Us vs The System

Kelly Autism Leave a Comment

Ever sat in a room full of people all there to discuss your child and cried? I have. I’m sure it happens often, although I was determined it wouldn’t happen to me. Then it did.


So, we finally had the big EHCP meeting to discuss the draft version. This is the one where all the people involved with compiling reports for the assessment get together and talk about whether or not the proposed plan is suitable and will meet Tink’s needs. This was also the first (and likely only) time we would meet the Principal Officer from the local authority who compiled the plan. We took along a wonderful lady (I hope I can now call ‘friend’?) – Jo*, who works as an independent support for people like us, who have no clue as to what we’re doing. Jo has been there, done that and most definitely has the t-shirt – several, probably! She also has a heck of a lot of knowledge on the legalities, which helps!

We walked into the meeting room, which was, um, cosy! The educational psychologist (we’ll call him Mr W, although I won’t say what the W stands for!) was already in place, scrunched up the corner where he could hide a little. Tink’s lovely teacher and teaching assistant were there as was the school’s inclusion officer (that’s the latest name for SENCo, don’t you know?) Mrs PO was running a little late as was the lovely chap from the Communication and Autism Team (CAT) – I had a horrible feeling he wasn’t going to come at all, but he did! (And then he had to leave after about half an hour, and my heart sank, as he had said more things with value than probably anyone else by that point!) Eventually all were present and we did that horrible thing they make you do at courses, where you go round the table and state who you are and what you do. I tried to hold my head high and state, with great confidence, “I’m Kelly and I’m Tink’s mum!”, but it’s so hard to do when feeling ever so slightly intimidated by all these professionals, who have probably attended countless versions of this meeting. I had to keep telling myself that we are Tink’s parents and we are the people that know her best. Just because being a parent doesn’t come with a degree, or letters after your name, or a suit and a laptop, doesn’t make us any less valid.

Mrs PO kicked off with a belter of a question – she didn’t want to ease us in gently, it seems. “Which school would you like named on the plan?”  Errr…. I had already tried to explain in emails to her that we weren’t yet able to make that decision until after this meeting, once we’d had chance to speak to the professionals and get some input. I had already told her that as we have never even seen a special school, we couldn’t possibly know if that’s the right kind of setting for Tink. She obviously doesn’t read her emails properly. I said that we think we’d like her to stay where she is, but on the basis of her repeating the nursery year before starting reception. Everyone seemed to agree with that and there was almost a collective sigh of relief that this plan was a good one. Then Mrs PO threw a spanner in the works when she told us that Tink would have to jump a year at the next transition, so when she moves from the infants to the junior school. Frankly, I think this is most likely, complete bollocks. Her reason was that, as children in England have to remain in education until they are 18, that Tink would turn 18 with a year still to go. I don’t think that’s a good enough reason. For one, if I don’t think she’s finished her education, I’m not going to let her leave school, 18 or not, assuming she’s at an educational establishment that will let her stay on if needs be – and that’s a discussion we’d be having right at the start, before she even moves up to senior school. For two, if she was at a primary school, so straight through from reception to year 6, there would be no transition, so surely she’d stay in the same year all the way through, even if a year behind her age peers? And for three, it’s a bloody long way in the future and all I care about right now is the next couple of years. None of us has a crystal ball. Maybe, just maybe, we decide that actually, Tink’s not going to cope in mainstream once she’s had another year of nursery and we want her to go to a special school anyway.

However, it was decided that, for now, we’d name her current school and that she’ll carry on in nursery for another year.

It continued quite well, with Mrs PO reading through the draft word for word; reading through the statements we’d written about Tink and her abilities and difficulties, and what we want for her future. Then we moved on to the areas of strengths and needs which were compiled from the professionals’ reports. There were a few, minor adjustments to be made here and there: things that Tink maybe couldn’t do a few months ago when the reports were sent in but that she can do now.

We moved on to the next section, where Mrs PO had set out long and short term outcomes for Tink. Here, again, I had made some notes on things that I felt were missing and adjustments to a couple of things that I feel she is already doing. Mrs PO seemed quite happy to add these in, and Tink’s teacher also had a few comments to add.

Finally, we reached the section detailing the Special Educational Provision. And this is where things started to get a little more tense. I could actually feel a change in the atmosphere in the room, I’m sure. Or maybe that was just me, steeling myself to speak up in front of these people and say, “hang on! I don’t think that’s quite right.” There were a few areas in this section that I felt needed some clarification. I had done my research, and I knew that phrases such as ‘access to’ and ‘opportunities for’ are too vague. These are phrases that featured in Tink’s draft, and I knew I needed to draw attention to these. So, we had a few discussions about some of these points, with Jo really coming into her own here! Tink’s teacher and inclusion officer were also great, and explained some things and argued for others. At one point, Mrs PO stated that every nursery will be doing X, Y and Z as part of the EYFS anyway, to which I replied, “every GOOD nursery. They’re not all doing it. I can say that. I know.” And she just looked at me like I had two heads and how dare I have an opinion on such a thing (although I’m more than qualified to, not that she knows what I do for a living!). So, yeah, I don’t think we’re huge fans of each other already…

And then, I raised THE question; the one about the glaring omission – the one about Tink having a one-to-one support full-time. So far, she has pretty much had one-to-one every morning she’s at nursery, which the school have provided out of their own budget and because they know it’s the right thing for Tink and for everyone.  Because of this, she has made progress – good progress – in many areas and, I don’t doubt, has avoided having too many anxious moments and meltdowns, which could, quite possibly, impact on the whole group. I’m certain it’s stopped her eating too much sand and play dough – something else she does when she can. In other words, it’s kept her safe.Everyone around the table, apart from the delightful Mr W, agreed that full-time one-to-one is what she needs going forward. But Mrs PO refused to agree it. She said, “I will not put that in.” (or words to that effect. I forget exactly. By this point, the red mist had started to descend…) Apparently, Tink’s assessment doesn’t show a high enough level of need to warrant full time support. It only gives enough for a (fairly paltry) amount of extra funding, but way short of enough to pay for a full time assistant. The issue I have, is that this assessment tool that is used (it’s called a CRISP) is not wholly applicable to children with ASD and is more suited to children with physical disabilities. And since each child with ASD is very different from the next, it is very hard to judge need on such a broad basis.

Mr W argued that the trouble with giving children one-to-one support full-time is that they become too dependent on that person and don’t learn independence and are unable to cope without them. My argument is that a support person doesn’t have to be glued to Tink’s side every second of every day, but is there to assist Tink as needed; for those times when her anxiety is getting the better of her and she needs that reassurance that it’s going to be ok. As these times are unpredictable, that support person needs to be available all the time, not just in the mornings! And if Tink needs help with accessing things, or toileting (which, as she’s still in nappies, she does!), or time with someone away from others to really focus and concentrate on a task, which, according to her outcomes and the provision IS what’s needed, then that person needs to be available. Are we supposed to expect Tink not to have her nappy changed in the afternoon as there is no extra staff?

Mrs PO said, with a smile, that it’s all fine though, as Tink will only be doing mornings at first, so she can have full-time support within the budget given. “So what happens after Christmas, when we expect her to start attending all day?” we all asked. Well, there isn’t enough money for full-time support. The inclusion officer asked if she can apply for more. “Not without being reassessed,” Mrs PO replied. “And the levels of need must be high enough,” she added. “But, doesn’t the fact that she’s had the support and made progress this year show that she needs it?” asked the inclusion officer. “No. She has to be reassessed.” (Can you see why things were getting a little tense?)

I think it was round about now that I burst into tears. How very embarrassing. But not totally unexpected. If crying were an Olympic sport, I’d be our top medal contender. I had been biting my tongue for a few minutes, but I couldn’t hold it in any longer. I just felt completely frustrated with the whole thing, my head was really hurting and I needed the loo. I think Mrs PO realised we weren’t really getting anywhere and stated that there was enough funding for Tink to have one-to-one support until December, when there would be a reassessment to see about extra funding. Jo asked if we could have that written into the plan. Go Jo.

That was pretty much it. Jo said as these things go, that was one of the most straightforward ones she’s ever attended. I believe her, but if that was a ‘good’ one, I dread to think how families that don’t have good ones must feel. I came away feeling pleased that the plan covers everything we can think of at this time, but mightily annoyed about the lack of one-to-one hours, and the uncertainty as to what will happen in the new year if her needs assessment doesn’t come out high enough. Now I am wondering if we have made the right choice in wanting her to stay in mainstream…?

*Name has been changed. She knows who she is!



Kelly is a mother of two – her son H and daughter Tink. H is home educated, Tink is autistic. Kelly is a self-employed Virtual Assistant… Life is busy!

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