Tag Archives: statementing

Fighting Talk

On Saturday, like every Saturday, I took Boo swimming. It is one of the highlights of my week. He’s such a water baby and to see the incredible joy he has doing things in the water that he can’t do on dry land is just … well … so amazing words fail me. But this Saturday, I wasn’t so excited.

You see we were with a different group of kids and parents for the new class term. Boo is at the limits of what he can do in this mainstream class, which now involves diving off the side and running on a float. So we can’t yet move any further forward. I suspect we’re at the end of the line of these lessons. I mean, Boo can’t even sit on the side safely. But his teacher is brill and we adapt things. We decided to repeat the level we have just done with a new set of parents. Boo wouldn’t care he was repeating and it would be good for him.

But I was dreading it. There would be the looks from parents who didn’t yet know him. The explaining to do about why my little boy can’t stand. The questions to answer. The ‘what’s wrong with hims’.

We had some curious, if well meaning, looks throughout the class, but it went fine. As we were getting ourselves dry afterwards a parent asked if we were new to the class (clearly her way into finding out what Boo was all about, I think). She was nice and I just explained why were we repeating the level. I told her that Boo loved swimming and since there’s no hydro in our area and no special needs classes for kids his age locally we were sticking with mainstream lessons as long as we could get away with it.

The another Mum joined in. There was something about the way she spoke to me that made me understand that she lived in or on the periphery of our special needs world. You can always tell. She was confident in our company; she looked at Boo unfazed. Either she knew a child with additional needs well or worked with them. I just knew. Thirty seconds later all was revealed when she said she was an Educational Psychologist (or EP to those of us who live in this world of SEN acronyms). She was infuriated that Boo doesn’t get hydro. In her area, just over the border, she explained, Boo would.

And then she tried to spur me on. ‘This is just wrong. But it is about Boo’s needs you know. If the NHS doesn’t fund hydro in your area, then you should fight them. If your physio supports you, get her to write on your behalf to force them to provide access to a private pool. It’s discrimination. Honestly, the parents who fight the hardest and shout the loudest get the most for their kids.’

If I’d had a pound for every time someone had said this to me since Boo’s birth…

Of course I’ve looked into ways of accessing hydrotherapy. And of course his physio supports us and would testify to the benefits for Boo. But he furthest I’ve gotten in pursuing this is to be given the number of a private physio who charges an eye watering per hour fee for hydro once a month (and we pay a small fortune for swim lessons now, let me tell you).

I thanked the EP for her advice and support and explained that I would get onto it, but that we were fighting two other big battles at the moment (statementing and social services over house adaptations) so it wasn’t at the top of the list. She understood. She knew how hard it was. ‘But keep fighting’, she said.

I left feeling grateful for the kindness of strangers.

And sad. Really, really sad. I tried to work out why and think I now have.

You see, I realise that I have had it with the fighting talk. Absolutely totally and utterly had it. Don’t get me wrong, we have had to fight for virtually everything for Boo: to get onto waiting lists; to get Boo off them to actually see someone; for virtually every piece of equipment he has, including his Bee seat (that fight nearly broke me) and his adapted buggy; to get him 1:1 support in nursery; even down to getting a bloody pair of Piedro boots. I could go on.

Of course, we’re not alone in this. You need only look at the special needs equipment online forums to see how hard people have to try and how much money they have to save to buy even the basics in our children’s lives. These forums are totally great – I use them a lot myself and have bought lots of essential kit for Boo from them second hand. But they are also incredibly frustrating and occasionally downright uncivil.

Here’s a common scenario. Parent A at the end of their tether waiting for something they have been told is essential for their child’s health and happiness asks if anyone has one to sell on said forum. People jump in and say no but express sympathy with Parent A for the ridiculousness of their predicament. Then Parent B jumps in and points out, in the spirit of helpfulness, that Social Services or their PCT should provide this equipment free of charge. Of course Parent A knows this and has already exhausted all lines of enquiry. Parent A explains this. Then Parent C comes in and says Parent A should fight harder. They should make them get it for their child. Parent A either answers back that their LA or PCT doesn’t work like that or silently crumbles.

Because you know what? There is NOTHING national about the National Health Service. And you cannot emphasise the LOCAL in Local Authority enough.

Now I know everyone is trying to be helpful, but I wonder if we are, really. Of course, we are parents. Of course, we would do anything for our kids. Heck, in my darkest moments with Boo, when we didn’t know if he would survive or not, I begged any god that would listen to let me die if he would only live. Of course, we will fight for them. But is this fighting talk helpful?

I remember talking about something similar (although in other ways very different) with a friend who had a close relative in the advanced stages of cancer. She hated the fighting talk too. Her relative would not win this particular fight. That didn’t mean she wasn’t the most poised and determined of women. That she didn’t cope with her appalling situation with a courage I don’t know that I could ever possess.

Here’s the truth: the language of fighting turns us into winners and losers, because that’s how fights go. This cannot be right. Surely, we are in this together.

What if you can’t persuade the LA to support your child in nursery? What if you can’t get them to buy your child Piedro boots? Are you a bad parent? Is it just that you haven’t fought as hard as everyone else? Of course not!

And you know what really gets me? What really, really gets me? It’s that we have all internalised this language of fighting so much, become so embattled in our special needs world that we accept it. This is as true for me as anyone else. My last post about our statementing debacle was called ‘Let Battle Commence’.

Today I want to look at things differently. Today I want to ask: what is so wrong with this world that simply tending to the need of some of society’s most vulnerable people has become a battleground?

The minute we start using the language of fights and battles we become part of the problem, turning our lives into a survival of the fittest (for fittest read: most vocal, most persuasive, most legally minded, most litigious, most desperate) parents for the sake of our kids. This cannot be right. Can it?

But I fear it cannot be undone either. I wrote this post because I feel I’m done with fighting (I’ve always preferred the more American sounding word advocating anyway). Because I am battle weary. But I can’t let Boo down. I have to press on and charge ahead. And the minute I stop writing this post, I have to write a covering letter to our Local Authority about Boo’s draft statement, which will quote case law and the Equalities Act and which will be laden with fighting talk.

And you know what? I hate it. I wish things were different. I wish I knew what to do about it. I suppose the only thing we can do is make sure that our battles with systems don’t force us to battle with other parents like ourselves.

Each battle for every one of our kids has to been as a battle for them all. Otherwise, what price victory?

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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.

Good News Friday #72-75

Honestly, I can’t keep up lately. There is so much I want to tell you about, good and annoying, but I just don’t know where the time is going lately. Well I do – appointments and work – but I am in denial. So it’s a good time to pause for thought. A time to remind myself, it isn’t all chaos here in Boo land. And the good stuff keeps coming.

So, here are some good news highlights:

1) Running: I ran a half marathon last weekend. I know I don’t post pics of me or identifiable pics of the kids on here, but those few of you who have met me in real life can testify to the fact that I don’t look like a runner. (In fact, I am now on a post-run diet.) And I struggle to call myself a runner. Running is what other people do. But last weekend, after months of following the most skeletal half marathon training I could and still have a reasonable chance of crossing the finish line, I did it. In 2 hours 12 on a hilly course. I am thrilled. Running is so important to me. I can’t say I like running itself that much, but I like the enforced me time, I like pushing myself in recognition of the challenges Boo faces every day, and mostly, I like raising money for good causes. Which I did. I am so grateful.

2) Statementing: Because of a not so happy accident I regaled on the blog’s Facebook page, I found out that Boo is going to be issued with a statement. We hope to have it next week. Of course, we can’t know what it will say and the battles may only just beginning, but our hope is that it supports him better and for longer in his nursery setting. It has been quite a journey so far, I hope the road ahead isn’t too long.

3) Boo: I have about 5 Small Steps Amazing Achievements posts I have to write to tell you about the new things Boo is doing. I don’t want to steal the thunder of the posts I want to write, but don’t set the bar too high. It’s not like he’s learned to walk, or sit, or roll. But you know what? Those inchstones keep coming lately. Little surprises, things I’d almost given up on are starting to happen. Odd words I wondered if I’d ever hear, gestures, small acts that are a very big deal in our world. Dare I say it, Boo’s on a bit of a roll. And it’s a fun ride to be on, let me tell you.

I hope you have lots of good news to share. Do let us know what’s going on in your world. We love to hear from you!

 

Today…

Today we have our first visit to a local school (our daughter’s) to talk about Boo and whether they could accommodate him or not when he starts reception in two years time.

Boo is two. Yep: two.

This feels wrong. He is so young. But we have been asked to start this process now, because we live in a LA that says in hushed tones and not to be repeated words, ‘we just don’t have schools for kids like him here’. ‘They might have to build stuff for him.’ ‘It’s going to take time to work out what to do with him.’ My lovely little boy is reduced to the status of a problem in a matter of sentence.

Today, I wish my crystal ball was working, so when the inevitable questions arise – will he be able to hold a pen, walk, or use the toilet independently – I will know for sure what to say. (I think I know, but can’t say for definite.)

Today I feel a little bit sick because I know this school, a lovely, 3 minutes away, small, modern flat-level, high-achieving, nurturing school is not right for him. I know we are just playing a game. Having to look at schools so we can say to an unsympathetic LA that will likely try to push us to conclusions we don’t agree with, ‘No: we looked there. It isn’t right for him.’

But where is right? Are we chasing something that doesn’t exist?

Increasingly our options seem to be out of county. That involves travel for Boo and tribunals for us. Battles I can’t face. Not today anyway.

Today, just today, I would like to just be able to exist in the now. Not have to think about the past or worry about the future.

I wish today was tomorrow. And then it would be done. Until the next visit, that is.

Making a Statement: Part III

As promised, here’s the latest installment in our statementing journey. You can read my previous two posts here and here (they’re short). But if you’re even shorter on time the gist is that we feel that the support Boo is getting in nursery is not up to the task of meeting his needs. This isn’t about school yet or even what kind of educational setting  he would best thrive in (mainstream, SEN, mainstream with SEN unit – I make it sound like we have an embarrassment of riches don’t I? – that’s not so, sadly).  For now, it’s about getting Boo’s needs formally documented, getting a binding agreement of how to start meeting those needs and eliminating the uncertainty we currently live with that any support he gets could be withdrawn at any time.

We will be some of the last people to go through statementing now that EHCP is in place. It was a conscious decision on our part to enter into a system that was tried and tested and known, rather than gamble on something that looks good but about which people’s knowledge differs scarily widely.

Timing it all to meet the deadline before EHCP came into force meant we got the LA’s agreement that they would assess Boo for a statement in late July. Just when half of the NHS, all educational settings and many LA folks are on holiday and us, of course. Fabulous timing, Mrboosmum!

I emailed everyone as soon as I knew that reports would be due on the 28 August, not wanting then to have to wait until the paperwork arrived from the LA. If I hadn’t been so proactive, we wouldn’t have a report from Boo’s fabulous conductive education setting, which he attends one morning a week with us and which turned round one of the most detailed reports I have read about Boo in a day.

I had gathered as much documentation together as I could prior to putting the statementing application together, so was less worried about the health side of things. I hope I’m not being naive about that. Since his birth 2 years ago we have amassed one massive A4 ring binder of Boo reports already and I have about another half a folder to file.

But I was concerned about the Ed Psych report. We had never met an Educational Psychologist before. I was led to believe it would be someone from the Portage team, but as Portage is sadly ending for us, I wasn’t sure. As week after week of the school holidays passed and our holiday loomed I felt more and more nervous we wouldn’t get to meet her or him before the deadline. This wasn’t someone I could approach myself as I didn’t even know who we’d been assigned to. I had screwed up by awful timing.

And then 3 days before we went away on holiday she rang. We explained that we would be going away (our LA officer had suggested we might have to drive the 5+ hours back from holiday to meet an Ed Psych because of the inconvenient timing of our application) and she agreed that was silly and that she would meet us at home the day before we went.

It wasn’t ideal. Boo was distracted. His auntie was visiting to look after his sister and he wanted to play not be assessed and talked about. She didn’t have time to assess him in nursery, which is a real pity. She was lovely but said she didn’t know what she could add to existing reports, since there were so many, or why we even wanted a statement given that Boo was in receipt of discretionary funding. I explained to her what I had previously explained at the Parliamentary Inquiry into disabled childcare. She heard the stress levels in my voice rise as they had in Parliament and she understood. ‘His current 1:1 does not meet his needs. He needs more. It needs more careful management.’ Yes! She agreed with us.

Going on holiday knowing that this meeting had happened was a huge weight off my mind. I drafted all our documents, a lengthy and sometimes painfully depressing task, and put it out of my mind (well, sort of…).

The deadline for all paperwork was last Friday. The meeting is on an unspecified day this week. Maybe today. I have seen the Ed Psych report now too. It is a full and accurate assessment of his needs. Boo is a bright boy there is no concrete evidence either way that he has a learning disability, but there is plenty of evidence that he is a little boy who wants to learn but for whom every aspect of the curriculum is difficult to access because of his physical disabilities.

I wish it said in black and white what the Ed Psych said in person. He needs more support. More hours of and more targeted support but, of course, these forms don’t work like that. Why ask professionals the right question when you can ask them another and make your own mind up about what the answer should be? The answer, of course, will be based on resources as much as if not more than Boo’s need, no matter what the rhetoric suggests. Maybe EHCP will be different…

Now we have to hope that the weight of evidence we and others have submitted will convince the LA to think about issuing a statement that addresses the impact that Boo’s CP has on all aspects of his learning and development. My hope is he gets more support. My hope is that his physical barriers to education are not going to be used as a way to write him off in cognitive terms or expectations capped. And my hope is that some of the strain and worry of taking on much of what should be happening in an educational setting at home might be alleviated. But all we can do now is wait and see. I’ll keep you posted.

Right on TAC

It’s been a while, I know. I’ve had a few days away with work. Exhausting and busy and hard work at that, but good and a much-needed break, if you can call a four-day 8 a.m. to 7 p.m. work trip on another continent a break. Well in our world, you can. No therapy and no appointments (although there were a few groggily answered transatlantic wake-up calls from people in the UK trying to book appointments with me for Boo at 5 a.m. local time). And it presented a much-needed opportunity to mainline black coffee (while hot, people!) and catch up with some of my closest friends, who I first met through work. It was good and it was fun, although I missed the Boos terribly, and I’ll admit that I have rarely been as tired since I came back. I’ll write more about that soon.

For now I wanted to let all the lovely folks who have asked on Twitter or email about our TAC meeting last week know how it went. There’s a short and a long answer. (Isn’t there always?…)

The short answer is: good. Better than we’d hoped. The long is: good. Better than we’d hoped. But crickey, we have a lot to do.

In short, then, it was a very positive atmosphere. Everyone clearly cares a good deal about our little boy and sees in him many of the things we do. Everyone praised his determination. He was called a ‘therapist’s dream’ on more than one occasion. Because you see, he so wants to learn; he so wants to impress. You do, Boo. You do. Trust me. 

It was also good to see people we see often and who work in the same building but rarely pass by each other’s corridors talking together. And it was just brilliant for the first time to seem the army of healthcare professions who helped him not as individuals, but as a team, sharing ideas about problems (getting appropriate utensils/cutlery, for example, to engage in assisted self-feeding) and services he needs access to now or soon (such as communication aids).

It was great to see them focus on what he could do, not what he couldn’t. It was fab to learn that they see no reason why he shouldn’t move to the nursery room to be with peers his own age (I was both thrilled and broke out into a cold sweat when then said this, I must admit). And most of all my heart skipped a beat when they said that there’s no evidence yet (things can change, of course) of cognitive disabilities. His speech delay and problems are, so far as all the flash cards and other tests put his way recently suggest, are motor in origin. When I saw the brain scan that showed the extent of his PVL (I can see it now if I close my mind’s eye), I could never imagined that this would be possible. One set of challenges, at least, seem to have been dodged. 

We even spent a bit of time in the meeting joking about things, too. Mainly about how nutty I am. About how crazily I research things; how I take pride in resourcing things that are ‘unresourcable’; about how I take my parent-carer homework very seriously (I even have a laminator now, don’t you know). But as the meeting went on, it became abundantly clear that we will need all that nuttiness and a whole lot more over the next 1-2 years. Because finding and getting others to agree on the appropriate educational setting for Boo is going to be, in the words of someone at the meeting, ‘one hell of a hill to climb’. If you have a child with additional needs, I didn’t need to tell you that, did I?

First there are the challenges of the new system for SEN provision. No statementing now, but EHCP, a new system that is not yet fully understood by anyone, so far as I can see, even those piloting it, or being piloted in it. Then there’s the particular challenge that Boo presents, the ‘square peg in the round hole’ analogy was used over and over. I may deck the next person who uses it (only in my imagination, of course).  

What do you do with a severely physically disabled child who seems cognitively age appropriate? What do you do with a child whose barriers to learning are primarily bodily? Technology can help meet those challenges, but it can’t provide the hourly physical care that Boo will need. Technology can’t do his his stretches for him, remind him to move the position of objects around him so his tight arm muscles don’t shorten. Technology can’t help him go to the toilet or play stuck in the mud in the playground.

People can do this. But getting LEAs to fund those people, for the right number of hours, the right kind of person? Well, that’s a different story? And do we even want Boo to be in mainstream education, which to my surprise, his developmental consultant thought we should push for? Do we want him to be likely the only severely physically disabled child in his school? The child who is always a problem from the school’s point of view (no matter how caring the institution might be).

We have been told that there is no school in our county that seems provisioned to meet Boo’s particular needs. Mainstream with support might be possible, even desirable, but persuading those we need to persuade will be tough. And finding the right mainstream environment would be hard indeed. But then SEN schools near us don’t seem right for Boo either. ‘They wouldn’t want him’, we were told rather bluntly. SEN schools in other nearby counties are not a square fit either (see even I’m using that bloody awful analogy now), and getting agreement for out of area funding and transport has been described as ‘very challenging’.

And then there’s the biggest challenge of all: Boo is not yet two. Not till next week, that is. He shouldn’t be two for three months, of course. And when I think back to Boo 12 months ago and Boo now, well… let’s just say a lot can change and it will. Often for the better, but also for the worst. No one in their right mind can predict anyone’s future when they are 2! 

So I now have an even longer to do list than normal. I have more appointments than ever in the diary or to make. Parents of children with disabilities who have opted for different educational systems to meet. School visits to arrange and liaison workers to meet. But it’s good to be prepared. And this matters too much not to take seriously. So I will do it.

But in the process of dealing with laws and LEAS and words that unhelpfully reduce our children to problems (putting the words Care and Plan into the EHCP doesn’t change that, folks) I don’t want to forget what the TAC meeting confirmed. Our little boy is bloody amazing. And we love him and will fight tooth and nail for him so that he has every opportunity to maximise his physical and cognitive potential, no matter what that is, or where it needs to be realised.   

 

 

 

When Your Crystal Ball Breaks

There are a few phrases that have started to stick in my throat since Boo’s birth. I’ve blogged about one of my pet hates before when I explained why I find it hard to ‘take each day as it comes’. Another that really yanks my chain is one I haven’t heard for a while now, but which is circling round my head endlessly at the moment: ‘Sorry, my crystal ball is broken.’

It’s a phrase that I heard a lot once upon a time, not so long ago. It was in many ways the signature note of the early months of Boo’s life. In my blind fear and panic following his brain bleeds, then the PVL diagnosis, then the likelihood of a cerebral palsy diagnosis and after the onset of infantile spasms, I often used to ask questions after Boo’s future.

‘What does this mean for him?’

‘Will he be able to walk?’

‘Do you think he will be cognitively impaired?’

‘Will he lose skills?’

‘Will he be able to talk to me?’

There were others, too. It’s still a bit too painful to write them all down.

The answer was always a variation on a theme. ‘Harumph’; ‘You got me there;’ ‘Who knows?’; ‘How long is a piece of string?’, or my least favourite, ‘Sorry, my crystal ball is broken.’

I don’t ask those questions any more, although I’d be a liar if I said I didn’t think about them all, and many others besides, every day. You see, I’m a planner. I like to map out possible futures for us all (I did this pre-Boo), so that I can be prepared, think ahead, have a strategy, make the best of things. It’s just not possible to do that with Boo. I realise that now.

But there’s another important difference that has moved my thinking on from the bad old days. Of course, I want Boo’s life to be a long, healthy and happy one. A life of cognitive and physical potential. But I don’t equate happiness with him being able to walk any more, or even being able to sit unsupported. Life is more complicated and beautiful than that.

And I realise now that one of the reasons I so hated hearing that everyone’s crystal ball was broken was not just because no one could give me any guarantees for the future, but because the very fact that I had asked those questions betrayed a certain naivety and even, perhaps, shallowness on my part. No one can predict Boo’s future; no more than they can predict mine. And even if they could, knowing whether or not he attends mainstream school or walk won’t tell us if that future is a satisfying one or not.

It took a long time, and I still live with my old thoughts quite a lot, but I have moved on. It feels good to type that.

But now, the tables have been reversed. Now I am the one being asked to look to the future and I don’t mind telling you that I’m finding it really unsettling. Really, really unsettling.

It has taken me a long time to adjust my sense of time. To reconfigure milestones as inchstones. To think about physical and cognitive goals not as something that should happen in the next 3 months, but hopefully, with the wind behind us, the next three years. I may still have a tendency to micro-manage the day-to-day (and always feel like I’ve not done enough), but the future is something that I have partly let go of. I have goals, hopes and dreams, but my horizon of expectation has shifted. It’s still there, but fuzzier along the edges and more distant.

This has been a herculean effort for me. So I find it very hard, as Boo approaches 2 (actual, not corrected) in April that consultants and others are asking me to plan ahead and make big decisions.

Statementing and schooling come up at many of our appointments now. And different pictures are being painted. Sometimes I hear of special schools, communication devices and a non-verbal future in which we have to wait to see the extent of cognitive disabilities emerge. From others, I hear he’s not disabled enough to go to the specialist schools that are very near us. That there is no concrete evidence of learning difficulties yet. That it’s not clear what would be the best environment for him.

Then there’s a pregnant pause…

‘What do you think, Mum?’ (Why no one can call me by my name is anyone’s guess.) And then: ‘What do you want for, Boo?’

Surely, what I want is irrelevant, I shout in my head. What he needs is what matters and, although I have strong feelings about various things (I know he understands everything we say to him, he does have some words and communicates with them, sounds, and in other, non-verbal ways), I don’t really know what he needs to maximise his potential, or more to the point, what institutions might be able to meet those needs.

It’s the same with Social Services. I am grateful that they are looking to offer us money to help contribute to the astronomical costs of making our house (the house we moved in before I was pregnant so that we could have a second child) accessible for Boo. But I can’t answer their questions. ‘So, do you think Boo will be able to walk up the stairs by the time he’s five?’ ‘Do you think he will be able  to bath and toilet himself by the age of 8?’

I want to scream at them, or failing that to say what I have hated hearing so many times before: ‘Sorry, my crystal ball is broken.’

Don’t get me wrong. I am glad people are consulting us. And some clearly take our assessment of Boo very seriously. That hasn’t always happened. It’s nice that it does.

But let’s face it, I’m no clinician and although I would argue till I’m blue in the face that I know him best (I do!), I am not a healthcare or SEN professional with enough local or sector knowledge to know what out there in home adaptations or schooling is best for him. And let’s be frank about this. Even if I did, not much of this is in my control. Geographical luck and, what it always boils down to, money, will play a big part in all this. We are the parents of a child with additional needs. We just have fewer choices than most.

I feel in the dark. Newly infantilised in only a slightly different way than the way I felt after his birth. It’s difficult to process. And it’s disorienting having made this mental leap to Boo let’s-just-see-how-things-pan-out time, to planning mode.

We have our first TAC (or Team Around the Child Meeting) in March. It has taken 10 months to set up and I hope it will help to clarify some of my thinking about all this, although I am really not sure what to expect of the meeting and would greatly appreciate any advice anyone has on how to get the most out of such meetings.

I know that the statementing process should start in the next few months. It is frightening. I know there are opportunities, but I can’t help but feel that we are walking in the dark. He is so young. So much could change. So much will.

How on earth can I navigate the path ahead when I can’t even see it beneath my feet?