The Chaos of SEN Childcare

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.

or

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.

Thank you.

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12 thoughts on “The Chaos of SEN Childcare

  1. itssmallsworld

    This is a really well written post and I relate on many levels. I went back to work when Small was 1 with the support of my HW and my husband as at first Small did half days and he would have to pick him up. We tapped into a small fund to help fees – for SN kids in crisis it turned out – which stopped abruptly after 9 months. Our nursery have been amazing though. Small has a wonderful 1:1 who also acts as our DP provider and they work with therapists to do his programme. We have worked with a combination of SS and local charities to make sure he has the equipment he needs there as well as at home. We were lucky with the nursery as it is (was) council run. The first two we saw quite clearly didn’t want (and didn’t know how to) take on a child as complex as Small. For me it’s the guilt of being a working mum to a SN child but, for all the reasons you mention, I do not want to give it up. Good luck with finding out about what I suspect is very patchy and varied provision up and down the country.

    Reply
  2. mrboosmum Post author

    Thank you so much for your reply. I’m so glad Small got the support he needed, much of it, I can see instigated by you and the nursery. The nursery sound very good. I’m currently thinking we may have to go down the charity route for seating for Boo. He is getting desperate and while I have sorted something at home (through lots of consulting folks like you online, a great special needs company and rep and a chance lot coming up on Ebay), he hasn’t got anything there yet and I just don’t think we can wait on the OT referral any longer.

    One thing I realise now that I left out of the post is how good it can be for our kids to be in nurseries. I feel the guilt too, heavily sometimes, but I see Boo’s social development since being around lots of kids his age and it is really remarkable. I hope that’s true for Small too.

    Thanks again.

    Reply
    1. itssmallsworld

      I forgot that too! I go on a lot about the benefits. They push him to do work harder (in a good way) as they are not his mum. They have been instrumental in getting him to pick up his cup and a loaded spoon (ideally not at the same time…). He loves the other children being around him and the kids include him in what they are doing which I love. And they do loads of messy play with him, thank goodness :-). Its a mainstream nursery which I really wanted to do, I just think it’s good for all parties to mix. He has come out of himself and become a bubbly little boy and I think nursery has featured heavily in making that happen.

      Reply
  3. Stacie Lewis (@MamaLewisBlog)

    Great post – your story is one that more people should hear about. I don’t think people have any concept of how difficult it is to not only get childcare for a child with complex needs, but get the support whilst in childcare. And it is so beneficial. I don’t know what I would have done without my daughter’s nursery.

    Reply
  4. uncheshire wife

    I think it’s amazing you work with such a struggle for help going on all of the time. What part of the country are you? I am North West, do you want me to find out what happens up here for 1:1 nursery.

    Reply
    1. mrboosmum Post author

      Thanks for the reply. It’s a struggle sometimes, I tell you. I am in Surrey and have a reasonable grasp on things here but have no idea about NW. Would be very grateful for any info you can pass on. The good news is that there are good examples of good practice. I think we all need to know about them and put pressure on those LEAs that don’t have such a good track record.

      Reply
  5. CraftyTeacher

    Sadly, it doesn’t get any easier as children pass through the education system. I teach in secondary mainstream and there are so few places for those students with very complex needs across the county and region that they may just not go to school. I wont give the town or region as i know colleagues visit this site! The school I teach at has a fantastic nurture group to support transition at key stage 3, but I still see very limited class room support once they do transition into mainstream lessons. The best of us would love to teach your children. It would be nice to be allowed to do it properly!

    Reply
    1. mrboosmum Post author

      Thank you for reading and commenting (and apologies for being so caught up in things that I’m only replying now!). It is great to get a teacher’s perspective on this. I have a friend who teaches primary and who has just got a job in a school with a SEN unit specialising in caring for and educating kids with learning difficulties, especially ASD. It can only take a few children a year. If only such support was more widespread. I can see we have a lifetime of battles ahead. But I’m not giving up. And will keep banging the drum of kids, parents and the teachers who are so important to all our lives.

      Reply
  6. womanunadorned

    Great post, and I do so connect with it! My daughter is a teenager who suddenly developed problems in mid-teens – so not a little one born with them – and I have also battled endlessly with systems that assume that I do not work (or should not work). Endless appointments and phone calls, always in the middle of the working day and without any option to rearrange. And with no crisis care available I have to be prepared to drop work every time she falls sick again. I realised eventually that it was better not to say that I work because I was getting nowhere: it most definitely did not produce sympathy! If anything it seemed to confirm some people in their suspicion that I was not a very “committed” mum, willing to do anything to support my daughter. I too do a job I love, and have a huge amount of experience tied up in, and we also need the money to survive, so I have hung on by the skin of my teeth and am often exhausted.

    Reply
    1. mrboosmum Post author

      Sorry it’s taken me so long to reply. I totally get it, and understand something of your challenges from reading your wonderful blog. What can we do but keeping hanging in there? You are right to point out though that this is not just a problem with little ones. I think some of us think, oh well it will get easier when they’re at school. I have nearly 6-year-old who has no health problems or additional needs, but am savvy enough to know that’s not necessarily true. Good luck! And thanks so much for commenting.

      Reply
  7. Pingback: Nursery provision for special needs – the good, the bad and the ugly! | tough little cookies

  8. mrboosmum Post author

    Reblogged this on Premmeditations and commented:

    I can’t believe this post is a year old. Since then I have been proud to give evidence with other parents and disabled young people to the Parliamentary Inquiry into disabled childcare. And I am still at a loss. Our own childcare situation has worsened since in ways I haven’t explained fully on the blog and may do so more. Maybe we will get the statement we have applied for. Maybe it will help. The new SEND reforms are supposed to make a difference. I hope they do. But I fear it will take a long time to put into practice the promises it makes and still longer to change the attitudes of those who think I make a choice to work (interesting word – although I accept many in my position have no choice at all, and I realise I am lucky). These people also clearly think I made the wrong choice and so must live with the consequences. I feel at an impasse. I feel lost. I feel like I can’t go on like this some days. But I feel I owe it to my kids to keep our home, keep within the area do my daughter can go to school with the friends. I feel lost.

    Reply

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