Tag Archives: sensory processing disorder

It’s buggin’ my ears


M: “Mommy, what is that?”

A: “What is what, honey?”

M: “It’s in my ears. What’s the noise?”

A: [Hears dead silence…] “Um, do you hear a noise?”

M: “Yes, turn it off. It’s buggin’ my ears.”

A: “It’s bugging your ears?”

M: “It’s in my ears. What is it?”

A: “I don’t know, bug, I don’t hear anything. I believe that you hear something though. If it’s hurting you, we could get your headphones. Do you want your headphones?”

M: “Yes. I need my headphones.” [Sits happily with headphones for 10 minutes]

People who have a sensory processing disorder do not process their sensory information, like auditory input, the same way people without a sensory processing disorder do. Sounds that don’t hurt us, can hurt them. It is not someone being sensitive, demanding or manipulative. It is someone trying to manage a difficult situation.



Sensitive Santa


A year ago we attempted to visit Santa twice. It was an awful experience, not just for Maddy, but for us as well. It was too much… too much everything. Our first visit ended with a Santa who was quite unhappy with us, and a comment from a stranger who felt that our struggles were because, “That little girl is just begging for some love and that mother is denying it.” This woman at least had the respect to not say this in front of me, unfortunately, she didn’t know she was standing next to Eric.


I’ll spare you the details of the actual day, but we ended up with a photo of a screaming, terrified Maddy with a grouchy Santa. As a parent, it was a totally shameful experience that left me questioning my behaviour. Why was it that I wanted Maddy to see Santa so badly? Did I really not know it was going to be so difficult, or did I force us to go because it was something that I wanted and I didn’t care what Maddy needed?

I still look at the photo from that day with mixed emotions. On the one hand, what’s a Christmas album without the classic baby/toddler crying with Santa? On the other hand, I know that Maddy’s crying was much beyond the typical crying photo, and was related to a host of factors that don’t impact most kids.

I wanted Maddy to have the same experiences that other kids would have – but, the thing is, I wanted her to have the experience that I imagined, not the actual one we had. The Christmas tradition of visiting Santa is not really a magical experience if it is an anxiety-provoking, traumatizing event with a very grouchy Santa.

We were so fortunate this year to snag a spot with Sensitive Santa. The Kitchener CTV News talks about the event here. It was an overwhelmingly positive day. I can sum it up by saying that they do their very best to reduce sensory input (dimmed lights, no music, Santa doesn’t ring bells, etc.), they mail a social story in advance (Maddy requested we read it at least 15 times before our visit this morning – it helps manage anxiety and provides expectations of what will happen), there are no waiting times, an area with blocks and colouring for the kids to enjoy, and perhaps most importantly – the staff and Santa are skilled and patient.

It is an entirely child-led visit, allowing the child to interact with Santa in their own way. When Maddy was hesitant at first, they encouraged her to explore, she walked around touching all of props. They then introduced her to a stuffed Mickey Mouse, and asked her to help Mickey explore. When Maddy wanted to leave the space, they let her take Mickey and we walked around and watched another child visit with Santa. When Maddy wanted to try again, they patiently waited until she was ready to get close to Santa. Maddy explored her gift and looked up for a picture. Santa watched her cues very closely, and spoke to her in a way that wasn’t overwhelming – pausing to allow her time to process, and prompting when necessary. We had filled out an information card in advance, so Santa knew exactly what to talk to Maddy about! We finished our visit with a high-five, and Maddy said thank you and Merry Christmas to Santa.

What struck me most, was that every child’s visit with Santa was completely different. Instead of every child being forced to fit into a prescription visit, the visit moulds around the needs of each child. We give Sensitive Santa a big thumbs up and encourage anyone who thinks that it is an event that their child can benefit from to give it a try.

Glowing fishing


We went fishing! Okay, okay, not real fishing… but it was real to Maddy. Bath time is a huge battle ground in our house. Not just a I-don’t-really-like-baths kind of thing, an epic, anxiety producing, meltdown causing, battle ground.

It causes enough anxiety, that sometimes the first thing Maddy says when she wakes up is “No bath,” even though it’s 12 hours (or more) from her bath time. She randomly talks about not having a bath during the day, sometimes perseverating on it for a half hour or so. It’s gotten to the point that Maddy is now afraid of Eric and I showering – and randomly says, “No mommy shower. No daddy shower.” She regularly cries now when one of us showers.

We know it’s anxiety. We’re working with our behavioural team, and a mental health counsellor who specializes in little ones to work through it. But, man, it’s tough. It’s tough seeing how anxiety provoking certain (and seemingly simple) things can be. Wide-eyed, terrified looks, panicked vocalizations, and an increased heart rate, that can ultimately lead to a completely rigid body and meltdown. Heartbreaking.

Hair washing seems to be one of the big causes of these issues. As a result, we really only wash Maddy’s hair once a week (unless we really need to because of a syrup incident, or something similar). We’ve tried putting a wash cloth on her back so her wet hair doesn’t touch her back…. not successful. We’ve worked really hard on looking up while we rinse her hair (a picture on the shower ceiling is quite useful)… not successful. We are really at a loss at what we can do to make the actual experience better.

So… if we can’t make hair washing feel better… why not make the bath tub more fun? It can’t hurt! A week or so ago we picked up a bag full of goodies to make bath time fun and special. Some of the things we got are oversized glasses that Eric and I will only wear during bath time. We bought special balls, balloons, bubbles, and fun purple goggles to see if Maddy likes them on. I’ve already started a new list of things to get: a baby we can wash in the tub together, and crayons she can colour on the walls with.

This week, we started with a magnetic fishing set, and glow sticks. The first night we started with the fishing set only. After we fished for a while, Maddy suggested that we wash the fish with soap. She soon realized it would be much easier to do if she got in the tub. She insisted she wanted to stand, but again, realized on her own if she sat down it would be easiest. Eventually it turned into a game of, “Can you wash your feet? Can you wash your elbow?” Maddy even asked me to wash her back for her! It was a huge success… until we washed her hair. I was tempted to skip it, but we had just come back from a weekend of camping, and it had been awhile. Mama fail.

Given the mama fail above, Maddy was no longer interested in fishing. I amped it up. I added glow sticks to the water and turned off the lights. I promised Maddy that there was no bath tonight, just playing, and she tentatively joined in.

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By the end of our fishing experience, I was sitting on the edge with my feet in, and Maddy was standing in the water. This time I didn’t ruin the experience with a hair washing.

Honestly, I’m not sure who will have the most fun during Maddy’s bath time now 😉

A whole new world


Since Maddy’s diagnosis we’ve been all kinds of busy over here making appointments, faxing reports, and doing intakes. A whole new world of opportunities has opened up with those three little words: autism spectrum disorder.

IMG_2180We had a multi-disciplinary meeting yesterday at Maddy’s daycare – an hour for everyone to come together and get on the same page. It was an overwhelmingly positive experience. We are so blessed to have an amazing support team behind us, who are cheering Maddy on every step of the way.

I was so humbled to hear Maddy’s daycare very openly and honestly tell us that they were confused, and just didn’t see it – without pushing any sort of agenda. All they wanted was to understand. It didn’t take long before they did. Our support team was able to explain in a much more articulate manner than I would have been able to. At the end of the meeting they told me, they understood, and their new understanding allowed them to see it.

I picked Maddy up today at my usual time. When I arrived, one of Maddy’s teachers started by sharing with me some of Maddy’s sensory quirks she had not really noticed before. Our meeting had given her a new lens and she was picking up on cues she had previously missed.

She went on to tell me that at one point in the day, Maddy was starting to become agitated (or, for those of you who are familiar with the phrase, her engine was running too fast). There were extra people around, creating a lot of noise and chaos in the room. Maddy’s teacher decided to try something we had talked about yesterday – deep pressure. She asked Madeleine if she’d like some squeezes (this is what we call them at home). Maddy said yes and proceeded to show her teacher all the places on her body she wanted squeezes (I know – amazing!). With tears in her eyes, the teacher said to me,

“For the first time, Maddy looked at me like I finally understood her.”

My heart just about burst into a million little happy pieces. We might be taking baby steps, but we are moving leaps and bounds.

Bean there, chewed that


We had a breakthrough tonight! It was SO exciting!

We have been working on some strategies to address Maddy’s oral motor struggles. We were warned that it takes a lot of work for slow progress, and they weren’t exaggerating. But, that means when the breakthrough happens it’s time to jump up and down cheering – and really, who doesn’t like cheering?

One of the strategies is – get ready for it – chewing with our mouths wide open. We tend to only practice this strategy at home alone. We show Maddy how we move the food with our tongue onto our back teeth. We use our words to talk about putting the food on our back teeth. Then we do big, exaggerated chewing.

Although we’ve been doing this for a long time, Maddy has really struggled with being able to move the food to her back teeth, especially small foods that move with little effort. Tonight, we had black beans as part of our dinner. Maddy kept putting a bean in her mouth, and when she would imitate our chewing, we could see that the bean was actually sitting under her tongue (though, she was having fun doing the big, exaggerated chews, imitating my sound effects and using her whole head to nod).

After we practice chewed for a few minutes, Maddy let Eric put his finger in her mouth to hold the bean on her back teeth. But, every time her teeth felt resistance, she would stop the biting motion.

We decided to take it to the next level. We excitedly had her watch the bean get all mushed when we would chew. The first time she watched, she gasped excitedly – the bean looked different! The next time Eric held the bean in place for her, she went for it. Maddy gave the bean a huge chomp! Fortunately, she didn’t give Eric’s finger a huge chomp 😉 Maddy immediately spit out the bean to examine it in full detail. She was a bit scared by it, but baby steps, er, toddler steps.

Maddy chewed a bean! Huzzah!!!


The 15 minute rule


Awhile back I mentioned that we were starting the SOS feeding program through our local public services. Unfortunately, they didn’t have enough children signed up to run the program, and the starting date was bumped… to today. We had our first session today, er, Eric did. Maddy is in the throes of strep throat so I stayed home with her.

It was great to get the first parent teaching session. We were disappointed to hear that there are still not enough children signed up for the group feeding sessions. They require at least four kids (but hope for more), as part of the success of the program is based on the environment – peer pressure, for lack of a better description. We will find out in the next week or so if they have enough, and if not, we will try again for this fall.

We did get a lot of good tips today that we are slowly going to put in place at home. The biggest struggle we know we’ll have with this is the planning required. Eric and I are fly by the seat of your pants kinda people, particularly when it comes to meals. We never plan meals in advance, and we don’t really have a regular menu rotation. We like trying new things, and Eric is especially good at preparing meals without a recipe. That is going to have to change, but I will share more on that another day.

We’ve already taken the first step of the program – I talk about it in this post.

One of the next things we are implementing is the 15 minute rule. Basically, that means that challenging meal times will never last more than 15 minutes. It’s up to us to decide whether or not the meal is challenging – and it’s based on the cues Maddy gives. If she is calm, and happily eating, it’s okay if the meal lasts longer than 15 minutes. On the other hand, if she’s agitated, upset, frustrated, or anxious, 15 minutes and we call it quits.

What’s the theory behind this rule? Basically, if a meal time is challenging and lasts longer than 15 minutes, the child will end up with negative calories. In other words, the child will burn more calories than they will consume. If there is always a preferred food item presented, 15 minutes is enough time for that item to be eaten. For Maddy, we know her preferred food items are pasta, oatmeal, waffles, risotto, and rice. These are also things she is able to comfortably eat with her oral motor challenges.

The 15 minute rule will be a big change for our house, but we’re ready for the challenge!