“Sensory” is quite the buzz word in early education these days. Maybe you have heard of Sensory Processing Disorder. I used to think that all it involved was kids not liking certain sensations on their skin, like squishy things, or wet things. It’s actually far more complicated.
My kid didn’t fit into THAT category! Phew!
Then, last summer, things went south for Loopy.
He became fearful of public situations. Total panic.
He acted like a caged animal during bath time. Incredibly dangerous.
He lost it during any kind of transition from activity or place. Especially waking up or changing clothes.
He didn’t want to do the things he used to love. He wouldn’t even leave the house for ice cream.
Our little guy was miserable and so were we. A million causes were running through our minds. The terrible twos… Allergies… A scary experience… Night terrors… New baby brother and new house… It’s just a “kid” thing…
But eventually my mom convinced me to have him evaluated by an Occupational Therapist (my mom is also in that line of work.)
She said our son had vestibular (inner ear) sensory issues that caused gravitational insecurity. It also effected his ability to distinguish background and foreground noise.
Now his aversions started to make sense. Bath time was hard because he felt like he could slip and he hated tipping his head back. Public situations were scary because he couldn’t always hear mom’s voice over the background noise. Playgrounds were no fun any more because his body seemed out of control.
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The O.T. told us that Loopy tries to regulate all this input by seeking strong, firm, proprioceptive input. What’s that? It’s the sense that is tied to joints and ligaments. It gives you body awareness, even when holding still. It makes perfect sense that he’d desire that if he had gravitational insecurity.
This manifested itself in many peculiar behaviors.
Remember, he seeks strong, firm, pressure and jarring movement.
Loopy loved to bounce. The kid was ALWAYS jumping up and down.
He loved to crash into stuff. It hurt me. Why didn’t it hurt him?
He had started biting his nails. He had started chomping on toys all over again.
He piled every blanket and every stuffed animal on top of himself despite waking an hour later soaked in sweat.
STILL I was a skeptic. I felt that every kid in the world could be diagnosed with SPD.
The O.T. suggested we give Loopy very firm back rubs as well as a brushing technique called the Wilbarger Brushing Protocol. She advised strong hugs. Have him do “heavy” work. Nothing out of the ordinary, just implement it into daily life.
Huge difference! I still have a hard time believing that something so simple could have such a big impact on him. But they have. Most of his fears have been conquered. Bath time is easy. He loves being outside again. He’s not as fearful of heights.
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| Look who’s loving a bounce house! |
But I haven’t been as consistent in getting him the proprioceptive input he needs, as of late. I thought he was just getting enough naturally, but maybe not.
Transitions have gotten very hard again. Whenever he wakes, he throws a fit and can’t communicate what he wants. He keeps saying “no” to everything. Things that are mutually exclusive! “I don’t want to go to the bathroom!” “I have to go to the bathroom!” “I don’t want to go to the bathroom!” And back and forth and back and forth.
It’s like he’s trying to deny reality. It’s heartbreaking to watch.
So we’re having setbacks. We’re hoping to get him reevaluated and also test him for any food allergies. I’m wondering if they could be causing congestion that is further aggravating his inner ear (vestibular) problems.
Loopy is such a blessing to our family and I love being his mom. It’s been such a refining process for me. I wanted to parent in a certain way and have certain kids. I had this image in my head.
But there’s just no room for me to cling to my selfish ways and still love him the way he needs me to.
Do you have a child with SPD? I would LOVE to read your experiences in the comments!
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Boasting In Weakness: Writing this post was emotionally jarring for me. I’m just gonna count it as my transparent moment. Cool with that?
Julie is a frazzled mom of three tornadoes. As a dorky second-generation homeschooler, she writes about learning and play, natural living, special needs parenting and matters of the heart. She serves an astounding God that radically saved her.
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Jeanette says
Hi! It’s been interesting reading along and seeing the discoveries you are making to help your son. My 7-year-old is autistic – he was diagnosed with high functioning autism at age three. Autism almost always comes with sensory processing disorder. It can manifest itself in lots of ways, but I definitely related to your post. When my son was first diagnosed, he qualified for several sessions with an occupational therapist and physical therapist. Those sessions were so helpful! We did the brushing also as well as many of the other things you mentioned, and they helped tremendously. When insurance no longer covered the majority of the cost of those appointments, we sadly had to stop the sessions. I tried to continue a lot of it at home, but life got crazy and he seemed to be doing okay, so…. Anyway, long story short, a few months ago, I started seeing a lot of issues with him, most notably low muscle tone and several sensory and fine motor issues. I pushed hard for the pediatrician to refer us to the therapists again, and after a lot of hoop jumping and tons of paperwork, he is once again approved for physical and occupational therapy. I feel bad that I let it slide, but I also know that disorders can change in a child as they grow older, so there’s that. Anyway, be encouraged. Keep doing what you are doing and reach out to whatever help you can get. 🙂
Julie says
Jeanette, thank you for sharing your story. Yes, those with autism often have SPD. That fear of course ran through our minds as well. I’m glad you were able to get some therapy sessions. Did you go through the public schools? We’re having a heck of a time getting insurance to cover anything. I’d love to get more professional help, but even with insurance, it’s impossibly expensive.
I totally relate to the guilt of letting things slide when things are going well. Thank you for your encouragement and right back at ya! God hand picked you to be his mommy, flaws and all. He’s blessed to have you!
PS I’m gonna have to start following your blog!
OneMommy says
We are in the process of trying to get an OT to evaluate our son. Every story like yours helps me understand him a bit more. Thank you for sharing this!
Julie says
Glad you found it helpful! Would love it if you checked back and shared your experience once you finish the evaluation. We can all help each other! Best of luck!
Emma @ P is for Preschooler says
How great that some simple things were able to help your son. Doing them again will hopefully help him the same way it did the first time. My daughter isn’t diagnosed with a sensory disorder, but at 5 she seems to be bothered by more things, like bulky jackets and seams in clothes. I enjoyed reading your story – thanks for having the courage to share it with us!
Julie says
Yes, we’re trying to do the same things but doesn’t seem to be working as well. And his symptoms are somewhat different this time around. I hope your daughter feels comfortable soon. It’s hard.
Mrs.Momof6 says
Hello,
This is the first I have come across your blog. I want to tell you that I completely understand your situation. We have endured all of those same fears/anxieties, etc. I also want to tell you, that the OT’s therapies do work, but that there is another way to find complete freedom… With our daughter, we used the GAPS protocol started at age 3, only 1 month later she was verbal, and less anxious. By age 5 she no longer qualified for the SPD diagnosis. She also no longer needed to strictly adhere to the diet. By age 6 she was COMPLETELY normal, eating whatever she desired without consequences. No fear, no anxiety, no crashing, no chewing, no screaming meltdowns, no nothing. She’s NORMAL. She’s 7 and we have had to eat a pretty bad diet lately, but she has had no ill consequences.
I say she is cured.
I just wanted to share, because what happened for us was nothing less than miraculous, but it happens to others too, and if you are interested I could point you in the direction we walked. I hope you and your family find the right path for you.
God bless,
Meg
Julie says
Thank you so much for commenting, Meg! Wow, what an incredible story! Praise to God for healing your daughter. I’m assuming you’re talking about a GAPS diet? That’s very intriguing. I was convinced that my son had a food allergy, especially because he did better as an infant after I eliminated wheat from my diet while nursing him the first three months (after that, it didn’t bother him). So we just recently had him tested for allergies. Nothing. Nada. I couldn’t believe it. We still strive to eat all natural/organic since I’m still suspicious of dyes and artificial crud that wasn’t tested for. Any thoughts? Is the idea that it’s an allergy? Or everyone, no matter their allergies, would benefit? I think it’s great that it doesn’t have to be a permanent change. That’s extremely encouraging!
Ashley says
Love this. Thank you for sharing your heart, the reality of life, and your little with us. As you know, 2 of my littles struggle with SPD (though boy child with boy child it may be a symptom of the severe anxiety). I have seen the same things happen for us too. We get into a groove of techniques at home, incorporated into life. Kind of. And then life picks up speed and something has to give. And sometimes it’s all that extra time. I think they’ve learned ways of incorporating it into their day. And they have. They’ve made amazing strides. But they can’t do it all on their own. So we fall back. We have hard episodes. Again. I remember how hard life was. Again. And we start. Again. It is so hard. Thank you for this post and your vulnerability.
Julie says
It such a relief to know I’m not doing this alone! Thanks for the encouragement friend! Hang in there! You’re a terrific mom!
Esther says
Wow, this is so interesting. My daughter just turned 7 and has had some of these same issues on and off for as long as I can remember. My next step is getting an eval. Our biggest issue right now is anxiety, and man, it’s rough. I am not sure exactly what’s going on, but so much of what I’m reading about sensory issues seems to line up with her behaviors and struggles. Thanks for sharing your personal story – I can relate to the emotional nature of writing about this.
This right here completely resonated with me: “I wanted to parent in a certain way and have certain kids. I had this image in my head.” – I had this exact conversation with a friend whose son has autism recently and we both shared the struggle of feeling like your child is not who you expected him/her to be. But by God’s grace, they are the incredible gift that He had given us.
Julie says
Sounds like we’re kindred souls! Keep me updated on your daughter! I hope you find solutions soon!
Tia says
This is an old post, but I also want to share my story in hopes it might help someone else. My son is not autistic, but developed severe anxiety and even aggression, esp. with anything related to a transition just before his 4th birthday. He suddenly became afraid of playground equipment. He complained of smells and anything that took his feet off of the ground created terrible anxiety – flight or fight behavior. There were times when I couldn’t even get him to transition from one room in the house to another. He didn’t want to go outside, even if it was to someplace fun, and getting him back inside was equally stressful. Stairways were a nightmare. I took him to doctor after doctor and everyone said it was “anxiety”. But I couldn’t understand why he had extreme anxiety some days, but little to none on others. It didn’t make any sense. At the same time of all of these strange behaviors, he also suddenly developed allergies. It was as if it happened over night. When I put him on an elimination diet, the allergies didn’t go away, but the behavior problems STOPPED. I took him to an allergist, but her findings were different than my elimination diet findings so I stopped the elimination diet and instead put him on allergy medication , got some dust mite coverings, and of course took him off of the foods that he tested positive for. We struggled with ups and downs from there. When we changed house his behavior got so bad that he was hurting himself with head banging. Finally we took him to a new doctor who diagnosed him with Sensory Processing Disorder. After this everything began to make sense. From that diagnosis I researched online and learned that many children improve with a gluten free / casein free diet. Because he had done better when I had put him on an elimination diet when he was younger I was optimistic that I would see some change, even if it was just subjective. The change I saw however was miraculous. It was like night and day. His sensitivity to these foods didn’t make any sense to me. He could eat fries at home, but if he had a french fry at a restaurant he would react with anxiety and aggression because the fry was cooked in the same oil as breaded food. The same was true for dairy. If I made gluten free cupcakes but sprinkled a few chocolate chips with dairy in it it would result in the same behavior. I couldn’t understand WHY these foods were suddenly causing such drastic reactions when he had eaten these foods when he was younger with no problem at all. This puzzle led me to information about the GAPS (Gut and Psychology Syndrome) diet. For my son THIS was the answer. I cannot recommend this diet enough. Please listen to the author, Dr. Natasha McBride, on Youtube and please read her book.