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Special Needs Parents: When life keeps reminding you you’re different

Special Needs Parents: When life keeps reminding you you’re different

I opened it... I always do... almost like a morbid fascination. You see, this particular site and various others have the ability to send me from a good mood to feeling alienated in the click of a button.

The email began "Now that your little one has outgrown the need to be carried, check out our quick guide for parenting essentials you'll need for your munchkin on the move"

I am sure if you have a non-mobile child you'd read that line and have a similar reaction to mine.

My child is not "on the move" nor has she "outgrown the need to be carried", also please do not refer to her as a "munchkin" (though I did google the term munchkin and it does actually mean child)

I hate these "milestone" based emails. These sites think they've personalised the email to cater to exactly who they expect your child to be. I get them from baby formula companies, nappy brands and all sorts.

There was a time a couple of years ago when these emails would cut deep, further reminding me of how differently my parenting journey had deviated from what is deemed as "normal".

I would read the email through curiosity and almost a naive hope that some of the milestones mentioned would match my child. They never did.

Imagine having a 6 month old child whose nutrition relies purely on artificial means i.e. a nasal gastric tube and being bombarded with constant emails about how to wean your child from breast and bottle feeds.

It made me feel like I had failed at one of the main things expected of a parent - to nourish your child, naturally.

Sure, I expressed breast milk for as long as my body would let me. But seeing this emails almost invalidated my efforts.

These days I very much stick to the ethos that "fed is best". It's true. Some of us need a little extra help to gain weight and nutrition, and however you do that for your child is the right way. End of.

I don't need reminding that had my child been able bodied she would not need to be carried. In fact we are at that awkward point in this journey where she can be lifted and carried but definitely not with ease.

We are approaching the time of needing to hoist, and this is a tough pill to swallow.

In my disappointment at this email I posted on Facebook to register my hatred of these emails. It surprised me how many fellow special needs parents related to what I put.

Most of them said they unsubscribed from these emails, or just deleted them or didn't read them. Most agreed that yes, it can be painful seeing those emails.

I do not for one second expect these companies to consider that the families they are emailing may not relate to a word of what they are saying.

They might not want to look at your exciting new range of toys that require fine motor skills, independent imaginary play and so on. To them, we probably don't exist.

They will see me in their store, looking at toys for my daughter that are way below the "recommended age" i.e. 0-6 months.

I will look at these toys thinking of tactile play, visual stimulation, improving gross motor skills. When I shop, it is with a different agenda to most parents of a child the same age as mine.

Recently I amused myself in a bargain store. My shopping list was: A small laundry bag so I can wash g-tube pads without losing them.

A large cosmetics bag or lunch box to store medicines for respite visits, and drawing pins so I can pin string to Amy’s wall so I can adequately display her bibs so I don't have to root through drawers for certain ones.

It's amazing how our lives adapt and what we end up seeking out for our children. I see the world completely differently now.

I find myself in toy shops skimming over all of the toys I know aren't appropriate. I hate that I have to ignore those toys.

In spite of my angry ramblings, I sometimes find joy that we are in our own little secret world.

I love discovering a new bag that will fit meds in perfectly, I love when I find a new toy by our favourite brands and I can tell that Amy will be able to activate it by herself.

I take a huge delight in empowering her many skills.

I remember when Amy first got her diagnosis of cerebral palsy. I was told to celebrate every single achievement.

I was also told "inchstones not milestones" or to overlook milestones completely. She actually has many behaviours that I would deem age appropriate but to me this isn't important.

Helping her to communicate in her own way, giving her as much independence as we can, making sure we minimise any potential painful interventions, and most importantly ENJOYING LIFE are the main goals and in itself a huge challenge.

We don't go to the park to try her riding a bike...  we research special needs bikes and are planning a trip to a local disability friendly biking session.

We don't walk down the street hand in hand whilst I teach her how to safely cross the road - I walk behind her, pushing her chair, singing to her her favourite songs and smiling to myself when she lets out a joyous cheer.

We don't go to a cafe and have hot chocolates together - I sit with my extra-large supercharged Americano whilst she indulges in her favourite YouTube videos.

I don't plonk her in a shopping trolley seat or run round after her in the shops - I walk a long facing her as she sits in a firefly trolley. She helps me hold the shopping (sometimes throwing it on the floor and laughing)

We do everything everyone else does, but in our own unique, cool, sometimes challenging, awesome way.

It doesn't need to be age appropriate, it is what it is.

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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