Down’s Syndrome: Things I wish I had known


A contributor to the UK Down’s Syndrome mailing list recently posted this list in respect of her daughter, Karen, who has Down’s Syndrome and is in her twenties.

In many ways it reflected our own thoughts about Little A. It’s well worth reading if you have just been told that your baby has, or is likely to have Down’s Syndrome. Numbers 6 and 11 are particularly pertinent, in my opinion.

1. I wish I had known that Karen would be able to travel around London alone on public transport.

2. I wish I had known that she could live in her own flat, not residential care.

3. I wish I had known that she could use various complicated bits of technology from a young age including CD players, tape recorders, washing machines, telephones, computers etc.

4. I wish I had known that she would have choices as an adult and was not destined for the sheltered workshop told to me when she was 5 days old.

5. I wish I had known that intelligence wasn’t just about academic skills but it was about comprehension, observation and problem solving, all of which Karen does brilliantly.

6. I wish I had known earlier that you need to take the pronouncements of professionals with a large pinch of salt. That mother’s instinct (or dad’s) proves to be right in the majority of cases.

7. I wish I had known not only that she would be able to vote but that she would be able to choose the candidate based on her own ideals and not her parent’s politics.

8. I wish I had known that she would be so creative – poetry, paintings and the like.

9. I wish I had known that she would develop a wonderful sense of humour.

10 I wish I had known how courageous and confident that she would be.

11. I wish I had realised much earlier that having a learning disability is not a tragedy even if the rest of the family all have university degrees.

12. I wish I had known that having a daughter with Down’s Syndrome would bring me in contact with friends from all over the world and enable me to visit such places as Nashville and Blackpool. Also, it enabled me to meet and become friends with some marvellous people here in London.

13. I wish I had known that we would be able to do all the family things we would have done had Karen not been born with Down’s Syndrome.

14. I wish I had known that Karen was going to meet more famous people and appear on TV and in the press more than her siblings!

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