Demise of the Summer Scheme - Apathy

In the last two years, the local summer schemes my son attended have both closed down. Their closure was not down to funding, but rather down to lack of interest. The funding was there, the kids were not.

The summer scheme my son attended this year had to end 2 days early. Out of the 20 parents who originally agreed to send their children to the scheme two weeks ago, only eight weighed in with their children. The scheme was excellent, the staff were motivated, fun and excited to work with a full compliment of children who had a range of abilities. The premises were safe, the activities were well structured and varied and the scheme was run in a high density area of population. It was assumed it would be fully subscribed and it was. Problem is 12 parents who signed up didn't bother to show up with their children.

The news was awash with stories of summer schemes for 'special' kid losing their funding. This was not the case where I live. The summer scheme that parents were complaining about most vociferously was in the Down area and was actually a finite program that was going to end anyway. Where I live there were numerous summer schemes available for my child that were inclusive. Due to lack of attendance, I doubt many of them will be there next year.

Two years in a row this has happened to my child. A scheme my child attended last year closed down a week early for the same reason - apathy. The two week scheme my child attended this year made a huge difference to him. He emerged after two weeks a different child, more social, more language and with more skills. I am sure if he had the chance of a four or even eight week scheme he would have gained many more skills and confidence. You 12 parents out there who decided not to bother to send your child to this particular scheme - what was your child doing for those two weeks? Where my child was making new friends, and engaging in art and music, cooking and learning how to play ball games, and use a computer, what was your child doing?

I have asked the leaders of the scheme for the names and phone numbers of all the parents who originally signed their children up to this scheme, many of whom have children on the autistic spectrum. Obviously the Leader isn't going to divulge that information. But, I want to ask those parents personally why they opted out. Why did they take up places and not avail of them? They prevented other children from benefitting from the scheme. Essentially, they ruined it for everyone else. No scheme next year. Ta very much!

The apathy I have seen both this year and last year by parents regarding summer schemes, particularly inclusive summer schemes has been a severe detriment to my own child. My son needs to have children to play with over the summer. I can buy a lot of things, but I cannot 'buy' children to play with him, to interact with him. Summer schemes are crucial for his continued development. Neurotypical children have all kinds of opportunities for play and interaction both during the school year and outside of it. Other children do not seek my child out to play with him. His language is delayed, his playskills are only just emerging. Kids generally don't want to know him. Watching him at his summer scheme, however, playing tag and interacting with kids of all ages made my heart soar. The fact that you parents out there (all 12 of you) who decided not to send your children to the scheme has left me feeling confused and angry. I echo my son's words to you - 'no more summer scheme mummy?'

When this particular scheme is not available next year, you 12 parents will no doubt harangue and scream at how your children's needs aren't being met over the summer. If you do, I will be there too, reminding you of your apathy.

Victimhood doesn't work with ASD. Action does. There are many many parents and carers in Northern Ireland who are fighting tooth and nail against this kind of apathy and all the forces out there that keep our children in limbo. I wonder if your voices are part of these. If so, you do a disservice to those parents and carers and invididuals who are actually doing something. Actions speak louder than words and this time, all 12 of you let all of us down.

I propose that summer schemes start charging parents in advance. £50.00 per week should suffice - non-refundable. Funders of these schemes need accountability. Without it, they won't fund. Why would they? Why should precious money be wasted? It's time that some parents acknowledge their tacit participation and contribution to the 'problems' our kids and their families face regarding the issues surrounding having a child on the autistic spectrum.

I fear that across Northern Ireland, there are a lot more than just '12' parents. I suspect a lot of parents conjure up all kinds of excuses for not engaging with what is out there preferring to tar it all with the same brush. Unless we know and experience what is available, how can we make it better? Who will listen to your voice and your child's voice if you don't have the experience of participation?

I hear parents complaining all the time about what there is, or is not available for their child. It is so easy to complain - it is not easy to get your hands 'dirty' and do the work yourself required to change things. Try and fund raise £2,000 per week to run a summer scheme and come to tell me how 'easy' it was. Guaranteed, if parents had to fundraise for summer schemes themselves, their children would definitely be in attendance.

Maybe next June when it is announced this summer scheme and others are no longer available, the unemployed Leader of the scheme will point out to me the names of you 12 parents as you 'demand' more services. I will ask my son to remind you that 'you did it' and get him to ask you 'why?'

To quote the old saying, 'empty vessels make the most noise'.