Sunday, August 25, 2013

Sensory Processing Disorder is Part of My Story

This is a blog post I shared on one of my other blogs, but I seem to have a wider audience at this blog, so I wanted to repost it here, in hopes that it may help another SPD parent.  (This was originally written in August 2012.)  We are not experts on SPD, just parents learning as we go.  Please see a licensed professional to learn the best ways to help your SPD child.

It's been a while since I've been actively studying SPD and how it affects Caleb, specifically. The developmental pediatricians we saw, diagnosed him with Clinical Anxiety Disorder. And even though they didn't specifically diagnose him with SPD, the first book she recommended for me to read was "The Out of Sync Child," by Carol Kranowitz (a book all about Sensory Processing Disorder). I had already read it. That's why at the time of our appointments, the doctor was so impressed with how much I already knew and how many suggestions that she gave to help him in the situations he often melts down in ,we were already doing. But despite all the "sensory diet" activities we were trying to fit into our daily routines, we were still having issues that didn't seem to be getting any easier or better, without a TON of work on our parts. We opted to try anti-anxiety/anti-depression medication, and truthfully it has helped. It's helped Caleb to feel better about himself, have more self confidence, be more outgoing in public situations and with people he doesn't know very well (interacting with his new teacher for instance by talking and carrying on conversations . . . this he wouldn't have done before until after months of getting comfortable with her). The medication has also helped Caleb to think more clearly and logically . . . that is once he is calmed down. And it has helped so that he calms down quicker when he does go into a "fight or flight" reaction when he is in sensory overload. It doesn't, however, completely eliminate the situations in which he can easily go into meltdown reaction. Also, we had increased his dosage because we saw some more of the panicking and anxiety reactions occurring more often again, and we and the doctors thought perhaps he needed a higher dose of the medication to help regulate him. However, when we went up from half a pill to a whole pill, he started going to the opposite end of the spectrum and being hyper, impulsive, couldn't sit still, etc. Over the course of the past several weeks we have decreased his dosage back down to half a pill, and it has helped some with the increased hyperactivity.

But the changes in all of this comes at a hard time anyway . . . the start back of school. New situations, new changes in routine, new people, new environments . . . these are the things that Caleb can have trouble with. And what I've recently learned in another book I've been reading about SPD, is that Caleb's sensory signal he seems to have the most issues with is called, "Self Regulation" and also "Proprioception." In this book I've been reading, "Understanding Your Child's Sensory Signals" by Angie Voss (Kindle edition 5.99), it kind of reads like a helpful handbook . . . when your child is having trouble with _____, then this is the sensory signal they're having trouble with, and here are some things you can do to help them during this time. Today, after a meltdown at homework time about Ethan finishing his reading before him and getting to go play with a friend before him, he was in his "fight" stage of crying and being so focused on the fact that he wouldn't get to play at the same time, that he couldn't reason that all he had to do was finish his reading and get focused on getting it done and then he would be able to play too. He couldn't get to that second logical thought though, so I took him in the bedroom, made him jump on the trampoline 30 times (all the while him crying, but slowed down as he jumped). I couldn't talk or reason with him during this time. The only thing I could say was that he needed to jump so that he would calm down, and that jumping would help him to calm down. I then tried creating a "Pillow Cave" for him, a suggestion from the same book.

-Pillow Cave - helped him go under my comforter and sheets and piled pillows up on top of him and around him, and told him he was in the "Pillow Mountain" to calm down. I told him he didn't need to think about anything else or talk about anything else right now. We would talk about it (whatever consequences or actions are needed) after he has calmed down. Once he has calmed down, you can usually then talk to him about his behavior and ask him questions about how he reacted and behaved, was that good behavior or bad behavior, what the consequence will be for the bad behavior, and what the plan is now to move on from this.

The Pillow Cave actually helped him to calm down a lot. And I was able to then logically talk him through the situation, talk about what his consequence was for not following directions and reading when he was supposed to (the consequences and responsibilities still get done, not excused), and then we came up with a plan together on how to move on from here.

It's a lot of extra time and work for me, in that during a meltdown of what appears to be him misbehaving, or disobeying (and sometimes he is with his actions), instead of focusing right then on the behavior and the meltdown, I have to focus on the fact that he is in sensory overload at this moment and my focus has to be to get him to calm down. Then, I can talk to him. It takes a lot of extra time and patience that I don't always think I have the time, strength, or energy to deal with. I find myself thinking, "Why can't he be just like a "normal" child that when I say he has to do his reading before he can go play with a friend, he may whine or complain a little, but then accepts in and gets the task done . . . instead of turning it into a huge meltdown?" I found myself forgetting on the first day of homework that the calming down part needed to be my focus, and so I lost it. I yelled at him, I took him to time out in his room (another thing that makes things worse for him and increases the severity of the meltdown), . . . I had a bad "Mom moment" for sure! I think I was partly hoping that with the success we had seen with his medication at the end of the school year last year and over the summer, that perhaps I wouldn't have to make these "sensory diet activities" a part of our regular routine. Who has time to do all these things anyway, with 2 other children, working part time, and trying to maintain a household I thought?

But I've done some soul searching and praying in the last few days and realized that just because he takes medication, it doesn't erase the issue he has with SPD. There are no medications for SPD, only accommodation and understanding. I am still going to have to make these accommodations, and stay on top of providing these sensory outlets for him so that the meltdowns WILL BE FEWER and so that he can continue learning things that help calm him down. One day, I pray he will be able to Self Regulate himself, but so far, only 7 months or so into really learning about this and how it affects him, and him only being 6 years old (almost), I can't expect him to be able to do that. My understanding and patience has to remain and be accepting of the issues he struggles with. It is so hard to not think in my mind that he is acting and behaving this way on purpose, just to make my life hard, or just to call attention to himself . . . but when he is in a calm state, I hear the true feelings and thoughts of his heart, and he doesn't want to react and act the way that he does. He doesn't want to feel out of control, overwhelmed, and acting badly.

So, it is with a new understanding (again) that I will try to face my routine each day with him . . . especially homework time. The hard thing is that the issues he struggles with for SPD don't affect him at school (well they do, but silently). He is not a discipline problem at school. It's like he flips a switch and retreats into a shell at school, being quiet, following all the rules, etc. So, why then do the meltdowns just occur at home? The developmental pediatrician says it is because that is where he feels the most comfortable, able to be himself, able to let out all the feelings he's stuffed in all day during the day at school, and then he lets them out in inappropriate ways at home.

So, some things we have found that help Caleb specifically are below. (See more ideas on pg. 32 of attached PDF book - "Your Essential Guide to Understanding Sensory Processing Disorder" by Angie Voss) It's kind of like we have to make him do a circuit workout of exercises to keep his brain in balance. And that's hard to remember to do. But I am going to try to be committed to doing these again on a regular basis, so that his nervous system and neurological system will be more balanced.

-Jumping up and down or on a trampoline at least 30 times

-Doing push ups (on ground, or on wall)

-Hanging from monkey bars (with adult assisting so he doesn't fall)

-Standing on his head (helping him to have his head inverted/upside down)

-Putting books in a backback and having him walk around with it through an obstacle course or up and down stairs (heavy work/lifting work)

-Using an exercise stretch band to put around his feet while sitting in the pike position with his legs out in front of him and pulling back and forth with his hands/arms

-Crab walks (heavy muscle movement)

Some other great resources and books I'd recommend on understanding Sensory Processing Disorder are below.

"Raising a Sensory Smart Child: The Definitive Handbook for Helping Your Child with Sensory Processing Issues" by Lindsey Biel and Nancy Peske

"The Out of Sync Child" by Carol Kranowitz

If we do our best to understand why Caleb acts the way he does sometimes, and do our best to provide these sensory exercises and outlets, hopefully we will begin to see more improvement and less meltdowns and out of control behavior. It takes a lot in changing the way that we think about things, about traditional discipline methods, about shifting or stopping an activity that is not working or one in which Caleb is not handling well, and being willing to try making a "Pillow Mountain" with him, or suggesting he do 30 jumping jacks at a time that seems inopportune. But that's what we have to do sometimes . . . and I've found that when I take the time to do these things, it really does help.

It is still such a hard thing to deal with as a parent, but one of my friends encouraged me recently that perhaps I would be able to one day encourage another parent going through this with their child, and offer suggestions or ways to help them from what I am learning now. This is a part of my story as "Mom to Caleb" and I have to accept my role in this. I am continuing to pray for God's strength each day to learn more about SPD, and ways in which I can help my son.

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