People with autism usually have difficulties with social communication
When I signed up for this blog tour I thought I’d write something about some of the wonderful people I’ve worked with who had autism. Before my daughter came along I was a teacher in a college, teaching classes in English Literature as well as working to support students with all manner of learning difficulties. Two of my favourite students to work with had Asperger’s Syndrome, so were on the autistic spectrum.
However, I think I’d rather write about my daughter. Daisy doesn’t have autism, but she does have Downs Syndrome (yes, US folks, we add an “s” on the end over here!). She’s now eight-and-a-half-years-old, although listening to her, you’d think it was her ninth birthday tomorrow. Just this morning she was planning her birthday party invitations. It’s going to be a pink, fairy princess party apparently. I really hope this doesn’t mean I have to wear a pink dress too!
When I first found out about Daisy having Downs Syndrome it came as a huge shock. There was an abnormality picked up during pregnancy at the routine 20 week ultrasound scan. The radiographer couldn’t tell me much more than that at the time, but I was booked in to see a specialist in Bristol the following day. I was nervous, and became more so as the initial radiographer called in a senior colleague, and then a Professor of Foetal Medicine to come and look at the images. I was told that my child almost definitely had a chromosomal defect, and very possibly a heart defect too. I opted for an amniocentesis to find out more for certain, and a week later was back in Bristol, being told that my daughter had Downs Syndrome. This was followed up by a scan from the cardiologist (the same one Daisy still sees every year for check-ups), who confirmed that she had a Complete Atrioventricular septal defect. This is a serious and life-threatening defect where the heart is missing the wall down the middle that divides the two atria and the two ventricles. I heard that she’d need to have major open heart surgery before she was six months old. My own heart broke.
All through my pregnancy up to that point I’d imagined I’d have a child much like myself. I pictured a bookish daughter, who would go on to have an incredible career and travel the world. She would be creative and beautiful and the whole world would adore her. And of course, she’d have children of her own one day, so I’d have beautiful grandchildren to look forward to as well.
Now my hopes and dreams were brought crashing back down to earth. I had to grieve for that perfect daughter who wasn’t going to be, and to face the fact that I was going to be the mother of a child with special needs and heart problems. And I had to go around telling everyone I knew and dealing with their reactions.
So, I began preparing myself. I read up everything I could find on Downs Syndrome (some of which was horribly out of date!). I didn’t read about the heart defect, though, because that was too frightening and entirely out of my hands. I also went around telling my friends, family and colleagues the news. Most were wonderfully supportive. A few were visibly upset and needed comforting from me, which was a challenge when I was feeling so cut up inside. Others said well-meaning but rather upsetting things, like telling me about the young woman with Downs who had a job at the local Waitrose packing bags. Excuse me, but up until a few weeks ago I’d imagined my child would have some incredibly glamorous and rewarding career, and now you’re telling me I should be glad they’ll be able to pack bags in a supermarket?! But I smiled and thanked them and seethed quietly inside.
Anyway, after the initial traumatic few weeks, things began to settle. My (then) husband and I decided on a name: Daisy, and a couple of days later I felt her kick inside me. I knew then that she’d be okay. She was a fighter, and she was telling me that. Things started to get better from that point on, and I knew I’d be able to cope with being Daisy’s mum.
There were many challenges in Daisy’s first year. She was rushed off to intensive care after her birth and we didn’t get home from hospital for eleven days. Then there was the whole terrifying experience of having her go through heart surgery at Bristol Royal Hospital for Children when she was just five months old. I spent my very first Mother’s Day by the side of her hospital cot, but she bounced back incredibly quickly and is now thoroughly proud of the scar running down the middle of her chest (she calls it her zip!).
I’m not saying that life as a parent of a child with Downs Syndrome is a bed of roses, but then again, I look around me at parents of perfectly “normal” children and see them dealing with all kinds of issues themselves. I honestly wouldn’t have Daisy any other way. She’s perfect the way she is, and she brings light, love and laughter wherever she goes.
And you know what? My Daisy is everything I originally hoped for, and more. She is beautiful and creative and adored everywhere she goes. She loves reading, and I firmly believe she’ll be able to find herself a rewarding job she loves when she grows up (knowing her, something to do with cakes and hospitals!). Having Downs shouldn’t stop her from having a child of her own one day, should she want to. And as for travelling the world? Well, I guess it’s up to me to sell enough books to take her on exotic holidays.
But I also know she’ll be perfectly happy with the simple things in life, like a day out at Longleat, handling scorpions and proving she is far, far braver than her mum!
What have you learnt from people with special needs? Has anyone touched your life like Daisy has touched mine?
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Jo’s latest title:
When Mr. Wrong measures up just right!
College tart Felix McAvoy is used to causing a stir with his conceptual art pranks, but for his final show he’s planning something even more outrageous. In a last ditch attempt to seduce his jaded tutor, Felix plans to wear the canvas in a subversive display. However, if he’s going to do this right he’ll need a tailor-made canvas suit. Fortunately, he knows just the tailor to turn to for the favour—and Felix isn’t shy about offering favours of a very different kind in return.
First year fashion student Andrew Wheeler knows Felix by reputation only–and plans to keep things that way. Andrew’s determined to save himself for the man of his dreams, and Felix couldn’t be more different from his ideal Mr Right. There’s only one use Andrew will contemplate for Felix’s body: a model for his end of year project. Trouble is, it’s going to involve a lot of close contact with a nearly naked Felix, and Andrew’s never had temptation quite so close at hand!
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