One of the first pieces of advoce that the Community Paediatrician gave me was: ‘don’t make life hard for yourself. Just do the best you can comfortably manage.’

I have abided by that advice. I’ve done what fitted in with our already well-established style of parenting, our family dynamic, our day-to-day routine. I didn’t go chasing rainbows: if something did was a chore, or didn’t work for us, I didn’t pursue it. And I freely admit I did almost no research at all into Down’s Syndrome.

In the early days of Freddie’s life I had no time or energy for anything beyond trying to get some nourishment into him and praying that hjios bone marrow function would stabilize and become normal. Ignorance is bliss, I decided. What I did not know could not keep me awake at night, worrying about what might lie ahead of us. I would rather cross each bridge as I came to it, one step at a time. I didn’t want to project difficulties onto him that he didn’t actually have, just becasue I’d read they were common in people with Down’s. I’d already discovered that not all the, undoubtedly accurate, information in the Down’s Syndrome Association booklets we were given to read on the maternity ward applied to Freddie.

My gut told me I had to let Freddie himself be the one to tell me what Down’s Syndrome meant for him; and I might be less open to hearing what he was telling me if I filled my head with preconceptions. There were enough people in the world ready to make assumptions about him. He needed his mum to remain open-minded and questioning. I acted on instinct, just as I always do.

Perhaps my lovely Paediatrician (and she was a lovely, positive lady, as is her replacement) should have added another item to her advice prescription: ‘don’t compare yourself to other people.’

Because sometimes, when I hear other people’s stories, or read their blogs, I feel like a failure. Their children who have Down’s, at the ages of six, seven, eight or so, are toilet-trained, they can read and write, ride a bike, play sport, or do drama or ballet. At six my boy doesn’t do any of those things. he generally does not follow instructions, he does not always feed himself, he’s only just starting to get the idea that it is possible to put on your own clothes. Despite being first introduced to the potty at two, he’s still dry only about 80% of the time, clean much less. Our friends’ three-and-a-half-year-old is beginning to outstrip him developmentally.

I feel like I’ve let him down; taken my eye off the ball; been too lazy, too complacent. I read what other people are acheiving and I begin to question every decision I’ve ever made for him.

Should I have sent him to a mainstream school, even though all of the Primary schools in my area seemed either unable or unwilling to meet his additional needs?

Should I be ‘hot-housing’ him with his school reading books, going over the words again and again, night after night? O do I stop when his attention wanes, and wait until bedtime, when I sit him on my lap with his favourite Julia Donalson books spread out on the quilt in front of us, and read them aloud while he looks at the pictures, remembering to leave a little pause at the end of each line because he’s deveoped the habit of repeating each one back to me? Do I  push functional reading at the expense of having the pleasure of sneaking in when he’s watching the TV adaptations we recorded for him, and hearing him substitute the line: ‘buzz off! That’s my witch’ for ‘buzz off! That’s my Lucy,’ as he stands between his sister and the dragon on the telly?

Should I be dragging him off the swimming and dance classes after school, when all he wants to do is chill out on our big, woolly rug, play with his toys and eat dinner with his daddy?

I never did such things with with my older children when they were small. I did what came naturally and enjoyed the time I spent with them. I never compared to their friend’s parent’s. I was never pushy.I let them just bumble about and be kids while they had the chance, they chose their own subjects at school, they’ll choose their own universities and courses, or not. I give them what help and advice I can if they ask for it, but otherwise don’t really interfere.

They were heading downhill for their teens when Freddie was born. My parenting style was already fixed, and I’ve parented Freddie in pretty much the same way I did them, with one or two small adjustments. They both ended up on the schools Gifted and Talented register. Freddie is in Special School. Perhaps they are what they were always meant to be, inspite of anything I did, or did not do? Perhaps the true value of my efforts will be to teach them that they are loved and cherished, and worth spending time with, just as they are. That, and some fun memories.


2 thoughts on “IS MY BEST GOOD ENOUGH?

  1. I’m sure you are doing your best, and your best is perfect for Freddie. I’ve learned that in the SMA community there is a range of abilities in our children, even within the same types.


    • Thank you. I think the same is true within any “condition” or “syndrome”, cos underneath the diagnosis is an individual – an individual we are priviledged to see, that many others might overlook, but hopefully, by degrees, we can change that.


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