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Special Needs Parenting: Best made plans…

Special Needs Parenting: Best made plans…

It’s not that I wanted to put right any unfulfilled childhood dreams I may have had, you know the ballet lessons, Piano grade 5 or weekend Gymkhanas on the family owned pony.

Just I kind of expected to be able to teach my child to read and to ride a bike, to walk hand in hand to the park and eat ice-creams together.

Is that so wrong?

Part of the shock definitely came from the fact that neither my husband nor I had ever met a family with a disabled child and there are no disabled people in our families.

Apparently that’s unusual, we were told by the health visitor, although obviously not that useful. Did we think this was something that just happened to other people?

Probably.

Was I just the tiniest bit smug at having a ridiculously low risk of Down’s Syndrome for my age (the results came in at 1: 1,750 chance at 37 yrs old) I’m ashamed to say definitely.

But that’s when the only genetic disability we knew about was Down’s Syndrome.

The fact that it had taken us four years to have a baby, after two rounds of IVF (actually, the highly technical version ICSI where needles take over where nature should) plus a miscarriage, didn’t ring any alarm bells for us.

It should have done for the medical staff treating us, but that’s another story.

We didn’t know about other genetic conditions, ones that a baby could inherit, so when karyotyping (genetic testing) wasn’t offered, we didn’t know to ask for it.

Although most conditions are ‘de novo’ i.e spontaneous, not all are and I firmly believe that karyotyping should be offered to all couples going through IVF, sadly it’s not.

Nor did we argue when the ‘experts’ week after week reviewed the scores of ultrasound scans of our very slow growing baby, and said nothing was wrong.

We naively thought they knew best, or at least knew something, which was more than we did at the time. How wrong we were. How wrong they were, but again that is another story.

So nearly 6 years on since we became parents for the first and only time, I’m reaching a point where I’m accepting that things are not going to be the way I had hoped they’d be.

Or at least some of the parts may be, but they may take much longer to reach or need a different approach.

I can teach my lovely daughter to ride her amazing pink sparkly special needs trike, which a wonderful charity funded for us to make possible.

I do spoon feed her ice-cream when the mood takes her, the Mr Whippy type is her favourite, and I pray every night that I will still one day walk hand in hand to the park and everywhere and anywhere with her.

As for the rest, I was thrown out of ballet aged four for bad behaviour when my mood turned as blue as my tutu, and there is no room in the house for a piano (or garden big enough for that pony) anyway!

Perhaps in the end, our dreams are just what we make them and we are lucky to have any at all.

Firefly Blog

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

Sam Bowen

Meet Our Blogger

Hi I’m Sam, Mum to Lucy who is has complex special needs but is the happiest person I’ve ever had the pleasure of meeting! I own Hip-Pose Ltd, a brand of clothing I designed for babies with hip dysplasia (which Lucy had). I’m also a fundraiser for her school PTA and in my spare time (if I get any!) I sew and make crafty stuff.

View Sam’s Profile

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