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Special Needs Parents: Accepting change

Special Needs Parents: Accepting change

I think we're all a bit like that sometimes.

It is something that I am working on every day in my quest to become a better person and a better mum; and it is certainly something that is crucial when you're a part of our special needs world.

I've learned the hard way that change is inevitable no matter how you fight it and that eventually you have to just bite the bullet and throw yourself in full throttle.

One of my biggest mental battles lately is accepting that I can no longer lift and carry Amy how I have been doing.

I've amazed myself with my own physical strength, but we are all human and I am doing myself some serious harm that in the long run will be debilitating.

Amy's movements are dyskinetic meaning her tone moves up and down, she never stops moving, and her movements can be very unpredictable and sudden.

These sporadic movements can still now catch me off guard and require me to suddenly twist and contort myself to ensure her safety. I'd say I'm pretty good at it but it isn't for the faint hearted.

Her weight itself isn't huge, she's only about 15kg, but she is relatively dead weight (hate that term!) in that she doesn't fully support herself how an able bodied child her size would.

This is one of the things that causes me the most heartache. A trip to the park or a soft-play centre is becoming more and more challenging.

The determined and stubborn part of me wants to plough on and ensure Amy gets to experience these things for as long as she can. But the realist and sensible side of me is screaming out to stop over doing it.

I am looking into some slings that can be held by two people and we will be able to use these on slides and things. I am having to find more inventive ways to help Amy interact with the world.

She is a bit of an adrenaline junkie and loves nothing more than swinging, sliding and being thrown around. I want to be able to do those things for her for as long as she wants me to.

We've had a portable hoist in our house for about 5 months now and up until recently I've looked at it only with disdain.

I don't want to need it. It is big, heavy, clunky... and unfortunately completely necessary.

I've suffered with a sore back now for a couple of years but have managed to stay away from the GP for the duration of this time. Until now.

The twinges and shooting pains become more frequent and eventually I felt as if my entire back was burning.

I kept checking my back in the mirror in sheer disbelief - surely my skin couldn't possibly be this sore without there being any visible evidence?!

I tried to remedy it myself with painkillers and stretches in a feverish attempt to avoid professional medical attention. I was partially concerned I would be told to rest more and not lift which I know is unfeasible.

Making time for a GP appointment is a pain in itself. We spend so much time making and attending appointments for our children that sometimes we overlook and neglect our own needs.

In addition to this - If I'm not attending an appointment for Amy... I hardly want to spend my spare time forging extra appointments.

I remember as a child hearing people say; "At least I have my health" and inside I'd be thinking to myself "what a silly old people thing to say...", but now I'm older (and questionably wiser), I absolutely agree.

Reluctantly, but also desperately, I made my GP appointment. She conducted a thorough examination.

She asked a lot of questions, tested my reflexes, made me perform some leg stretches and movements and even booked me in for a full medical review and did a sneaky flu jab.

Not only did she fully check me over, she enquired about my mental health and all sorts. She didn't fob me off like I feared, she listened and paid attention. I was so grateful.

Her diagnosis? Spinal neuralgia.

It all made perfect sense now. That burning sensation - I wasn't making it up! Nerve damage. My poor spine has been over exerted.

Stronger painkillers were prescribed, exercise sheets were provided, and a physio referral sent.

So now the hoist doesn't seem all too bad. I have since used it four times. It is slowly getting easier.

I am very eager to have tracking put in on the ceiling as it is logistically and physically very awkward trying to manoeuvre both wheelchair and portable hoist on one small floor space.

The lessons here really are simple.

1. Change is inevitable. Sometimes it can be a tough pill to swallow but change can bring good.

For example Amy loves being hoisted. She is such a thrill seeker that she laughs her cheeky little head off every time she swings in the sling. I've already accepted a huge amount of change.

It doesn't get easier, but at least I know to expect it.

2. Your health really is a gift. I wish I took better care of myself, I really do. If I suffer - Amy suffers.

I am no use to her with a broken back. I must get on top of this now and prevent it from getting worse. I know a lot of parents who have endured surgeries and all sorts from lifting and transferring their child.

Even with hoists the physical demand can be huge.

3. Don't assume the doctor won't care or understand! Our NHS is also a true gift.

I am very grateful that our healthcare system enabled me to see a professional on the same day and that I was able to afford and receive medication to help me for my ailment.

The waiting list for physio here is approximately 18 weeks... sure I could complain about that... but maybe by then I'll be better and not need it... or I will gratefully attend and once again enjoy the benefits of our healthcare system.

4. If something isn't right - Address it immediately.

The burning I felt on my back has made me unable to sleep for a few weeks now. The knock on effect of no sleep is horrendous.

I should have gone to the doctor long ago and sought the treatment I so desperately needed.

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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