Tag Archives: SEND

Other days

Some days, when the sun is shining and I don’t expect it to and we have a good appointment (or better still no appointments), I feel unbelievably, superhumanly lucky. I feel lucky that I have two beautiful, caring and lovely kids. I feel incredibly lucky in these dark days to have a comfortable life.

I feel lucky that Boo survived his premature birth. Lucky that he survived meningitis. Lucky he survived sepsis and a massive brain injury (PVL). That despite the severity of his cerebral palsy he has words – indistinct and hard won words, but words, nonetheless. I feel lucky that he is so happy. That he and his sister adore each other.

But then there are other days. Days when people say or do stupid things because you live in a world as alien to them as Mars would be. Days when equipment breaks, or having waited for months for it to arrive (always months longer than you are promised), it comes with a vital part missing or bent by the courier who shows his disgust at the weight of your child’s parcel by banging it on your doorstep. Days when services tell you about how the most recent round of cutbacks will affect your child.

Days when you send umpteen emails chasing things for your little one that were supposed to have arrived or been put in place months earlier. Days when people tell you they will look into it and get back to you that afternoon. (You and they both know that means three weeks when you next contact them.) Days when you register that some of these people are upset by this sorry reality and that others don’t, or have learned not to, care.

Days when you cannot believe that you are still trying to get put in place one of the therapeutic provisions set out in your child’s statement 18 months after the reports setting out the requirement were first submitted. Days when everyone tells you how awful this is. Days when still nothing happens. And then to top it all, days when the lift up to your front door fails and two organisations argue about who is supposed to fix it while you and your child’s ability to get in and out of the house is precariously dependent on how much your back hurts.

Days like these are the cluster headaches of the special needs world. Everyone gets headaches – just like we all have bad days – but few can understand the head splitting intense discomfort produced by these monstrosities. There is no easy cure and if your sanity is to be preserved, to an extent you just have to accept these unpleasant realities.

But it’s hard to accept things that are bad, that even hurt, your child. Really hard. As a family, we have all learned to live with cerebral palsy. That was the easy bit. It’s all of this – all that comes with CP – that I will never get used to.

I know some day, maybe even tomorrow, I will feel better again for a while. But not today.

I am lucky, but I am also sad, disappointed and frustrated that life is like this for Boo and for many, many others like him.

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Making a draft statement: let battle commence

And so, finally, it arrived. The draft statement. The piece of paper I have been looking for on the doormat for a week is here. I got back from work at 7 last night and it was on my desk waiting for me.

I knew I didn’t have time to read it properly, but I just had to know had we got more 1:1 for Boo. Had we got what he needs? I was prepared for it not to have as much as we’d like, but I expected more. Everyone involved in his care and at his nursery knows that this is what he needs.

But of course, we didn’t get what he needs. What we got instead was a copy and pasted, poorly constructed document that is so drafty you can probably feel the gale blowing even if you are reading this in Scotland. (I am in the South East in a LA authority which shall, for now, remain nameless, although that will change at some point, I’m sure.) There is, in fact, no mention of quantified 1:1 support anywhere in Boo’s draft statement although the phrase is littered in the appendices that health professionals wrote.

The draft statement commits the LA to nothing. Boo’s needs, many and complex as they are, are mostly documented in part 2, but provision is not matched to these needs and is only quantified once. Once! Apparently, he needs 6 OT visits and one review. A year? A month? A term? Can you not see what my 6-year-old could? That this is important information. That this sentence of the statement is utterly meaningless without a specified timeframe.

I then look closer. There is no mention of flat-level access. Boo is a child with no indepdendent mobility who will be a wheelchair user (as documented in the statement) and in the facilities section of the document there is no mention of flat-level access or to an accessible changing area/toilet. No mention, as several appendices make clear, that he cannot feed or drink on his own. That his drinking, especially, has to be carefully supervised?

Who wrote this statement? This is the worst cut and paste job in history. You know the story about monkey with typewriters, who, given long enough, could write the complete works of Shakespeare. Apparently the same isn’t true of this particular statement writer.

So I phoned his case worker. A very nice, competent professional. She explained why the lack of quantification might be there: because it isn’t in the reports completed by the professionals (they, incidentlly, are actually not asked to quantify it in those terms, as two have pointed out to me today); or because the LA has in mind a specialist setting for Boo (one I know none of the healthcare professionals involved in Boo’s care or we feel is suitable for him) where therapy is delivered on site (although actually, it still should be quantified even if they ahev that setting in mind, you know lovely LA).

And then came the worst news of all. I was also told categorically that we will never get more than 15 hours 1:1 support for our son until he is 5. I was told, somewhat condescendingly, that we had started this process rather early. I in turn reminded her that statements and new EHCP start from 0. It’s clear what the LA thinks: I need to stop work to look after my son. He needs to be in nursery the bare mininum of time. Never mind the huge benefits (social, developmental, cognitive) to him being in an educational setting. Never mind that we know children, 3 of them very well, in 3 other LAs in the South East who have complex disabilities (2 with CP) and in in mainstream nursery who get 26 hours of teaching assistant support via a statement so that their children can access the EYFS curriculum. That’s not how our LA does it, apparently.

I hate the phrase postcode lottery. I hate the reality even more.

And so now we enter the negotation phase. We have to write the statement for them. Do their job for them. We have to take all the info they forgot to cut and paste in the appendices and add it in (cause you know, we are tripping over time as parents of a disabled child). We have to quantify things for them. And they will consider our recommendations and judging by the conversation with the case worker, they will surely reject them.

We are headed for tribunal. I know it. I have recommendations for excellent solicitors with proven track records, but this will cost us more than £10,000. I know there are legal aid options. I also don’t know any that have been successful.

We are trapped, locked into a battle with the place we live. I wish we didn’t live there. I wish we didn’t live in the LA with such an appalling reputation when it comes to SEN provision. What can we do? Move? Leave my job? Lose our home? I feel trapped.

I haven’t slept properly in days because Boo isn’t sleeping either at the moment. I am so overstretched at work that I cannot cope. I am typing this in my office in floods of tears, hoping no colleague knocks on my door. I can see depression or worse beckoning me. I am going to crash. Just at the time I most need to help Boo. I can’t crash. Not until we’ve got him what he needs, at least.

I knew this would happen, but it doesn’t make it any easier to accept. I have never wished Boo was different. But right now I wish that almost everything about our lives was, most of all where we live.

You are crippling us local authority. You are destroying a family, our health and our happiness. And most of all, you are failing in your responsibility for a young, vulnerable child. I hope you can sleep easily at night.

I know I can’t.