Being the Mum and full-time carer to a twenty eight year old young lady, who happens to have Down’s syndrome has as many high’s as low’s. Being the youngest of my four children, and a twin to boot, I can honestly say that I spend an equal amount of time and patience with each of them, one way or another. Fortunately, for me, they give me so much pleasure and joy in so many ways.
While it is true that there have been more hills to climb, with SJ, some we initially thought insurmountable, we always managed to be heading in the right direction and eventually achieved the prize at the top of the summit. Whether this was an age appropriate milestone, as one of twins it was easy for us to see what she should be doing, so we encouraged her to follow her sister’s lead, for the record SJ was generally within them. However, all this positivity and enthusiasm soon changed once we were hopped on the education treadmill.
We as a family decided that SJ would attend mainstream school.
Twenty five years ago this was not an available option. Professional bodies knew best. Even though the majority of SJ’s teachers had never had any connection that they could relate to with someone who had Downs syndrome. I like to think that this is no longer the case and teachers are far better educated in teaching children with learning disabilities. The difference now is that they have little or no funding to provide the education that they would like to give.
If someone had told me that funding education, health and social services were the areas that needed less funding, to enable the country, as a whole, to get out of debt I would have thought they were talking complete and utter rubbish. We are not a Third World country. We are not run by despots and bigots. We are an enlightened, educated country and we look after those who are unable to look after themselves.
How wrong can you be.
The more you put into your children, any of your children, when they are young the less you need to worry about them in the future. SJ was able to learn of her peers what is acceptable in society. Her peers learned from SJ how to forgive and how to be kind. I learned that seeing the positive in life can be difficult but in the long term better for your health and blood pressure.
It is not SJ’s choice to not be independent, with a job, a home, a partner and all that that entails. Quite the opposite. SJ would love to hop on a bus as the mood takes her. Meet up with friends at a new pub or restaurant, go shopping for clothes whenever she fancied. It’s just that society is still not quite ready to let her do so.
In the meantime we make sure that there is enough stimulation in SJ’s life to keep her learning. Given the chance SJ thinks that she would enjoy staying up late every night, getting up late every day, check out Facebook, WhatsApp, watch her favourite television programmes. Forget about the cooking, cleaning, washing etc. Most of us might like to do the same. But the reality is that we would not only get bored, we would also become isolated, introvert, unsociable and eventually lonely.
Thankfully SJ and I share the mundane chores of life. We both cook, I wash she dries, we both do the washing, I iron the large items and my stuff and SJ irons the smaller items and her stuff. We go to the gym, SJ goes to swimming lessons, I go to the sauna, I watch 8 Out of 10 Cats, SJ watches Holby City. We can’t all like doing the same things, why should we all try to be the same?