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Things My Daughter Has Taught Me: Special Needs Parenting

Things My Daughter Has Taught Me: Special Needs Parenting

Here are 5 things my daughter has taught me;

To smile

My daughter has a condition that randomly gives her paralysis from the neck down, as well as numerous skeletal abnormalities, and hypotonia.

She finds daily tasks such as eating, moving and sometimes breathing a struggle.

She is also in a lot of pain sometimes and gets prodded by different doctors, therapists and health professionals more than any parent would feel comfortable with.

Yet through every pain, through every day where she can’t move, through every day of hospital visits she just smiles.

Not just a small smile, her smile lights up a whole room.

She is generally just happy. Her life is difficult and yet she just smiles.

So now I have learnt to smile, that if my daughter can smile through all her problems I can smile through mine

To persist and to adapt – failure is not an option

We were warned not to expect crawling or walking and most probably sitting due to my daughter’s problems. So we persisted on with the physiotherapy sessions and doing physiotherapy at home daily.

Gradually my daughter rolled, it isn’t the ‘normal’ way to roll, but who wants to be normal. Once she was rolling she then decided she did want to move and to crawl.

Well she can’t crawl, she just isn’t strong enough and due to her symptom’s she will probably never crawl, but has she given up on the idea of moving around independently?

Of course not, she discovered her legs aren’t strong but her arms are and so she drags herself along.

She has learnt she tires quickly and can’t get a lot of milk out while feeding, so she has figured out if she squeezes my breast while feeding she doesn’t have to suck when she is feeling weak, yet she still gets her milk.

She has taught me failure is not an option, if you want something go for it.

Not to take things for granted and to celebrate every milestone no matter how small

Before our baby was born we got the milestone cards ready in anticipation of when our baby would crawl for the first time, when our baby would say Dad for the first time.

Yet these milestones seem like they will never come.

We did our own little milestones instead as we realised she was progressing just slowly and in a different way to other babies, so we celebrated her first (and only) splash in the bath.

We celebrated the first time she ate puree without choking on it. We celebrated the day where she could reach out and touch a toy above her that she wanted to (at 7 months).

We celebrated when she made a noise, not just the first dada, the first sound she made.

We are going to celebrate every little thing she does achieve, due to celebrating every little thing it has also shown us how much we take for granted.

That walking to the shops I would moan about but actually at least I can walk to the shop.

I am grateful for my other children, although they shout and fight amongst each other I realised I took that for granted, that some children will never get to shout and fight and play and just be normal siblings as they physically or mentally can’t.

I just learnt not to take anything I do for granted.

To realise doctors do not know everything

I always thought if you went to the doctors with symptoms, you would get answers, you would get a cure or at least a way of managing the symptoms and yet I quickly learnt with my baby girl that this isn’t always the case.

That sometimes doctors can be stumped and can just shrug their shoulders and say, "I really do not know".

It also taught me that they can also speculate on what will happen in the future but they haven’t got a crystal ball.

They said they didn’t think our baby girl would ever sit up and yet here she is, she has learnt to sit up!

Her spine is all over the place and her pelvis points up but she sits! We cried so hard when she first did this as it is the first milestone we were told not to expect and the first one that she has adapted through.

The doctors also never expected her nerves and neck muscles to regress and yet this is the case.

So although she has proved the doctors wrong in one way she has also proved them wrong in the regression way.

I am stronger than I ever thought

If you had told me when I was pregnant that I would have a SWAN child, that I would be up and down hospital without a diagnosis.

That my daughter would have physical disabilities that the doctors wouldn’t know how bad they would get, I would have laughed and said I would never be capable of that, that I would break down and not be able to function.

Here I am coping.

I still have days of immense sadness and anxiety of everything that’s going on but generally I am positive. I get out and about and I function.

I never thought I would be able to cope with everything the medical professionals keep throwing at us, that baby girl throws at us but I am strong and I am capable of doing this.

I never thought I would be able to learn the physiotherapy activities, that I would learn medical jargon, that I would be able to speak out and tell my story of my struggles, but here I am.

As parents to disability there comes a strength that I can’t explain, it’s both emotional and physical strength and a strength I never knew I was capable of.

I wonder what else she will teach me over the next few years and in fact her lifetime. She is so strong and amazes me every day.

All I can say is Thank you baby girl for being my daughter and teaching me all these things.

Firefly Blog

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

Rebecca Shayler-Adams

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We are just a typical family muddling along our day to day lives. 4 kids, 1 with autism, 1 with an unknown neuromuscular condition

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