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Halloween in a CP world

Halloween in a CP world

Halloween used to fill me with so much excitement... I'm not even sure why.

I don't like sweets that much, fake blood makes me feel sick, my eczema does not allow face paint, my anxiety makes me jolt with surprise every time someone knocks on my door.

I think it is the "rock chick" in me… the darkness, the time of year, the nice leaves and so on.

It has kind of taken on a new meaning for me now I have a child. When I was pregnant I even imagined how Halloween might look for my future child and I.

When I was a child I used to typically dress as a witch or a vampire and I would get taken to various neighbours houses and also to trick or treat my grandma. It was all very exciting (except for the time I got a banana as a treat. Or the time the vampire blood made me be sick and then I was too ill to enjoy my treats).

Of course, fast forward a few years and here we are in the world of cerebral palsy.

A world I did not expect to become a part of. A world I am still finding my feet in and trying my best to navigate myself and my child through this turbulent venture.

I would be lying if I said my heart doesn't ache a little at these events... I would very much like to enjoy Halloween how "typical" families do, but in a way it's kind of cool finding our own way of having fun and learning.

Also, in some ways I think it's a bit of a silly thing to celebrate... a bit like bonfire night and Valentine’s Day.

But I suppose back when I was a child these traditions held a real place in my heart and brought great excitement to my life, and we need to continue that into future generations.

This is our third Halloween together. Last year was great.

Amy's respite centre had a Halloween event on... there was sugar skull decorating, a buffet, and generally an amazing atmosphere.

I like any event where there is an equal number of wheelchairs to mums.

I like it when I'm in a room and you're wondering whose feeding pump is alarming. It brings me comfort... this is normality, this is our community, and we are very lucky.

This year I expect I will dress Amy and I up, and await trick or treaters. Amy has lots of cool lights so I plan to light up the front room bright green.

I don't think cognitively Amy understands these seasonal events yet. I am already trying to teach her Christmas songs so there are no sensory issues in nursery when songs she doesn't know start to be sung. (Honestly, if you sing the wrong song there WILL be screaming! So far Jingle bells is accepted.)

I have seen so many people talking about taking their child out in their wheelchair trick or treating and so on.

I know for a fact that there will be huge temper tantrums if I even try to leave the house with her after 6pm…

..also I don't always like the thought that we might scare someone or annoy them by knocking on their door.

I worry too that if I did take her she would find it pointless that she is being given sweets when she is unable to eat. I certainly can't go round insisting people hand out electronic switch adapted toys now can I?

This year we have a few really cool all singing and all dancing Halloween toys. One sings the monster mash and the other walks around and does a spooky tune.

She seems to really like them. I am hoping that these are toys we could maybe bring out each year to remind her of this particular event.

We've had a lot of fun in the supermarkets looking at all of the noisy, glittery, spooky decorations…

it is like a free sensory treat going to shops and garden centres at the moment and I think I love it as much as she does!

I do find that with each year the range for Halloween becomes more and more extensive.

We have managed to buy so many light wands... the sort you would use for visually impaired children and pay triple the price for on some websites. The same goes for Christmas decorations... the beads, lights, tinsel... perfect for children with visual impairments like Amy and so good for exploring textures and sounds.

So I think this year it will be a quiet one... stay in, hand out treats, most likely watch videos on the iPad. But I hope we get to carve a pumpkin together... a good sneaky opportunity for messy play.

Any new activity that we do will be helping shape Amy's understanding of the world and it is so important for us special needs parents to really nurture their curiosity...if they can't get out to the world we do need to try everything in our power to bring it to them and make sure they are included like everyone else.

I hope that by next year she has a better understanding of it all as she will be older.

I would love to be one of those parents you see that has decorated the wheelchair in a really elaborate costume that looks really cool. Maybe one day we will trick or treat like other families do.

I hope that further into the future she will share my love of cheesy Halloween films and will sit and binge watch the lot with me! Who knows?

Whatever you do this October, have a great one! I'd also love to know what other families similar to ours do at this time of year.

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Ceri-Ann

Meet Our Blogger

My name is Ceri-Ann Brown and I live in Stockport, Manchester. I live with the love of my life Phil, my amazing daughter (Amy-Rose) and my giant guinea pig Vito. I care for Amy full time and work one day a week in an office/call centre. In my spare time (ha!) I like to blog, read, play video games and listen to rock music. I have a huge love of coffee, animals, and nice days out with the people who matter.

View Ceri-Ann’s Profile

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