I am Mrboosmum and I am a working parent. I feel like I have to write that in the style of a group therapy confession. Not that I feel I need to talk that way to other parents of kids with special educational needs. To be honest, most conversations I have with mums who have kids with disabilities or additional needs go like this:
Them: So you work then?
Me [on the defensive, thinking they will judge me]: Yes, but my employer is understanding and I am fortunate enough to work flexibly to minimise the effects on Boo. I take him to all his appointments.
Them: Oh, I’m not judging you. You have to do what’s right for your family. I’d give anything to be able to work some of the time.
Them: Oh I’m not judging you. I tried to but couldn’t make it work with childcare.
No: the folks I do have to defend myself before as a working parent are Early Years providers. Because as the regional Special Needs Co-ordinator for my area (someone whose son has some developmental delays of his own) put it to me a few months ago, ‘The trouble is, the LEA doesn’t recognise that children have any educational needs at all until they’re 3. That’s why provision is so patchy and why you’re gonna have a real battle on your hands.’
You see, I’m not supposed to work now I’ve had Boo.
But I do.
I do, partly because I have to. We would lose our home and probably have to move out of area if I didn’t work. (Not big deals perhaps, but to be frank, I can barely contemplate changing our brand of margarine given all the change we, and especially my daughter, have had to live through in the last 18 months.)
I also work because I have a career that is unusual in that there is no going back. If you leave, you’re out. It’s a career that you embark on young (ideally) and stay in until you die. This is scarcely an exaggeration. I would be giving up an awful lot (years of debt, education and training) if I walked out of my job now.
And I want to work. It makes my life harder, in many ways, but my own mental health (fragile at times since having Boo) benefits greatly from having something else to absorb my attention. I like my job. A lot. Moreover, I’m fortunate enough that my profession is quite flexible. A good part of it is rigidly timetabled and structured, but much can be done remotely and flexibly. I work almost every night when the kids have gone to bed and at weekends too. It’s not everyone’s cup of tea. And it isn’t easy. But it feels right for us.
Battling to get appropriate childcare for Boo so that I can work has been challenging. My plan was always to send him to the private nursery his sister went to from the age of 6 months. It served her well and the nursery supported us all so well when Boo was born so unexpectedly, so early last year.
He is there now, but getting the support that he needs (and that the nursery staff need to support him in meeting those needs) hasn’t been entirely straightforward. Initially, we put in for an inclusion grant from the local council for him. Lots of meetings and letters later, we were lucky enough to get enough money to pay for a support worker at the nursery to come in so one of the regular members of staff could spend 2 hours each day he’s there 1-1 with him. This is essential given that Boo can’t move unaided, can’t feed himself or get at things without help. They were trained up in his daily physio and incorporated that into that 2 hours.
But 2 hours wasn’t quite enough and we had to apply every 8 weeks for the funding, which from everyone’s point of view was a major hassle. As if CP and epilepsy are like having a broken leg. (In 8 weeks it might have disappeared, don’t you know. We wish. We wish…)
Then we learned of a fund for children with acute medical needs. Boo fitted the bill for that. More forms, meetings and letters. And eventually he got that and was awarded 3 hours of 1-1 a day. But because this scheme and the other we’d tapped into had different deadlines, and because applications to both schemes couldn’t be held simultaneously, he lost his 1-1 for 3 weeks.
In those 3 weeks, I nearly lost my mind, keeping him in nursery as little as possible, working through the night to keep him with me, looked after, with his physio done. (Never mind that we have to pay for his nursery place for 51 weeks of the year (despite taking holidays), and that we pay a day rate that runs from 7-7 even though the longest he is ever in there is 08:30 to 16:30 and many days he has to be taken out for hours for appointments. A lot of money is made out of Boo at the nursery that isn’t being spent on him.)
Anyway, we were extremely grateful to have gotten the money. But even with the acute medical needs fund we have to reapply every 16 weeks. Because obviously, he’ll start doing an Argentine Tango in November. We have no security. No reassurance long-term. I know we’re OK for the next two months. After that? Who knows.
But I am not complaining. Really. I love the nursery; Boo is looked after well and we work together with the staff as a team. It helps that we have a longstanding relationship with them. And I know things could be worse. So much worse. Like a friend of mine who has been quoted a 2-year wait to get any 1-1 for her son at nursery. Let me just type that again in case you missed it. She has been told (she is in Hackney) that she will have to wait two years, two years away from a career that would no doubt be closed off to her forever if she left, despite the fact that she is bloody good indeed at it.
Parents of kids with additional needs often need to work. They need to keep a roof over their family’s head. They need to pay the bills. And they need money to buy the many, many, many bits of equipment our kids need to function to their potential. Equipment that gets at least two zeros put on the end of what you think it might cost because it’s for kids with additional needs and the model is that it will be paid for by your PCT or LEA. It rarely is in my experience. We have had no specialist equipment given to us for Boo so far (he is nearly 18 months old). We haven’t even seen an OT yet despite him being classed as an urgent (i.e. at risk of scoliosis and ruining his parents’ backs) case, and we have been on other waiting list for therapies/equipment for 8 months now.
Oh and then there are those parents who not only need to work, but actually want to. For whom work is a vocation, a lifeline, or let’s be honest here: a form of respite.
From September 2014, the new pre-school LEA nursery funding in the UK is being extended to children in receipt of DLA. This will make nursery a little cheaper for parents of children with special educational needs. But won’t help at all with getting the 1-1 our kids need and, dare I say it, deserve. This won’t cover the additional costs nurseries incur when they needs to employ extra staff to work 1-1 with our children.
This troubles me. Greatly. The inconsistencies trouble me. The lip service paid to inclusion bothers me. So along with the fabulous Mama Lewis and Tough Little Cookies, I am trying to draw a picture of the inclusiveness or otherwise of pre-school education when it comes to children with additional needs. Many of you have already and kindly responded to tweets I’ve written on the subject, but we’re keen to get as broad and as accurate a picture as possible. So if this post speaks to your situation, I’d be grateful if you would leave a comment below or drop me an email.