In short, we grieved. And it hurt. And one thing that no amount of expert advice can do is take the pain away. Which is why I feel that one of the most important things we did at that time was join a support group. It reminded us that there were other parents in the same situation as us, who we could learn from or just lean on when we needed a crutch. It allowed us to talk about our experience with people who had been through the same process, who wouldn't judge us, feel the need to utter empty words of comfort, or console us with the thought that there were other people in the world who were had it worse.
Crucially, there was nothing formal or structured about the group’s meetings. Every two weeks we get together in a school staff room, put the kettle on, sit around and chat about whatever's on our mind. Trained nursery staff look after the children in a separate playroom. It gives us a rare moment to breathe and talk freely as adults while knowing our children are in good hands. A couple of times in the summer we have a day out together, and once a year some of the families spend a week in a holiday park. Many autistic children don’t cope well in places like hotels and airports, struggle with major breaks from routine and have a poor sense of danger, all of which can severely curtail their families’ holiday options.
In the past we've raised funds for the group through appeals such as Children in Need and Cash for Kids, as well as our own events like charity discos. However, as we’ve recently elected a government who've decided that the disabled should have their services cut so that bankers can continue to binge on bonuses, these sources of income are drying up. In any event, though, giving to charity is bound to be one of the first casualties of a recession. So on January 23rd a few of us will be donning red suits and false beards and running the Santa Dash in Glasgow to raise money for our group.
Small local charities don't need a great deal of money and can make a real, tangible difference to people's lives. In the case of our group, the funds pay for the creche facility for about 20 nights a year and cover the cost of the annual outings. Our members come from all walks of life: what brings us together is that we all live in the south side of Glasgow and have children with autism. Life isn’t all chaos and despair. Our children are a joy, not a burden, but they sure as hell put us through the mill sometimes. And at those times, the 90 minutes a fortnight when we get together over a cup of tea and share our experiences can feel like a lifeline.
- If you’d like to sponsor me and support the South Side Communication Disorder Group, please get in touch here for details of how to donate. Because of the size of the charity we haven’t been able to set up a page with justgiving or any other online donation service.
If you live in the UK and want to find out if there’s a support group in your area, the National Autistic Society has a comprehensive Autism Services Directory on its website.