spices from people’s clothing and doesn’t go near them because the smell overwhelms him
- Doesn’t like touching animals and is senstive to their smells
- Prefers to wear shoes smaller than his real size because he likes the shoe being tight on his feet
- Gets easily frustrated with art projects, especially if there is not enough time and if there is glue involved
- This is the main reason we stopped signing Tanner up for the music classes I teach. He simply got too stressed with not being able to finish the musical art projects before class ended.
- Stresses out about spills or dirty spots on his clothing
- Won’t walk bare foot in the grass
- Sometimes complains about the sun being too bright, even on cloudy days
- But doesn’t want to wear a hat or sunglasses because it will mess up his hair. So we just talk in circles on this one instead of just going outside to play.
- Often cannot make choices with what to wear. He does okay if we are in a good routine, but if it’s Super Hero Day, or if the weather changes, or if we are traveling, or if his favorite underwear is in the wash, then we are in for some panic attacks and meltdowns. Our therapist helped me understand why. Tanner finds security in knowing he is wearing proper clothes for the proper ocassion. If he is wearing what he feels are the right clothes, it helps prevent him from sensory overload. But how can he wear clothes for the proper ocassion if he doesn’t know what the ocassion is or what is going to happen throughout the day? The “unkown” causes him to shut down before he can even think of what to wear. He wanders around his room saying, “I can’t get dressed. What will I wear? I can’t get dressed,” for long periods of time, finding fault with every option I present. Bawling, kicking and screaming when we choose for him.
- Learning this about Tanner has helped me understand myself! I’m super sensitive to temperature, and have always had a hard time with dressing for surprise activities or packing for trips. If I don’t have the right item to keep me warm, then it is really hard for me to focus on anything else besides being cold. I get more irritable and not fun to be around, so it’s really important that I know what activities we are doing so that I can have clothes that help me stay comfortable.
- Gets upset when his favorite meals aren’t cooked the “right” way or when we have to change the menu last minute
- Last week, he had a meltdown for 45 minutes because I wasn’t able to thaw the meat in time for our sloppy joes. Finally he was able to come to the table to look at the chicken I made, and about 10 minutes later, he ate a few bites.
- Has long meltdowns when any of our plans change
- I’ve had to completly change the way I plan our days to help him know what we are doing, but also help him understand that it is not set in stone
- Gets upset with soggy cheerios, broken granola bars, slightly ripened bananas, etc, and refuses more and more foods that he used to like, usually because there is something wrong with the texture of the food. “I don’t like how it feels in my mouth.”
- Will not get in the tub if it’s just a few degrees hotter or colder than normal
- Notices that he is different than other kids at school, but not aware why. “I’m weird. I feel like a weird kid.” He can’t explain what he thinks is weird. I’m learning that he feels this way because he is noticing that others around him don’t struggle the way he does. Super heartbreaking.
- Washes his hands too often, and does not like to put on cream to help the blisters that are caused by the handwashing.
- I have to put the cream on him while he is sleeping.
- Randomly hits us at unprovoked times. We could not figure out what was going on in his little head. But it turns out this is also a sensory thing! It has nothing to do with anger management, power struggles or seeking attention. It involves the sense of proprioception, which is how the body senses itself. He (and many kids!) hits and bites because he needs help getting more deep pressure and deep muscle work.
- Often falls to the ground and says he can’t move. Again, a disregulation with the proprioceptive sense. The solution is to get him jumping on a trampoline or doing heavy work. Which is really hard to do when he is already disregulated.
- Often had tantrums during the first hour of our big parties that we hosted. I thought he was jealous of not having my attention, but now I know it is in large part because he was experiencing sensory overload.
- I have since changed the way we do parties to help him be happy. This was really hard for me the first time around because I like to have everyone over to the house all at the same time! But it has made such a difference in the way Tanner enjoys the festivities, so it is totally worth it.
- Church is often very hard for Tanner. I have now realized it’s because the different clothes and different morning routine are just the right ingredients for a rough day. Sometimes it only takes 20-30 minutes of being at church to get self-regulated. Other times, he doesn’t get regulated until after church is over.
If this list hasn’t convinced you that SPD can be a beast, then I should mention that part of the disorder is that the individual will have inconsistent reactions to the same things. So one day, Tanner loves the red shirt with a pocket. Then the next day, it’s his greatest nemesis. One week, he loves my Tandoori chicken. The next week, he won’t even come to the table because this time the same exact smell is too overwhelming. For several days in a row, making a list ahead of the day’s events helps prevent meltdowns. The next day, the list is the very cause of the meltdown!
One day, he wanted to wear his long-sleeve shirt under his t-shirt, but he knew he might get too hot, so if this happened, he planned to change in the bathroom by taking off both shirts and putting back on just the t-shirt. (Did you follow all that?) But Tanner was too afraid to wear these clothes because he didn’t think the teacher would let him change in the bathroom. So he concluded that he should wear something completely different. But then he cried and screamed because in his mind he HAD to wear that shirt.
UGH! He gets himself into these kind of conundrums ALL the time. It’s been something he has suffered with since he could express his feelings as a three year old.
He’s constantly fighting little battles like this within his body and head. I want so much to zap him with a magic wand, making all the worries and sensory issues go away!
At these very low points, he is so dis-regulated that he cannot be reasoned with, he cannot make choices, he cannot be motivated. He becomes a completely different person. His entire countenance changes.
It’s not who he really is.
It’s not my Tanner!
Before this diagnosis, Jeremy and I were helpless because we didn’t know why he was struggling so much. Now, I know why he struggles, but I often still feel helpless because the trick or tool that worked last week isn’t working this week! There are so many inconsistencies!
The bad moments do end, though…
He finally settled with wearing the two shirts to school. He agreed to stand next to me while we asked his teacher if he can go to the bathroom to change. And of course, as soon as I started talking to the teacher, he chimed in to explain everything himslef, with no problem.
There he is, my talkative, confident, articulate Tanner.
And after those four bad days in a row, we finally had a good day! Tanner found a way to be himself again. He played with his brother nicely. He got himself a snack. He tried all the new food that I made for dinner. He made jokes and danced silly dances with the rest of us.
That’s him. That’s my silly, musical, creative Tanner.
The journey of battling this disorder has just barely begun for us, even though we’ve been dealing with it for a couple years now. I still find myself feeling a wave of emotions about this part of the diagnosis. Regrets of how I’ve handled his overloads in the past. The pain of witnessing his pain. The frustration of helping others understand how much this sucks for him (and us).
Probably the most difficult has been the emotional exhaustion after trying to help him in his lowest moments.
It’s the good days and weeks (thank Heaven we have good weeks!) where I see who this child really is. My beautiful, happy Tan Man.
Jeremy and I have to hang on to these times where we can see Tanner’s true self, because during the hard days, it gives us hope to fiercely fight the disorder so that our son can be happy.
There’s still so much to learn, so much I’m not good at yet with helping him. But one thing I know for sure: helping Tanner has and will be much, much easier with God’s help.
And boy, do we need His help!