Category Archives: sensory processing disorder

our spd life: moving, life, and seminars.

15 Tuesday May 2012

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First of all, has it really been 3 months since I’ve last posted? Well, at least I have an excuse. Nothing like moving (twice, no less) to make one forget about things like blogs.

We’ve been in our new house for almost 2 months and on our island for almost 3. 837.7 miles from our former home and most days we don’t miss it. Well, it’s not that we don’t miss it because we sure do miss our friends, our school, kung fu, our beach, the Golden Gate bridge…it’s more like we are so happy and content being where we know we are supposed to be. The transition has probably been as good as it could possibly be, and we are all loving our new lives here.

Z is especially doing great. I guess gaining 1,000 square feet of house and over an acre of yard and forest has been good for him. We were pretty crammed in our old place. Which just made the walls easier to bounce off. Now he has room to run, room to swing, room to ride his bike, room to climb, room to go outside and explore. We still have all the issues we had before. Sleeping is still hard. Understanding boundaries with everyone else around him is a struggle. There is still a lot of bouncing, crashing, and yelling. We are still exhausted and have to make a point of working with him consistently through the day to keep him regulated. Which still doesn’t always happen. But, we really are in a place that is good for him and he is happy and thriving. We’ve had a number of evaluations at the developmental preschool and we are hopeful he will qualify for services in the fall. We meet (finally) with an OT in the city tomorrow and are looking forward to getting back into the routine of superhero classes.

In other news, 2 weekends ago I got to attend a Sensory Processing Disorder seminar. I spent the whole sunny weekend sitting in a classroom learning about the brain, nervous system, serotonin, sensory diets, and school related issues. It was amazing. Understanding (just a little bit) what is going on in his body makes a world of difference. Knowing that there is something “broken” or “off” with his system and learning how it can be “fixed” or changed left me with so much more understanding and hope. Hearing about all the ways to help hm succeed in school took away a lot of the fears I have for him. And, learning practical ways to help him through the day gives us so many more resources to help the whole family to cope. I’ll leave you with just one example.

We had known about joint compressions before, but I was reminded of it and how good they are for him. Last week I needed to clip his fingernails (which had really turned into claws) and, as usual, he had a meltdown and starting crying and trying to escape as soon as he saw the nail clippers. I sat him on my lap and spent about 5 minutes doing joint compressions. As I was doing them, I could feel him relax and practically melt into my lap. I then clipped all 20 of his nails without a struggle or peep out of him. Mr. D* was amazed. I was amazed. That has never happened before. It sounds crazy that such a small thing like clipping a child’s nails without a fit would leave me with so much hope, but it did. It also left me with so much hope that he will learn to adjust to life and he won’t spend it living in fear of everyday things. That’s enough to make a mama happy.

our spd life: z’s engine.

26 Thursday Jan 2012

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Living with a child who has Sensory Processing Disorder can mean a number of challenges throughout the day. One of the biggest challenges is to find a way to calm him down when his nervous system goes into overdrive.

One of my favorite phrases our OT uses when talking to Z is “it looks like your engine is fast/slow/loud/quiet/busy.” Any one of those things can describe how his body is acting at any given time. And it can literally change from moment to moment.

The amazing thing to me is that Z actually understands what it means. That understanding has made a world of difference on a daily basis. We have gotten into the habit of frequently asking him what his engine feels like. Some of his favorite answers are “loud” and “quiet” though we get the occasional “grumpy” or ‘sleepy.” When he is feeling loud or fast or grumpy, he is starting to be able to stop and think about what he needs to do to feel quiet or slow. Which is amazing. I can’t even describe how much easier it makes day to day life to have him realize that he needs to stop and calm his engine. When he realizes this, he’ll stop and climb into my lap and take big breaths while I rub his back, lie on the floor in turtle pose, or find some sort of soothing activity (like Legos or his bean box).

His engine is still revved up enough times each day that leaves Mr. D* and I exhausted and his brother and sister frustrated after being jumped on/kicked/hit/etc., but at least we are making progress. It’s the small victories throughout the day that make it all worth it.

our spd life: holidays

16 Friday Dec 2011

Posted by in holidays, sensory processing disorder, spd, spd tactics, z

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Ahhh…the holidays. We’ve been playing the Pandora Christmas station in the house and I keep hearing “It’s the Most Wonderful Time of the Year.” It’s supposed to be right? I usually love Advent. I usually love decorating the tree, baking cookies, looking at lights, seeing The Nutcracker with A, giving gifts, going to the Christmas Eve candlelight service. December is usually really great and filled with traditions and activities that we all love.  But, I’m going to be honest: Christmas isn’t even here yet and I’m ready for it to be over.

For starters, the past 2 months have seemed non-stop. Halloween…Thanksgiving…now Christmas. I’m exhausted. School has been busy. The routine of homework, packing lunches, getting to school on time, picking up the kids on time, play dates and shuttling everyone to activities is wearing me down. My RA has been flaring since I’m tired and sometimes stressed. Oh…and we have a kid with SPD.

I guess that technically this isn’t the first Christmas we have had a child with SPD. It is, however, the first year that we have been aware of it and noticed what is going on in his little body. It’s also, and this is the bigger deal, the first year that HE has been aware that something is going on at Christmas. And it’s been hard.

We were prepared at Halloween. We avoided the Halloween parade and traded trick-or-treating for an activity that he loved (staying home in a quiet house and passing out candy). It was great. Not overwhelming for him at all.

Thanksgiving was good, too. We were worried since we were at my parents and there were cousins, aunts, uncles, and Thanksgiving day guests everywhere. But, he did great in the extra space and thrived with everyone giving him focused attention and some structure. He loved wrestling with uncles and playing with Grampy’s marble run with his cousins and hanging out in a tent when it all got to be too much for him. For all our worrying, it turned out to be a really fun, relaxing week.

And then December came. I have to be honest again: I wasn’t prepared. We thought that all the fun activities would be exciting for him and that he would get a kick out of the tree and gingerbread houses and cookies and Santa and the Advent candles and everything else we do. The other two kids love it so why shouldn’t he? What I didn’t stop and think about is that all that is akin to overload for an SPD kid. From the night we put the tree up he has been in high gear. And since we are busy and exhausted, it’s been hard for us to stop and focus on what he needs. His sensory diet has essentially gone out the window and been replaced with noise and lights and sugar. And right now I’m feeling pretty bad about it. I mean, when I really stop and think about it, it makes sense that his “engine” (as his OT calls his nervous system) has been revved nonstop. Of course all the activities, errands, and decorations are overwhelming for him. Of course he sees the excitement that his brother and sister have (and know how to regulate) and is confused by it. Of course he doesn’t know how to handle all this extra input any other way than bouncing, yelling, and running away from us as soon as he gets a chance.

On our way to OT today, after running some errands (one of which involved chasing him down as he bolted out of a bookstore toward the parking lot) I kept thinking how much he really needed his “super-hero” class today. And he did. I could tell – more than any other time we have gone – that it was exactly where he needed to be. He was so full of ideas of what he needed (which he knows better than we do). So HAPPY. He spun in circles in the boat swing for 5-minutes straight, laughing the whole time. He climbed and jumped and pulled and then finally settled down to cutting and gluing and turned out a paper candy cane he was so proud of. Even though my mind was spinning thinking about the cookies I had to finish baking for school, it was so great to really stop and watch him be at peace for maybe the first time in a couple weeks. And a shout out to Karen, our amazing OT, who took time to talk to me about what he is experiencing and how we can help him. She’s great. Really great.

So, Z, I’m sorry. I’m sorry that my ideas of what the holidays should be have taken priority over what you need. I’m sorry that I have let myself get so busy and tired that I haven’t had time to stop and be with you and help you calm your engine. I’m sorry that I didn’t think about how overwhelming Christmas would be for you. I promise that for the next 9 days we’ll take it easy. I promise we’ll work on your sensory diet, take naps when we need them, do heavy and tactile work, and not run around doing endless errands or activities. I promise that while A and J are home on break we won’t watch TV constantly, but we’ll ride bikes, take walks, and find fun games to play that keep your nervous system organized. I promise that Christmas morning will be slow and relaxed, that we will make present opening last a long time and take lots of time to eat and play and laugh. I promise that we are all going to do everything we can to make the holiday season a good one for everyone in the family. I promise that we will try to make the first Christmas you understand a really great one for you.

Z‘s amazing candy cane. I think it’s the first piece of art he hung on the fridge. And boy was he proud!

our spd life: food

29 Tuesday Nov 2011

Posted by in sensory processing disorder, spd, z

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Food battles. Sigh. It’s no uncommon thing for parents. It’s a different monster for parents of SPD kids.

Being hypersensitive to, basically life, naturally includes food. Z has pretty much always been super picky. When we first fed him apples at 6 months he gagged and spit them out. It hasn’t got much better since, although we thankfully don’t have the gagging anymore. The problem, of course, is trying to figure out the difference between foods he just doesn’t like (or is being picky about) and food that he is sensitive too. When I say that he is sensitive to foods, it can mean texture, temperature or taste. It’s a struggle. For awhile he wouldn’t eat food that was hot or even warm. We seemed to have moved past that which is a GREAT thing. He hates all veggies except maybe spinach leaves dipped in ranch. He still prefers food that is cold and he really prefers food that is soft. Yogurt and pasta are his favorites. Fruit (especially berries and grapes) are also a sure thing. He also loves milk. If we let him, he would be happy having nothing but milk all day long.

So, the mission going forward is to make sure he is eating enough things that are healthy for him and to constantly offer him different textures and tastes. He’s much more of a snacker than a sit-down-and-eat-a-big-meal type of kid and we are OK with that. He’s been loving apples and natural fruit leather lately, which is pretty great because (besides being good for him) the textures provide extra sensory input. The other project is getting him to actually sit down with us and eat food. It’s hard for a kid who needs to be moving, or who may be overwhelmed with everyone sitting down at the same time. He was a no-show for our Thanksgiving dinner of 18 people. We went with it, though and got him some pie when he felt like emerging from the bedroom. That’s life with Z: never predictable. I actually think it’s a pretty great thing.

He’s healthy and growing like a weed, so that makes us feel better. As a super-picky eater myself, I have a little more compassion for him and know that he’ll be OK. We measured him last night and he had grown a whole inch in less than a month! After we marked his height on the wall, he measured Buzz Lightyear, who sadly has not grown a bit…

our spd life: the bouncies

15 Tuesday Nov 2011

Posted by in behavior, sensory processing disorder, spd, spd tactics, z

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It would make sense for me to say that the hardest part of having a child with Sensory Processing Disorder is the tantrums. Or, I should say, the extreme tantrums. I mean, they can happen at any time without warning, can last from 15 minutes to 2 hours (yes, the 2-hour tantrums have happened), and there is no consistent way to get him to calm down. Our poor neighbors.

It could also be the aversion to transitions. Any transition involves a major amount of drama. Putting clothes on? That means running around the house screaming “no.” Walking to the car? More no’s as well as an inordinate amount of time trying to figure out which toys must accompany him.

Both of those are hard. Exhausting sometimes. But, oddly enough they have taught us how to be more calm and patient with him. No, the hardest part of SPD for us are The Bouncies.

I’m pretty sure if you Google The Bouncies you are not going to come up with a definition as it is related to SPD. But, it’s an accurate description of what happens when he can’t regulate his nervous system. Technically, he is “seeking out excessive proprioceptive input.” As I (hopefully) understand it, it means his body is not accurately assessing the amount of input that is coming in, so everything he does he does harder, rougher, louder, etc in order to sense that input. He will literally bounce off the furniture. And on the furniture. And into walls. And crash into people, the dog, the floor, etc. With 5 people living in a small space, it’s hard when this happens. It happens a lot, by the way.

So, the trick we are finding out from his OT, is to regularly find ways to provide that input he is craving. It’s called “heavy work” and it’s amazing how well he responds to it. Pushing things, pulling things, finding safe places for him to jump, having him vacuum, using a weighted blanket, swinging, climbing and crawling over and around things, wrestling…the list goes on. We call it using his big muscles. He loves it and they are all great ways for him to organize his body. Since most of the things we do with him are normal kid activities, it sounds logical that he would be doing them anyway. But, he needs help in being able to do them in a structured way on a regular basis so The Bouncies don’t happen. When they do, we are starting to learn what he needs to calm himself. Doing some heavy work is good. So is yoga and deep breathing. He learned the turtle pose at OT last week and it’s extremely calming for him. He’s also responding well to sitting with his hands pushed together while doing circular breathing.

As hard as this has been for our whole family, I can honestly say that the blessings have outweighed the frustrations. Working with him in a deliberate manner has been a great way for us stop and enjoy playing with him. Let’s be honest: he’s the 3rd child and sometimes (OK. A lot of times) he’s left up to his own devices as we are trying to balance everyone and everything in our lives. But, he’s now getting a lot more focused attention from the whole family. How great is that? For all of us.

Baking bread. Using those big muscles to stir.

super z

17 Saturday Sep 2011

Posted by in behavior, sensory processing disorder, spd, z

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I love this picture for so many reasons. Z has a new haircut that was 7 months in the making. His backpack is full of his new cars that he got as a reward for getting that haircut. He won’t let them out of his sight. He’s rocking his new cowboy boots that he wears everywhere. And those headphones. I love them. Here’s the story about the headphones…

It all started with the tiptoe walking. Well, it probably started sooner than that, when he was a baby and was super antsy and easily unsettled. But, the tiptoe walking is what took us to his pediatrician. He walks on his tiptoes all the time which we thought was no big deal. But, we decided to double check. 2 pediatricians, 1 social worker, and 1 occupational therapist later, we found out that Z probably has Sensory Processing Disorder. The diagnosis just confirms what we have already known. He’s super sensitive to low sounds (hair dryers, hair buzzers, hand dryers, vacuums, blenders). He craves routine. He gets easily overwhelmed if there it too much going on. He can’t handle restaurants or grocery stores. He will only eat cold food. He’s terrified of getting his haircut. He has tantrums that can last a couple hours. He’s a horrible sleeper. He’s super quirky, but we love all of the quirks. (Well, maybe not the tantrums, but it’s just part of who he is.)

Yesterday he got these headphones. He already knows that he can put them on when he feels like there is too much noise around him. He is so much more relaxed already. He also got his hair cut. I don’t think there are enough words to explain what a victory this was for him. The last time we tried to just visit a hair salon, he went screaming out of it and collapsed on the sidewalk sobbing. Full on panic attack. His OT recommended a kids hair salon that we stopped by yesterday. This guy was amazing. Amazing. Z wasn’t super thrilled with it, but he tolerated it and was so proud of himself afterward. We also got him an indoor swing. It’s his new quiet place. He sits in it with his headphones and a book. It totally calms him down.

There aren’t enough words for how much I love Z. He makes us laugh. He has a crazy good memory. He’s always discovering something. He knows who he is. Life with him is never dull. He’s such a great kid. I’m so relieved that we finally have an idea of what is going on in his little body and that there is hope for him. I’m so glad God gave him to us. I can’t imagine our family without him.