Additional Needs

My Child is Amazing Because...

Posted by Ceri-Ann Brown on 1st April 2019 Additional Needs, Disabilities

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My child is amazing because she's simultaneously the most unique person you could ever meet, but also just like other children in so many ways.

I think what people who are not part of the complex needs, special needs, additional needs (whatever your preference of term) world miss is that actually... behind the wheelchair, splints, feeding tubes, dribble bibs (or bandanas as I am trying to call them) whatever else paraphernalia my child may have... she is actually a child.

It saddens me that the first impression people get of her could be "disabled person" or "person with a disability" because actually there is so much more to her than that.

I always say it - she is not her diagnosis. But paradoxically... she sort of also is.

But if you write her off as nonverbal or difficult to interact with then I feel sorry for you. Because she has so much to offer the world, her smile lights up a room, and she can teach you a lot about yourself.

Like all other kids, she has a silly sense of humour, she wants to be involved, she has her own preferences and hobbies.

Like other kids she thrives on social interaction, she loves music, she loves to explore the world.

She may go about things a little differently, and it may not always be obvious how to talk to her if you don't know her... but TRY.

My child is amazing.

I am guilty of a bit of "woe is me" and everything-is-so-tough-itis.  I complain a lot.

It's kind of my right as someone in my 30s (hello ibuprofen), someone who is sleep deprived, and someone who has more physical and medical responsibilities than the average person.

However, it is an absolute honor and delight to have Amy. I hate to overlook the fact that actually there are so many positives to my role as a parent.

There are so many things I love about her. She's my best friend.

I love how she doesn't care who her audience is - if she's not happy about something, she is not afraid to let the world know.

I love how she doesn't discriminate.

She doesn't spend time looking at someone and immediately noticing what is different about them. She looks at everyone with interest (or sometimes complete dismissal sorry!) and waits eagerly to see what they can bring to her day.

I love how nosey and curious she is. All children are curious. She's not curious in the sense of "what happens when we die mummy?", "why do spiders have 8 legs?" etc, but she's curious to see what's around every corner.

No one can walk past a room without her sneaky eyes capturing them and wondering who they are and what they are doing. It really makes me laugh.

It also reminds me of that first year when initially we were told she was blind, then we were told severely visually impaired.

She is visually impaired, but not to the extent we first thought, and it makes me proud to see her look at the world around her.

She has this superpower - if someone has a phone in the hand, or there is a screen anywhere in the room... she will see it and she will try and swipe it and interact.

She's a youtube junkie just like most other children.

It's very funny in waiting rooms when she sees a TV simply displaying information and she shouts and starts hitting my lap to encourage me to put something better on.

Her laughter is so infectious. Even at 4 am when you really would rather be asleep.

She is the feistiest bossiest person I have ever met in my life. She may not have the words but she knows exactly how to push our buttons and literally kick us into action to work out which of her needs we haven't met.

She's very clever. She takes everything in like a knowledge sponge. You can never be complacent or make assumptions with her, she will always surprise you.

I remember a few years ago when I foolishly left a Christmas present in plain sight.

She recognised the brand logo and managed to roll and bounce on her back over to the box and started to whack it to imply "I've found it, mummy.. open it and give it to me!".

She amazes me every day with what she has to put up.

Gastric discomfort, muscle pains, frustration, seizures, constant intervention from professionals, surgeries, procedures, etc. and can still smile and have a love for life.

I adore her bond with people she is close to. It moves me to tears thinking about it.

I didn't know if she would ever have the cognition to know who we were or who friends and family are. But she absolutely knows.

A person can be severely brain injured and entirely reliant on care from others but still, 100% know how loved they are and in turn show that they love too.

She gets so excited to see everyone in our family (not always, there is still a lot of child-like sass and attitude at times!) and I love her reaction to daddy coming home from work.

They have such a special bond.

I love that she is a thrill seeker. She really craves movement and loves nothing more than being thrown around up and down and all around.

She squeals with hysterical joy when her daddy does physical play with her (and I stand in the background half cringing half amused).

I hope that one-day theme parks and local parks make more accommodations for wheelchair users so that they can be included in the fun.

I love how she isn't materialistic. So many children ask and ask for things at the shops, and they want to acquire and collect everything, it's natural.

All she wants is our attention, walks, music and videos. She's tube fed so food is never an issue, she doesn't care about collecting things and is happy now with most of the same toys she has had all of her life.

She treasures the things she has and never asks for more.

Don't get me wrong, she pulls at my purse strings every time we go to the toy shop, but more often than not if we actually buy the toy she won't play with it at home and seems to just want to demo everything that's out there!

I could talk all day about how amazing she is. How she has exceeded all expectation, overcome every obstacle thrown her way, smiled in the face of adversity, endured more than anyone else will ever endure in their life and still plod on regardless.

She inspires me to be a better person, to be more emotionally resilient, to be better educated, to be thicker skinned, to be more patient, to be more empathetic.

I am far from perfect, I have many flaws, but almost every positive aspect of my being has been granted to me by her.

I am more tenacious than ever before, I want to advocate, educate and make aware. I want to fundraise, I want to help and meet others.

I want everyone out there to see her importance and to see her through my eyes. I don't want the world to miss out on a minority selection of our society because they aren't comfortable or they don't understand.

She doesn't want your pity. She doesn't want to be your inspiration. She's just like you.

She doesn't need to change. The world needs to change.

She is amazing, and I hope that everyone else can see that.

I'd love to see words from others on why their child is amazing. It's important that the world knows that there is so much positivity surrounding our children.