Making Sense


It’s well documented that children with additional needs often have sensory issues.

For many Sensory Processing Disorder is a very real diagnosis.

Many moons ago when Evie was a couple of years old, we noticed that she would lick and chew on everything. We put it down to teething. It continued as she grew.

We questioned professionals about various things that worried us. We couldn’t go to parties or carnivals, restaurants or switch the Hoover on or dry hair without a full on meltdown occurring. She would flail and scream and cover her ears, lash out, bite and flop to the floor. She had no control over her actions. This behaviour was no tantrum….

All perfectly normal we were told. They shrugged their shoulders. We persevered, took a deep breath and asked if Evie had autism. “No” they said.

Yet we knew, that her reactions weren’t average. That her panic and behaviour was different. I sought advice from doctors and charities. I researched over and over again. I saw other children with DS managing in situations which made Evie meltdown. I knew then that there was something else, something more.

And then I saw this on a Facebook page…

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It was as though a light had been switched on. It suddenly made sense. Our daughter had sensory processing disorder – SPD.

I asked her OT (that’s where you’re pointed at to ask for help). She knew nothing (unsurprisingly in her case 😳) except recommended a book. I bought the book. I read it from cover to cover. The Out Of Sync Child became my new favourite book. It was as though I was reading a manual on Evie’s behaviours.

So many things began to make sense. The things that used to frustrate us….

the chewing (she’s an aggressive chewer – all toys are bought with that in mind. Poor Woody from Toy Story has one finger left, a rather interestingly placed finger between you and I), Miss Rabbit has no ears;

the refusal to go to certain places (wacky warehouse, soft play – not a chance, birthday parties – nope, shopping centres, nope);

the sensitivity to noises – hoovers, crying, hair driers and Ohhh hand driers – how I DETEST your very existence;

the crashing into things and people;

the not knowing when she was hurting herself or others;

The spinning around and not getting dizzy even after half an hour of turning;

the lack of control;

the poor fine motor skills;

the Duracell bunnyism;

the total lack of sleep……..Evie used to be up, up to 50 times a night. Yes I know you don’t believe it. But that’s how it was. That’s another blog for you to read…..

By luck we were able to see a private OT who confirmed what we already knew and drew up a ‘sensory diet’ for Evie.

Now you must understand that SPD isn’t an official disability. It’s been around since the 1960’s. It should be recognised as a condition. There have been so many people pushing for it to be acknowledged but as yet it hasn’t been. This is why the NHS doesn’t help people with SPD. Few OT’s have any idea about it but the basics.

Lots of people with ASD have SPD. This is why when I researched Evie’s behaviours, that I wondered if she had ASD. You can have SPD entirely separate and independent from DS or ASD, ODD or ADD (I’m chucking the acronyms at you now 😉).

I wish it was more known. I wish the professionals had told me about SPD even if they couldn’t have helped us officially. To understand Evie’s behaviours, her licking and chewing, her rough play, her spinning helps more than I can explain. We were able to buy the right tools to help her. A spinning chair (thank you ikea); a dance sack (has to be seen to be believed); chews; tanglers and fidget toys.

It also helps to understand why we have toileting issues. Why she hates to poo. Why we have 💩 battles….

Understanding all of this has helped us to understand her and to help her. We can recognise her triggers when she can’t cope. We know how to help. The good news is that when you recognise it, you can deal with it better. We can help her to in time get used to these triggers.

Sensory Processing Disorder makes a great deal of sense to us.

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9 thoughts on “Making Sense

  1. Miss Rabbit 😂😂. Woody 😂😂😂. Having Evie spit flung at me from her chew 😂😂😂. All hilarious but equally frustrating. Spd is ignored by most NHS professionals because it needs a huge injection of funds. Never gonna happen in my lifetime. This is where the internet plays a huge part in SN parenting.

    Liked by 1 person

    1. It’s incredible how she can spin and not get dizzy…..ever! It’s frustrating until you understand it. Knowing what it is, is half the battle and a little bit of knowing that you’re not going mad! Well maybe only a little 😬

      Liked by 1 person

  2. I do think a lot of our children have some form of sensory seeking or sensory processing issues. I’m intrigued about the dance sack though… Thank you for joining #TeamT21, Hayley

    Liked by 1 person

  3. My granddaughter puts everything into her mouth And chews on things I’m hoping these bracelets are durable and she doesn’t choke on them My main concern it I can’t find items big enough that she won’t choke in The necklaces I worry about them cause they are small objects that she could choke on But gonna order the bracelets 👍👍for sure

    Liked by 1 person

    1. I have exactly the same worries. If you message Vic on twitter or send her an email through etsy she’ll chat to you about the bracelet. Evie hasn’t chewed through her’s yet. Unlike the red chewy knobby one in the photo and that’s supposed to be heavy durability. Although she still loves that one too – I’ve ordered her another one, I jusmt have to keep checking it.

      Like

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