Tag Archives: SEN

Writing a Statement: An Open Letter to our Local Authority

Dear Local Authority

Thank you for issuing Boo’s final statement the day before your deadline. Thank you for taking an entire month to accept all but one of the tracked changes in the statement I wrote for him, in which I pointed out evidence you’d missed and solicited more where you felt it was needed. It only took you a second to click on that Word button that said ‘accept all changes’ and now Boo has a statement that has a wonderfully detailed and accurate assessment of his needs and matched provision in parts 2 and 3.

Thank you for letting me do your job for you. Oh no, no, no: don’t thank me. It was an honour. Honestly. And taking two and a half days off work to do this so that you didn’t have to, which I then had to make up at evenings and weekends, was a doddle. No worries.

My pleasure.

But why oh why did you miss out the most important sentence of all? The one that accumulated the several pages of 1:1 provision now rightly stipulated in part 3. Why did you not quantify the hours of 1:1 he needs each week in total? Is it because  you know this means you are committed to nothing at all? Is it because it renders the rest of the statement entirely meaningless?

A friend texted me to ask if you are very stupid or very strategic. I don’t know. I honestly don’t know.

So now we have to go to court to get them to ask you the same question. Well done, LA.  You stay classy.

I think it’s a brilliant idea, actually. Every time I don’t do my job at work properly why don’t I insist that my colleagues or other stakeholders take me to court to prove it? And then I needn’t face up to not doing something I am meant to do for five months at a time. Terrific idea. I will propose it at the next policy and planning meeting I attend.

But in all seriousness, because I, for one, have not forgotten what a serious matter this really is, I wonder if you would act differently if you knew the true cost of all this. No: not those beans you are counting, Madam, save them for the panto at the local rep. No: I mean the very real, the very painful, psychic costs of your incompetence? Of your failing in your duty of care to a vulnerable child. You may know this already, of course, or know and not care. But I’ll feel better if I tell you about this. So here goes.

This is how you make us feel.

You address us with the mock courtesy of a 1930s schoolmistress talking to the parents of a badly behaved schoolboy on a parents evening. The social niceties are there, but you aren’t very good at hiding the fact that you are talking down to us, as if we are badly behaved or stupid. Oh and while I’m at it, do get my title right, please LA officials. My daughter is the only Miss in my family and at 7 years old she will likely only put up with the diminutive for another couple of years herself.

You seek to infantilise us, feigning knowledge and regaling facts that are simply untrue. Do you think we won’t have done our homework? Do you think you can get away with it? Or have you been relating these spurious facts for so long that you now genuinely believe they are true? Who knows…

But you know, I’m 38 and big and ugly and all that. I can take condescension. I know what to do with it. Right back at ya!

So why do I finish each and every exchange with you wanting to sob my heart out? Why do I get off the phone shaking? Your incompetence? Your only partial truth telling?

No: it’s because you treat my boy, all our children, like a really nasty little problem. A deep inconvenience. A drain on resources. A  scrounger. Never mind that this little problem and all the other little problems like him mean you have a job. You treat each of our attempts at contact with you (and there have only been 4 in 7 months) as a minor outrage. How dare we try to speak to you. How dare we remind you that we are human.

And you have the audacity to sign off every email to us with a mission statement declaring the LA’s vision of creating ‘opportunities’ for young disabled people to ‘contribute and achieve more than they thought possible’. (Yes: you know which Local Authority you are, don’t you …?) Forgive me, but these words – because they are just words – stick in my throat.

Everything Boo has achieved to date has been in spite of you and we will continue to support him while you just put more and more impediments in the way. Frankly, you don’t know the meaning of the word vision or at least you’ve forgotten it as it’s gotten buried under a pile of budget sheets.

And you know, I get the financial stuff. I do. But you can’t even be honest about why you are failing our children. You don’t say: we can’t afford it. You say: we can’t do this because this form isn’t filled in to our satisfaction, or the OT didn’t use the right kind of headed note paper, or because he’s 2, or because you should give up work and live (euphemism alert) on carer’s allowance.

Local Authority, you leave us bereft, angry, embattled and sad. But worst of all, every day you drag your heels our son loses out. Some vision, Local Authority. Some vision.

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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?

A Day In the Night Garden

ITNG

 

Sissyboo at the same age Boo is now had quite an extensive viewing repertoire. She was a big fan of the usual suspects: Show Me, Show Me, Peppa Pig, Thomas and His Friends, Ben and Holly. She had also started to like films. Her favourite was, and still is, The Wizard of Oz. I don’t want to give the impression she watched the gogglebox all day, but Sissyboo, despite my best efforts, dropped her afternoon nap at 19 months even though she needed ‘quiet time’ (as I did) to regroup. And that was how we spent some quite time. Watching a Show Me, Show Me and colouring or watching a film.

Boo, as in all things, is different. He doesn’t believe in quiet time. He’s either on the go like the Duracell bunny or completely conked out. He still very much needs his nap. And until a few months ago he looked at the TV as if it were the most pointless invention ever.

Now, this is no bad problem to have, of course. But it had me a bit worried. Sissyboo likes TV and film because she likes narrative. She loves good stories well told. And she has always had a fantastic attention span. She can read for ages or colour or make things for hours, just as she will watch all three hours plus of a Harry Potter film without a peep.

So did Boo’s lack of interest in the TV mean he couldn’t concentrate in the same way. Or were his vision problems more complex than we thought? I decided not to worry about it. There’s too much important stuff to worry about.

And then one day I had a panic. I hadn’t done my therapy homework. I had said to Boo’s Speech and Language therapist that I would try to learn some Makaton. I was sceptical about it (Boo can barely use his hands, so signing for him seems unlikely and my sense of his understanding was that he didn’t need gestures to comprehend what we were saying to him). But I do my homework ,so I made the promise and then realised I had done nothing about it.

Then bingo! Justin would teach me, I thought in a eureka moment. I put on Something Special  in the background while doing some stretches with Boo. And guess what? I learned the Makaton for lemur (which I’m sure I will need one day). And he was transfixed. He loved it. Still does. And we all love seeing a programme where kids like Boo are the norm rather than utterly invisible.

Shortly afterwards he added another programme to his list of viewing pleasures. It had been one of Sissyboo’s once upon a time, too: In the Night Garden. The words Iggle Piggle and Upsy Daisy bring instant smiles to his face and determined looks at the TV, as if he could turn it on and start an episode playing by sheer force of will.

And so, buoyed by his new found love of Derek Jacobi’s voice, I decided to take a plunge. He’d only just started watching short TV programmes, but I figured he was ready. I booked tickets to see In the Night Garden Live! at the Richmond snow dome. A performance coincided with an inset day for Sissyboo. The three of us would journey to the Night Garden together. And what an adventure it would be.

Sissyboo has loved the theatre from the age of 2. One of my favourite stories is of her telling me and her dad emphatically not to clap at the end of the first show she ever saw, The Gruffalo, because that would mean it would end and she wanted it to go on forever. This time, she was the grown up, telling her little brother how to behave in the theatre.

Except of course, behaviour was the least of our concerns. As the parent of a disabled child, logistics were one of my top worries. You can book premium tickets with wheelchair access online, but nerves got the better of me when I tried to do this, so I phoned the ticket line to make sure that they would have a wheelchair space for Boo (who would need to sit in his adapted buggy throughout) and two for his sister and me next to him. They did and the booking went very smoothly. We also booed to meet Iggle Piggle himself afterwards, where I hoped the sight of a 6 foot blue cuddly thing with a coxcomb would seem less scary than it sounded.

We got to the snow dome in good time and when they saw Boo’s buggy we were ushered into the premium seating queue where an usher said she would take us to our seats in a few minutes. I wish I could show you a picture of Boo’s face as he travelled round the edge of the snow dome to the sounds of the Pinky Ponk and the Pontipines and the reassuring snippets from Derek Jacobi. He looked happy, if a little confused. We got him positioned and Sissyboo sat next to him. He was right at the front, off to the side and had a great view as you can see from my photo (yep: I’m no David Bailey).

Everyone else piled in as Derek Jacobi gently told Upsy Daisy and Makka Pakka to get a move on as the show was about to start. Boo was still happy. But still confused. Why were we sitting inside a bouncy castle that didn’t bounce?

And then the Ninky Nonk came out and all became clear. I would tell you what happened in the show (as a seasoned In the Night Garden viewer I can tell you it probably involved losing things, finding things, cuddles, funny noises and lots of falling over). But I can’t tell you exactly. All I could watch was Boo’s face.

From the beginning to end he squealed ‘yeah’ and ‘more’. He loved it. He just loved it, watching in wrapt attention as all his Night Garden friends came to sing, dance and squeak for him.

And then we met Iggle Piggle. I don’t know how, but Iggle Piggle managed to get on his knees to be on a level with Boo and Boo stroked him and smiled the biggest smile you have ever seen. They had a cuddle and a photo with his big sister which I am looking at right now.

Going to a first show with a child is always special. But going to a show with a child like Boo is extra special in so many ways. This is not the sort of event we can just phone up to get tickets and go. It takes enormous planning. Is there appropriate seating? Are there adequate changing facilities and parking? I’m so pleased that In the Night Garden Live took all those headaches away from me. All we had to do was make a call to book tickets, tip up and enjoy a truly inclusive event.

And we did. We really, really did.

 

The One Where a Swimming Lesson had me in (happy) Tears

This one is a happy post, I promise. Thank you for sticking with me through the last few difficult posts. I am really struggling at the moment. I am hopeful things will get better but trying to work out alternative plans if they don’t.

When people ask me how I am these days, my answers are full of water metaphors. You see sinking or drowning are just about the best words I can think of to describe how things feel at the minute. But (I know: I promised this would be a happy post and it is!) Boo isn’t. I’m pleased to say that he is swimming away against the tide and keeping his head proudly above the water.

If you read this blog regularly, you’ll know I take Boo to weekly swimming lessons. There is no hydrotherapy here and swimming is so good for Boo’s movement. And he can do things in the water (like roll) that he can’t do on land. He has just completed level 6 of a series of private swimming lessons in a lovely, local, hydro pool. It’s a mainstream class. I wasn’t trying to make a statement in putting him in a mainstream class, I should say, but there are woefully few SEN swimming classes anywhere local for children under 5.

Of course, I know his days in a mainstream class are numbered. Already, we have to adapt a huge number of the skills being taught to the class for him. This level, for example, has seen the kids moving in their class warm up from sitting and rolling in from the side of the pool (which Boo could manage with me holding him under one arm pit) to standing (yep: can’t do that) and jumping (yep: can’t do that either) in from the side. But I take him to the shallow end, hold him as I would in supported standing at home. Try to get him not to stand on tiptoes and shout ready, steady, go and wait for any sign of pushing in his legs to jump him in myself.

His teacher is SO supportive and lovely. She always offers help when needed and never thinks twice about asking Boo, just like all the other kids in the class, to demonstrate new skills. She doesn’t want him to be left out. She treats him just like everyone else.

And the result of all this is that Boo LOVES swimming (especially underwater). All the other kids (as Sissyboo used to) spend at least some of every class in a sulk, complaining about water in the their eyes or running around the pool edge in protest because they don’t want to be told what to do. Boo, who has lived with a drillmaster of a Mummy for 2 years, thinks sulking is for wusses and screams and laughs and yells ‘more’ from the minute the class starts until it ends. Boo is one of the happiest children I have ever met and he is never happier than in the water.

We are about to move up to the next level after a short class break. In an ideal world, he would repeat level 6, but there’s no space in that class next term and the school can’t accommodate the request. I remember level 7 well when I did it with Sissyboo (who has now completed all 24 class levels and is a veritable 750m swimming fish). I remember it because it was the level where in play time at the end, the kids climbed up onto the raft they’d only sat on in previous levels, before being asked to run along it and jump off the edge to mummy or daddy. What I had forgotten was you first try out this new skill in the last class of level 6.

When his teacher explained what we’d be doing this last Saturday I just said. ‘OK: this’ll be interesting’. She said, ‘It’ll be fine. We’ll hold him.’ A million thoughts flashed through my mind. What if he slipped? What if the other kids stared at him? What if this was the moment they realised he was different? Would the parents pity him? Or me? We don’t want pity…

The thoughts stopped as Boo was put on the raft. His teacher held him up. I grabbed his one arm and a dad on the other side of the raft (without being asked) grabbed the other and Boo stepped in the scissory, tip-toey way he does in bare feet with the most massive smile on his face. Every one cheered him and called out his name and told him how clever he was.

The tears welled up in my yes. He was doing it. In his own way, of course. But he was only bloody doing it.

And people didn’t feel sorry for him or me. Rather the kids and their parents were supporting him (and me) both literally and figuratively. They wanted him to do this as much as I did, I realised. And when he did and they clapped and cheered, I could see through misty eyes that they were proud of him too.

It was an incredible moment and I’m not sure I can do it justice in the retelling. But in those few precious seconds I felt like we were all there holding Boo up and letting him show us his best. And it was such a joy to see. I want his whole life to be like this. He has so many amazing things to show us. I just know it.

 a4641-smallsteps

 

Small acts, big heart

I’ve written a lot on the blog about what having a child born early or with additional needs (or both in the case of Boo) does to your sense of perspective. To say it changes your view of life is the understatement of the decade.

Choose your metaphor… Having a child with development delay pulls the rug from under your feet. It shakes the foundation of how you think the world works. It shifts the goal posts (forgive me: it is World Cup season…).

With Boo, the tiniest things always get celebrated. The smallest things. Whether it’s the formulation of that elusive ‘g’ sound, or getting him to swallow when I ask him to, these things are like winning the lottery. Every task is so hard won for him. Each goal achieved is completely amazing. And I celebrate many of these goals in life and on the blog, encouraged by Jane’s at Ethan’s Escapade’s lovely linky, Small Steps Amazing Achievements.

Things have come so much easier for Boo’s big sister, Sissyboo, of course. And since Boo’s arrival, I worry I might have sometimes been guilty of overlooking how tough things can be for her. Her many achievements are rarely as hardly won as her little brother’s, but they are just as amazing. I know that even if it it’s not always evident on the blog.

Take this week, for example, when my strip of wind six-year-old had to do a distance attempt in one of her swimming lessons. Sissyboo has been going to swimming classes, with a few breaks, since she was a baby. The intention was never to turn her into Rebecca Adlington (much as Ms Adlington is one very cool lady). No: it was just to make Sissyboo safe in the water, because I wasn’t at her age. (Inheriting my Mum’s phobia of water, I learned to swim at the embarrassing age of 18. Don’t tell anyone I told you, OK?)

Mission accomplished. Sissyboo loves being in the water, but the lessons, that The Grumposaur has taken her to since I was 20 weeks pregnant with Boo, have become a major bone of contention. She doesn’t listen to her teacher, messes about and generally behaves like a six-year-old. Her technique is not great, I’m told (what would I know Mrs Swims-breast-stroke-with-her-specs-on?) because she doesn’t care or listen to her teacher. To be honest, I don’t care much either, as long as she’s safe. But the lessons are expensive and it’s not clear that Sissyboo is getting much out of them any more. So we won’t be renewing her lesson subscription next term. I am going to take her myself for fun swims on a Sunday.

So last Saturday was the last chance that she has to do a distance swim with her swim school. The Grumposaur wasn’t optimistic. Sissyboo wanted to get a badge. But at her last distance swim she swum an astonishing 500 metres. The chances of her beating that to achieve the next badge up (600m) when we couldn’t get her to sit still enough to eat a decent lunch or drink some water at lunch time were slim. So Boo and I went along for moral support (even though Boo sweltered and generally had a rotten time, while carrying him as I walked up and down along the poolside crippled me).

Within minutes of her getting into the pool, even a rubbish swimmer like me could see that Sissyboo was making life hard for herself by being all enthusiastic in the water, unlike some of her dophin-like classmates. She wasn’t going to do it. I could see that.

As she reached the end of a tired 450 metres, I told her how proud Boo and I were of her. I told her how she was a much better swimmer than Mummy she was and that she didn’t need to carry on. She asked how many lengths she needed to do to get a badge. The next badge was set at 600 meters. 6 more, I said. That’s too many, I added. Takes some bre… Before I had the time to tell her to take some breathes, she was halfway back down the pool with The Grumposaur chasing after her. She wouldn’t stop.

We often call Boo the Duracel bunny for his tenacity in therapy and determination to complete any task, whether it’s a filling in a form board or feeding himself. If he the Duracel bunny, then his sister is surely the original.

The next thing I knew, she had swum 600 metres. I asked her to stop. She wouldn’t. At 700 metres (700 metres!!!) I told her that she wouldn’t be allowed to stay up late that night and help me make dinner if she didn’t stop. She would have carried on. I was worried she was pushing too hard. The bribery worked. She reluctantly got out of the pool.

How amazing. A big step. A big achievement. And I am so proud of her.

But you know, I’m also proud of so many other things that Sissyboo has done in the past few days. Lots of things. Small things.

Like the way she spent her pocket money on a Mr Tumble comic for her brother. Like the way she made him a pirate hat and wrote a book about Boo the pirate and his pirate princess sister. Like the way she made him a retrospective sticker chart for not waking Mummy up in the night.

In many ways, these things make me even prouder than her massive achievement in the pool. Because these small acts show what a big heart my little girl has.

Her achievements, like any of the achievements that really matter, can’t so easily be quantified or measured in lengths or rewarded with badges. Her achievement, quite simply, is being her.

a4641-smallsteps

Accepting that Others Don’t

The A-word is a big one in the premmie and special needs worlds. Almost the minute after your baby is born early or when health or developmental difficulties first become apparent in your child, healthcare professionals and a host of well-meaning folks start telling you that you are on the road to acceptance and that it will take you a while to get to your destination. But you will get there, they tell you. You may find yourself in Holland at the end of the journey, but who wants to go to Italy anyway. (I, for one, am quite fond of sun and pasta, for the record.)

When I think back over the past year and a bit of blogging, I realise that I have blogged much less about acceptance than I might have imagined I would. It’s true that one of my favourite posts on the blog (because it’s about one of my favourite people) is about Sissyboo’s instinctive acceptance of her little brother. But I have written about acceptance much less in relation to me.

There are two reasons for this. It’s partly that, quite frankly, I don’t like the word all that much. As I’ve said before, accommodation seems a much more accurate way of describing my response to Boo’s challenges. But it’s also simply the fact that since he was three days old, I just knew life would never be straightforward for Boo. Once he had contracted that bloody infection in his incubator, and once we heard that he had sustained a massive brain bleed, I knew what that likely meant. I wanted things to be different, of course. I wished, begged and prayed that I was wrong. But I knew. I’d accepted the difficulties that lay ahead long before we got a diagnosis of cerebral palsy or before I even knew precisely what those difficulties  would look or feel like.

I haven’t written much about acceptance on the blog,I now realise, because I have pretty much always accepted things. Or at least, I accommodated myself to them a long, long time ago.

I feel lucky that acceptance has been relatively easy for me. That’s not to say that I’m not regularly twisted into knots or prone to depression, anxiety or the odd waterfall of tears with worry about Boo. But I have seen the pain and anger that others have felt trying to take on board how things are and are likely to be for him. And I am glad that I have never had to feel that and that such emotions have never got in the way of my unbounded love for him.

But lately I have come to realise that I do feel pain and anger (irrational and unkind pain and anger, I think) when confronted with others’ lack of acceptance of my son. I’m not proud of it, but it’s true.

This is the sort of thing I mean.

Scene 1

Me [talking to parent in the school playground]: Yes, Boo’s doing well. Thanks for asking. [An awkward pause while I try to think of something to say that is a positive in our lives and that they won’t greet with that look of pity I find so hard to takeBingo!] He was given a walker to try out by his physio last week.

Parent: [with palpable relief that I am not going to talk about things that make them uncomfortable like the fact he still can’s sit independently]: Oh that’s wonderful. He’ll be running before you know it. You will be sending him here to school won’t you? He’ll be captain of the sports team one day, I’m sure.

Scene 2

Me [making idle chit-chat while waiting for our mainstream swim class to start while Boo is eating my hair and trying to break my back by going into full extension in excitement]: Boo’s moving up to the nursery room next week so he’ll be with J. We’re really pleased he’ll have a friend there.

J’s Dad: Great. It’s good they’re finally moving him up to be with his peers. He’ll catch up with the rest of them in no time, I’m sure.

These are both real-life conversations I have had in the past two weeks. I could have picked around a dozen more in the same period. All were had with well-meaning and thoroughly nice people. But they left me sad. More than sad. Angry. Not with these people, you understand. That would be wrong. But just with the situation. With the failure of others to come to terms with things as they are.

I don’t know if Boo will go to mainstream school. It’s possible. But his physical needs are severe and he would need considerable 1:1 input. It is unlikely he will go to his sister’s school. Even if he did, he will never be the captain of the sports team. I don’t know if he will ever walk unaided, but the best guess of everyone involved, is that even if he can walk short distances with a frame, he will use a wheelchair much of the time. He will likely never run.

And he will never just catch up because he’s not behind. He is exactly where he should be – no: he’s miles ahead of where the MRI scans suggest he should be – given the extent of his brain damage. Of course, being with his peers in nursery is a great thing. I couldn’t be happier that this has happened and that the transition has gone well. But Boo will never be exactly like his peers. And why the heck should he be? He’s just perfect the way he is.

Oddly, I find the eternal optimism of people we don’t know very well to be much more difficult than some of the doom and gloom predictions of medical folks we see regularly. It’s much easier to prove people wrong (and Boo and I take great pleasure in doing this on a regular basis) than to disprove that others could ever be right. And on the odd occasion where I have corrected people and pointed out that it’s unlikely Boo will outrun Mo Farah one day, but that that’s fine and we don’t care, I have been made to feel like I am a pessimist, have an unhelpful attitude or that I have done something wrong in not doing my best to make other people feel better by painting a false picture of my son’s life and future.

I am aware in writing this that you might think me mean spirited. I hope you see that I don’t blame people for saying these things, but I do find them difficult to take. You see, they are a constant reminder to me that we can accept Boo completely, but they – society at large – will always be judging him according to a yardstick he can never live up to.

So I guess I do still have quite a bit of emotional work to do. Accepting that other people find it hard to accept Boo is going to be one of my trickiest challenges. But I have to work on it. Because my little boy is going to have to do this later in life, and his sister is already having to do it now. And I want to be ready to help them. Because we are in this together.

Guest Post: How Can I Make Working Work?

This post is not by me. It’s by someone who wants to remain anonymous. But the story she tells is very real and a powerful reminder of how very quickly and irrevocably lives can be changed by disability entering their lives.

I write this post with some reluctance due to the enormity of the decisions we made in 2012 but I stand by each and every one. I also want people to know how easily situations can change. You can be a working mother one year, and rely on “benefits” to top up earnings the next. You can ” have it all” –  house, 2 cars, holidays, good jobs, career and can lose everything very quickly. 

I loved my job as a science teacher. The kids were brilliant. However over my almost 10 years of teaching I saw the profession become increasingly less fun with more marking and more reinventing of the wheel. Preparation, marking, feedback, observations – all began to take over my life especially as our school went into special measures.

Yes we have 13 weeks “holiday” but this is usually spent on marking coursework and books (or pretending that the huge piles of it aren’t still in the car later into the holiday and having to do a 3 or more day intensive marking session to catch up). Contrary to popular belief you don’t whizz out the door at 3.10pm you have meetings, phonecalls, preparation and marking. You can either take it home or do it there, but it still needs to be done. 

I went back to work full time after my first child. Childcare was split between my my mother, my MIL and my husband who had flexible working. When my second child was born I had planned on taking a full year off and then reducing my hrs to 4 days a week and thus not needing to lose any of my responsibilities ( TLRs) that I had built up at work. However all of a sudden I became the mother of a severely disabled child. He wasn’t content with with just being profoundly disabled, he had many health problems too,  and would become very ill very quickly ( think resuss and you have a fair idea). Added to the mix was a probable limited life expectancy and him being classed as life threatened. I had to go back to work anyway for a set amount of time or pay back all of my maternity pay. I negotiated a further reduction of hrs to 2 days per week, gave up my extra responsibilities and attempted a return to work. We struggled financially with me working this way but those few days were difficult enough.

I left my son with 2 terrified grandparents each day I went to work. They struggled with his care and his equipment. There was a mention of 2 year funding to help with a nursery place but no guarantee of 1 to 1, and we didn’t fall into the “right” post code anyway. Even so, what mainstream nursery could have coped with my son’s needs? So those 2 days a week I sat at work panicking about what was happening at home and still had all the prep and marking that came with the classes I taught. I tried to stick appointments in for the back end of the week but those 3 days turned into a chaotic mess.

After a few months I began a spiral into depression and was signed off work sick, and then eventually handed in my notice. We were in and out of hospital with my son, had appointments galore, and had 2 grandparents too scared to look after him and no alternative childcare, what else could I do? 

We had a mortgage on a house we had already been told was unadaptable for our son’s needs and had had it on the market a while with no success. 2011-2012 was not the best time to be trying to sell a house and in addition all those debts you have and pay quite easily on 2 wages were starting to mount up. We asked the mortgage company for help- to just pay the interest on the mortgage until we sold, but they refused. 

As the bells saw in the new year of 2012 we made a huge decision. We needed a fresh start. Our son’s issues weren’t going away anytime soon and we couldn’t manage financially on my husband’s salary. We declared bankruptcy in the February and even had to borrow money from friends to pay for the bankruptcy (it wasn’t cheap at over £700). However what the courts don’t do is automatically take your house (although they did take my car). They bend over backwards to help you keep it. But it was no use to us and even without the debts the bankruptcy cleared we still couldn’t pay our hefty mortgage. After about 6 months of non payment the bank took the house. In that time we had already (just) been housed by the LA in a large house that could be adapted for our son. Getting rehoused was an awful process of begging and pleading. Quite frankly I have never felt so low as I did during this period of time. 

So now we are 2 years on and my son has started school! He has a full time placement at an amazing special school expert at dealing with complex needs. However he’s rarely there all day as we have so many appointments. I had hoped to consider returning to work once he started, but with 2 or 3 appointments per week who would have me? I considered supply teaching, although it would pee me off in a way to be “at the bottom” but more importantly who would care for my son before and after work? I can’t change career as we have no one to look after our children in school holidays.

What do I do? 

 
How can I make working work?