I never asked any of Emily’s doctors or therapists about sensory processing disorder. Not to avoid it; I truly had no idea this existed and over the last 17 years, we’ve just tackled every new challenges as they arised.

I don’t know if she has sensory processing disorder but she certainly experiences sensory overload.

You know your senses right?  

Sight 👀

Hearing 👂

Taste 👅

Touch 👋

Smell 👃

How do we overload them?

(From Wikipedia) Sensory overload can result from the overstimulation of any of the senses.

• Hearing: Loud noise or sound from multiple sources, such as several people talking at once or a loud fire alarm.
• Sight: Bright lights, strobing lights, or environments with lots of movement such as crowds or frequent scene changes on television.
• Smell: Strong aromas
• Taste: Spicy foods.
• Touch: Tactile sensations such as being touched by another person or the feel of cloth on skin

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What does this means for Emily?

Touch

My baby didn’t sleep well. Eventually, we figured that she needed to be held tight to fall asleep and needed that presence next to her to sleep.  Now it looks like a weighted blanket could have help with that but for us it was cuddles that did it. I literally wrapped myself around my 2 year old girl. My arm holding her arms, my leg over her legs and I held her that way for 60 uninterrupted breaths (in and out). The slightest movement or whimper would make me reset the counting to 1.

I often fell asleep before her…

Maybe she was counting my breaths too and wanted to be sure I would spend the night.

Emily doesn’t like to be touched by strangers. That’s a great thing but at the same time there is no pedicures or massages happening for her. Doctor appointments are awkward and she might require anesthesia for some basic check-up in the future.

She also can’t stand tags on her clothes or on her stuffed toys 🙂

On the plus side, she can now get her hair cut without wiggling and laughing her head off and she can set the water temperature in her shower on her own.

She can stand some crowds; for example at the hockey game while other crowds are impossible to manage.

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Sight

Emily struggles with her vision as her brain only uses one of her eye at the time.  I believe that after 2 surgeries and some exercises, her brain is sometimes using both of her eyes at the same time but this is still the exception.

The one thing that I thought was unusual was her dislike of wind / breeze outdoor and indoor.  Wind would make Emily cover her ears and hide inside. 

If an item was fixed (for example curtains) than it should not have moved… Ever!

For example, Emily would not tolerate a fan in a hot summer day. The breeze bothered her but even worst than the wind, the moving curtains appeared to be terrifying.  By the time she was 5, she would go around the extremely warm house and turn off fans and A/C.  We would turn them back on, close the bedroom doors to cool down the rooms where she wasn’t. We pointed the fans away form anything that could move and didn’t let them pivot.

At the same time, I would slowly point the fan directly at us on a low setting and played there with Emily. She slowly started to accept the indoor wind.

Now, Emily sleeps with a fan, on pivot, in her room.

Helium balloons or any balloons outdoor are freaking her out.  We’ve walked away from Canada day celebrations with our crying daughter on many occasions because there was just too many balloons. Birthday parties are scary because she anticipates balloons. We didn’t eat at East Side Marios for years as Emily remembered them giving numbered balloons to people waiting for a table.  

It’s not that she’s afraid of the balloons popping because balloons on the floor are fine but the floating ones aren’t. Most days, one helium balloons is all it takes to ruin everything. Over the years, I’ve taught her to tell the balloon that she is not afraid and make a silly face at it 🙂  sometimes it works!

I believe this is all related to her vision and how her brain processes what she sees.

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Hearing

This is an interesting sense for Emily as her hearing is phenomenal.

In fact, we were told by a specialist when Emily was still in elementary school that her hearing is almost too powerful.

Everything is coming at her at the same strength.

Can you imagine that?

It explains so much…

Emily couldn’t stay at the movie theatre long enough to finish a movie so we brought ear plugs and a blankets to help her block some of the sounds and some of the pictures.  She can do it now without the buffers 🙂

Live hockey games were difficult too. We had to leave before the end of the game on many occasions so we brought the ipad, some toys and noise cancelling headphones.  It helped her enough that she slowly started to enjoy the games.  She’s good now!

Weddings and christening are still impossible.  The echo in churches is like torture to Emily and the church bells send her into a full panic.

Static on the radio will make her cry.

A combination of low light and loud music really bothers her.
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Taste

This one is not a problem.  She loves tasting food and has her own taste. Spicy food is not something she likes but I am not sure I would associate the dislike to a sensory processing issue. I think it is just a dislike like many people have food they don’t like!

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Smell – All good here too!
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Sensory overload – What does it looks like for Emily?

A couple of weeks ago we went to a wedding ceremony.  It was in a dining room at a golf club. Emily was fine with the crowd, we sat at a table in the back of the room, easier to get up and move around if needed.  The bride walked in and the vows were exchanged.  She managed well.  A buffet was set-up at the back of the room which was near our table.  People started migrating our way, music played in the background, people mingled and talked and in a split second, it was no longer fine.

I saw it 30 seconds before Emily said something.  I was chatting with a friend when I looked at Emily and realized she couldn’t stand it anymore.

By the time I was back at the table, Emily looked at me with tears in her eyes and asked if we could go.

We knew she wouldn’t be able to stay long but we wanted to take her and let her experience the sensations associated with this type of celebration. We were ok with the fact that we would have to leave early.

I told Emily that we needed to stop by the bride and groom to congratulate them before leaving.  She agreed but she was struggling.  She barely managed to tell the bride how beautiful she was through her tears.

Our friends understood that Emily was trying but was getting overwhelmed.  We said goodbye and left.

Most people think that once we leave Emily is fine!

Some people might even think that Emily is manipulating us!

Wrong!

She cried while we walked to the car and softly cried while we went to Dairy Queen to get some ice cream.

She was not herself when we got home.  We got in our pyjamas and cuddled on the couch while eating our frozen treats.

At bed time, Emily went to bed but 30 minutes later she was up and asking me to come sleep with her as she was having bad dreams.  I laid down next to her and held her tight while chatting gently and singing lullabies.  It felt like a least an hour went by before she fell asleep.

We stayed at the wedding ceremony for 1 hour and 40 minutes and it took Emily closed to 3 hours to calm down from the sensory overload she felt during that time.

I have a theory that Emily wants to overcome these feelings so much that she pushes herself beyond her own limits. She’s a fighter!  I believe that she is trying to overcome the feelings so that one day she might be able to go to the birthday party with balloons in a busy restaurant, go to the school dance or to her grad celebrations next year.

She tries so hard that by the time I see that she is overwhelmed, it’s too late.

I have many more stories where my girl just fell apart because she couldn’t handle her surroundings.  We’ve given her tools and introduced those sensations to her in smaller dose to help her manage them.  Some we were successful and others we continue to work at.

None of these were quick fix and sometimes, we walk into a restaurant, a special event or a boutique and I know she will not be able to process the atmosphere in there so we walk out.

I have learned over the years that she is not doing this to upset me, she just can’t handle some of these situations… Yet!

I push her hard but I continue to see her pushing herself even harder and this is amazing, my girl is strong and determine to better herself and grow.  

#TakeThatCriduChatSyndrome

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