School holidays used to be a time of insanity for me (well, almost).  In the “good old days” when my two special needs children were both primary school aged, my daughter would get a one-week “holiday” at a respite facility and I would have just one child to deal with.  For the other week I would have both. 

Now, to a parent of normal kids this would actually look pretty good on paper.  But you have to remember that there is a huge difference between what you can do with a “normal” kid and a kid with high special needs.  Personally, I found it really hard.  At our kids’ special school during the school term they have a blast.  There is an art specialist, a drama specialist, a music specialist, trips out, swimming…  At home there is just me.  I would struggle to come up with stuff to do with children who could do next to nothing independently, and felt sorry for them being stuck with me in a relatively boring environment.

Then, about six years ago (I am guessing – I have a terrible memory!!), school holiday programmes for children with special needs came along.  What a GREAT idea!!  This meant that my son could attend during school hours for a whole week, and I ended up having the luxury of just one kid to look after per week.  Much easier to get out and about with (my daughter being in a wheelchair).  Coping became achievable and the school holidays became less daunting.

Then funding cuts happened.  Instead of a week, my son was given three days on the programme, then two.  Thankfully, in a similar time-frame, I was able to get him into the same respite facility as my daughter, and this took up the slack from the holiday programme.

Nowadays, with my daughter no longer with us (she died three years ago) I have my 14 year old special needs son and my two year old daughter at home during the holidays.  He is catered for in some way (respite/holiday programme) for about half of this time.  For the week that I do have him at home though, he has pretty high expectations.  I tell him that he has been spoilt.:) .  Like school, at respite and the holiday programme he has exciting and interesting things to do all day.  I struggle to come up with stuff for a week (I am making myself sound pretty pathetic I guess).  By 9am he is hanging around the front door, frustrated, wondering when the BIG DAY is beginning.  When is the taxi going to pick him up?  When will he be going OUT??  Of course he can’t say these things – he is unable to talk – but his body language and frustration says it all.

These school holidays my son had ABSOLUTELY NOTHING to complain about.  The school he attends decided to put on their own holiday programme and we could book our children in for up to four days – so I did!

These school holidays, other than the weekends, my son only has ONE day at home with his mum – and I am looking forward to that day cos I won’t have my daughter and I am planning for it to be a special mother/son sort of a day .

Compared to a lot of other parents of children with special needs I have probably been spoilt.  Many don’t have respite.  Many haven’t been able to access holiday programmes.  Many are unable to choose to hold down jobs because of the difficulty after school and during school holidays.  Many are struggling to cope financially because of this.  There simply aren’t the choices/options/freedom that “normal” parents have.

Thank you to our school for realising this, and coming to the rescue with a holiday programme that parents could actually have some control over – the ability to actually book their child in like normal parents do.

I know funding is always an issue – and this is an issue faced by this holiday programme too.  The school doesn’t have the funds to subsidise such a programme, and is trying hard to get funding for the next school holidays through various agencies, with mixed success.  It’s a shame that those “way up there” in lofty political places are oblivious to the absolute NEEDS of parents of children with special needs, and fail to understand why such a high teacher/student ratio is needed, making running such a programme pretty expensive.  Maybe they need to come along and see a holiday programme in action?  Take a few kids to the toilet?  Help a few kids do a craft activity?  Then maybe the penny with drop?