JOIN ME ON FIREFLY GARDEN…

Join me over on Firefly Garden again today, blowing the trumpet for “Special Needs” parents: http://community.fireflyfriends.com/blog/article/why-special-needs-parents-really-are-super-parents

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FROM THE ARCHIVES.

Every so often I will repost some of my earlier blog entries for anyone who may have missed them …

PLATITUDES AND ATTITUDES.

A note to well-meaning people.

Yopu say: ‘Special babies only come to special people’. I now you think you mean well, I know you think you are paying me a compliment. But you are not.

You are holding that phrase out in front of you like a talisman against the evil eye: reassuring yourself that it could never happen to you, because you are ordinary, just the same as everyone else, not ‘special’ or ‘different’ like I must be. There’s nothing about you that attract that kind of luck.

Well, guess what? I’m just like everyone else too. I’ve done nothing good or bad in my life to attract God’s eye, either.

I’m just like YOU.

This little boy is my baby, I carried him in my womb, fed him at my breast and he’s one of only three people who can call me ‘Mummy’. That’s the most special thing in all the world. And the most ordinary.

 

 

FROM THE ARCHIVES.

Every so often I will repost some of my earlier blog entries, for anyone who may have missed them …

SO FAR, SO GOOD.

So far, it hasn’t been as bad as ‘they’ said it would be. Down Syndrome is not the future you would choose for your child, but it’s not the end of the world, either.

When I was told that there was a 1-in-12 chance that the baby I was carrying would have Down Syndrome, many people (medics and family members especially) were of the opinion that if I went ahead with the pregnancy my life would be over; I would have nothing to look forward to for the rest of my days but the incessant daily grind of being a carer, trying to meet the all-consuming needs of a disabled child.

I didn’t believe them.

So, with the life of my unborn child at stake, I closed my ears and dug in my heels.

I read many things that address the issues concerning ‘Special Needs’ families, some offering information and advice, some offering moral support and information. Many of the latter use phrases like ‘Warrior Mom’ and ‘Momma Bear’; they talk in highly emotive tones about the day-in-day-out struggle to meet their child’s needs and battle the prejudice of others. they are uplifting and inspiring; they make you sob into your morning coffee. While I have no doubt that many parents out there will find their experinces reflected in these articles, they do not reflect the experiences of all ‘Special Needs’ families. They do not reflect mine.

So, I wanted to offer an alternative view. I hope it will be a reassuring one. Because so far, life with an extra chromosome has been pretty ordinary.

ROOM ON THE BROOM.

Room on the Broom by Julia McDonald and Axel Scheffler is Freddie’s favourite story. He’d listen to it every bedtime if we let him. When the TV adaptation was shown at Christmas we recorded it, and he has watched it over and over. He knows it word for word.

So when we saw that a stage production of it was coming to Buxton Opera House we knew we had to try taking him. We weren’t at all sure how he’d tolerate the theatre experience — he’s never been before. His attention span is still quite short, and he’s a typically lively, fidgety boy who just has to be ‘busy’ all the time. Also, the theatre adaptation differs to the original — it has been added to and embellished, with songs and additional dialogue; we were a little worried at how he’d react when it differed to what he expected. We booked anyway, and crossed our fingers.

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On the morning of the trip we told him where we were going — explaining that it was a play with people dressed up as characters from Room on the Broom, and puppets, singing songs about the story. He seemed quite excited, and all the way there kept asking: ‘where going now?’ and ‘see Room on the Broom?’

We were up in the stalls, looking down on the action, but he refused to wear his glasses. Under the circumstances I didn’t want to push the issue, and since he’s slightly long-sighted hoped he might be alright without. When the lights went down, he climbed onto Daddy’s knee — and sat there, quiet and still, apparently enthralled. He was as good as gold, until the boy in the row in front stood up (it didn’t seem to occur to his parents to tell him to sit down). Freddie had to crane his neck to see, then, and started fidgeting and asking to sit on Mummy’s knee. I was on the end of the row, and as soon as Freddie got onto my lap he tried to wriggle off and escape — some children were standing at the front of the balcony and I think he wanted to go and join them. He wouldn’t have been tall enough to see over, so Big Sister persuaded him to sit on her knee instead, from where he would have an uninterrupted view. She hugged him close; with his beloved Big Sister as a backrest, he settled down again and even joined in with some of the ‘catchphrases’.

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As a reward for being such a good boy, Daddy bought him a little toy witch. He was highly delighted — he loves witches. Big Sister found a stick to use as a broom, and so the witch flew home through the park next to the Pavilion Gardens.

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In the light of this successful experience I think we might be able to brave a trip to the cinema, for Kids AM on a Saturday morning, when they show children’s films for £1.50 a go. Oh, and we’ll be able to take him to a pantomime at Christmas — that will be magical for him. I’m really looking forward to that.

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