The Secret Life of a SEN Parent

At home, I am happy. Sure, sometimes I am frustrated. OK, often I am frustrated. Sometimes I am sad. But mostly, with my kids, I am happy. Happy with them. Happy for them. Happy because of them.

But when I am out and about … well, sometimes I am not happy. Often I am unhappy.

Unhappy because people stare. (Why are you feeding that child a drink on a spoon?) Unhappy because people judge. (You child is still in nappies?) Unhappy because they jump to conclusions and feel like sharing these sometimes. (Look at that selfish mother parking in a blue badge space. I bet she borrowed that off her nan because she can’t be bothered to walk 100 yards to get to the supermarket entrance. Seriously. That has been said to me.)

But mostly, as I realised this morning as I waited in line to go to an assembly in which Sissyboo was reciting poetry (proud parent alert!), I am unhappy because I just don’t belong. Other parents at the school know about Boo. I know they know. I know they talk about him. I know many feel sorry for us. (Please don’t, by the way…). But they won’t talk to us about him. He is the nearly-three-year-old cute, bespectacled elephant in the room of every playground chat I have. That’s assuming they ever do talk to me, of course. Usually they don’t.

Parent of disabled child + working mother = social pariah.

But you know, I am big and ugly and all that and can take it. I may feel guilty about almost every aspect of my life but I am settled upon any choices that I am still able to make about it. I am doing my best. For all of us. What more can people ask of me?

No: what I find hardest about all this is just not fitting in. Anywhere.

I’m sorry but I just can’t listen to the terrible tragedies people talk about in their day-to-day lives and force myself to care that much. That their bins haven’t been emptied this week. That their child prodigy has not yet been recognised by their child’s teacher to be the free reader they know they should have been acknowledged to be months ago. That Jeremy Clarkson has been sacked from Top Gear.

Some people wouldn’t know a tragedy if it walked down the street and poked them right in the eye.

I feel mean saying this. I don’t like myself much for thinking it and worry you won’t like me much too. But it’s true. And I realise that what I resent is not so much that my life isn’t such that I can have the luxury to worry about these things, but that I just don’t belong anywhere.

Look, I am lucky. I have a huge number of fabulous friends. A select few and anyone who reads this blog (I am grateful to you all!) know many of the ins and outs of our life. Our triumphs and struggles. The joy and the gut-wrenching pain. But most don’t.

Being the parent of any child is tiring. Being the parent of a disabled child sees you ride a tsunami of exhaustion on an almost daily basis. But what I realised today, stood there doing work emails on my phone because I knew no one wanted to talk to me, was that one of the most exhausting things in my life is rarely being able to be myself. To say the things I want to. Or not say them if I don’t want to. It is exhausting always having to protect other people’s feelings so as not to intrude on their lives.

I’m quite good at acting. It was a career path I nearly followed once upon a time. But when you don’t get paid for it, it’s a lot of effort for not much reward.

But at home I am happy. Happy with my kids. Happy for my kids. Happy because of my kids.

Back and forth

I am so pleased to have come back to the blog, although it feels weird. I don’t know why. It just does. And it may just get a bit weirder still as I won’t be blogging for at least another week as I have to travel with work for a few days. And that makes me feel weirder still.

Sissyboo is none too happy. I work long hours, but as flexibly as possible, which usually means I put the kids to bed every night as well as make tea, read stories and all the fun stuff at the end of the day and go back to work while they sleep. She doesn’t like it if don’t do these regular Mummy things. Neither do I.

But I am also desperate to get away. I feel awful saying it. But it’s true. For the last two weeks I have been fantasising about a few days where the distance between me and home and the time difference means that I can’t chase things, get mad with failing services or engage in the daily therapies. My back has been really bad lately and it wants a break, too. So does my overly cluttered brain. I will have to work hard when I go away, but seriously: it feels like a holiday. And boy, do I need a holiday!

Not today, though. Today, the reality has sunk in. I will miss the kids. Terribly. I know I will be OK when I get there because I know that they will be totally fine without me, but I will miss them.

Still, missing them doesn’t quite explain the tight knot in my stomach I am feeling right now.

I thought it was just the control freak in me messing up my gut. But I don’t think so. I have written notes so detailed they amount to a novella for The Grumposaur after all. It can’t be that.

No: I know what it is. It is a totally irrational fear that something might happen to me while I am away. One of my biggest fears for my kids is me not living long and strong enough to look after them. Especially Boo. I know it sounds morbid, but it doesn’t feel like that to me. It just feels like a very practical response to a problem so unimaginable that I can barely bring myself to think about it.

What if something happens to me? What will happen to them.

I know these fears will go. I know I will go and come back and be refreshed and life will go on as it is now with the briefest of interruptions.

But that is what this special needs life is like in a nutshell, I think. The parenting game is the same all mums and dads play. I am the same Mum I was when I just had Sissyboo. But the stakes are much, much higher now we have Boo. I was never a gambler, and the playing makes me very nervous. Still, we take the wins where we get them and the highs are like nothing I could have imagined before.

And if I were a betting person, then I’d bet it will all turn out fine. Wish us luck!

Learning to breathe

So, where was I? Oh yep: all at sea. Feeling pretty desperate and hopeless about the prospect of keeping my job and our home in the face of our Local Authority and their refusal to up Boo’s 1:1. Things got really bad. I had my resignation letter drafted in my head. I was thinking about a big move. I was stealing myself to try to explain to Sissyboo that we would have to leave our home, her school and our friends, and trying to persuade myself that we could move to a different area and start again at the bottom of all those service waiting lists. Who needs work, right? Who needs money?

But miraculously things turned around.

Well, I say miraculously… My child has cerebral palsy. I don’t believe in miracles.

But I do believe that hard work and determination can make anything possible. The hard work of doctors and nurses to save him. The slog of therapy that has enabled to sit for very small chunks of time and has brought him some speech when I was told that neither of these things would happen for Boo.

Taking inspiration, as we always do, from him, I wrote letters. We took legal advice. We contacted our MP. We went as high up every relevant food chain as we could until someone in the hopes that someone would throw us a lifeline. I kept phoning people, writing emails. Making our voices heard. It was exhausting. Someone offered to help. We’re still not out of the water. The solution has not yet been realised. But we can see the rescue helicopters overhead and the shore in the distance. Things should be OK. I cannot tell you how good it feels to write that.

So we celebrated, drinking a bottle of pricey fizz despite the stress headaches we’d been sporting for nearly 10 months. We walked around in a daze for at least 48 hours, not quite believing things seemed to be turning around. It was an amazing feeling.

And then it stopped. Nothing happened. Nothing bad, I mean. But I felt this panic rise up from belly one morning and it hasn’t gone since. It’s been over a month now. And it’s still there.

It’s not depression. I know that old foe well enough. No: I think it’s a side effect of long months of self-preservation.

A tidal wave of worry hit me that day. Worry about Boo’s hips; worry about schooling; worry about my failing back and the pain I am in (and what this means for my ability to look after Boo); worry about Sissyboo’s behaviour at school; worry about potty training; worry that the lifeline will get pulled back out of our reach just before we have time to grab it.

All of these fears (and many others beside) are real. None is irrational. All need worrying about because all need action (some urgently). Coming to this overwhelming realisation just days after feeling like I might just have had the winning lottery ticket felt cruel. But it’s hardly surprising.

I felt as if I was being suffocated when I let my mind wander onto these things. Suffocated and paralysed. Why was I being like this? Couldn’t I just take good things any more?

No: of course I could. (See fizz reference.) But what I came to realise was that in order to get to the point where we had something good, finally, to celebrate, I had forced myself for months to overlook so much. In order not to break, I had let myself off the hook of fretting over some things. I had unwittingly prioritised our worries into one gigantic list and only acted on the most pressing. I would have snapped if I hadn’t done so, I think.

I guess this was my version of a behaviour many have recommended to me since having Boo: putting on my oxygen mask before other people’s. Yep: that’s what I was doing.

But you know what I came to realise? In doing that I had forgotten how to breathe on my own. So when the oxygen mask was eventually taken away with the problem it had helped me through I was left gasping for air.

To be honest, I still am.

Don’t get me wrong. The frustrations and worries aside, we have lots of fun every day. We laugh, giggle and marvel all the time. But when I wake, go to sleep or have a rare minute or two to myself, I am working my way down the worry list I had repressed for so long and trying to remind myself how to breathe again.

I haven’t been very successful so far. I hope my return to blogging might help. I hadn’t meant to stop for so long. It just happened.

I hope you’re all still there.

Perspective

Things have gotten on top of me lately. Things have been pretty relentless. We still haven’t heard a dickie bird from the LA in response to our MPs letter which supports our request for them to reconsider their funding cap on support for Boo in nursery. Neither have we heard from his nursery whether they will accept our proposal to let us pay for the 1:1 support he needs so that I can keep my job and we can keep our home. The wait is excruciating.

And on top of that, Boo got ill last week. A virus. A nasty one, but just a virus. His sleep (usually bad) has been appalling. His temper (usually buoyant) has been awful. My back – not great at the moment – is extremely painful, while Boo’s ability to do things (always challenged but determined) became practically non-existent as his tone in his trunk decreased even further making his torso do its best beanbag impression. It has been so hard to see his frustration. So many of the memories and fears of the NICU flood back. It’s hard to remember even though we never really forgot in the first place.

People are kind. They keep asking me how I am doing. For those who know me best this is a kind of code: Are you getting depressed? Do you need to see your GP? Most, however, mean well but for them ‘how are you doing’ really means: ‘I know things are tough and I’m sorry but let’s make small talk so I don’t have to feel uncomfortable hearing how crappy your life is’.

Both groups get the same answer: ‘things are hard – so much is on the line at the moment – but we’re doing fine’. That’s true. That doesn’t mean I am not finding things really difficult at times. But it’s true.

And I have to keep pulling my socks up and not letting the green eyed monster come and make things worse by feeding off life’s petty envies. Like when people I don’t know on a local parents forum I am a member of on Facebook seek advice for the latest ‘crisis point’ in their lives: an otherwise healthy child teething for the first time; a two-year-old who has slept through for 21 months suddenly waking once a night.

Part of me screams inside ‘you don’t know you’re born’. Then I start to like myself a little less. I remember the pre-Boo me, Sissyboo’s Mum. A new parent who also got stressed about teething and felt aggrieved over the kinds of disrupted nights I would dream of if only Boo would sleep long enough for me to. Everyone has their problems. And things that no longer make the radar in our home any more feel bad to others. I get that. I am not such a different person that I can’t remember that any more.

And I also know something else: we are lucky. Unbelievably lucky.

Lucky, that I gave birth out of area right near a level 3 NICU that was the best place for Boo to be born. That he survived probable meningitis, even if its legacy is cerebral palsy. We were unbelievably lucky that  he developed infantile spasms out of area, near where my folks live, and where there is one of the best children’s hospitals in the world where some of the country’s leading experts on a rare form of epilepsy are based. They stopped these catastrophic seizures quickly. What would have happened if they hadn’t doesn’t bear thinking about.

We are lucky that he lived. That he came home. I know this.

That’s why I say ‘so much is on the line at the moment’ rather than everything. Because awful as things will be for me and for us if our lives are turned upside down (again) by the latest episode in our prematurity and special needs journey, we have Boo and each other.

Over the weekend I learned that a little boy we know only a little through Boo’s regular therapy suddenly and totally unexpectedly died. The sadness and fear overwhelmed me in an instant. I hugged Boo and his sister a little more often and a little tighter as I was so viscerally affected by this tragedy for a loving and strong family who have fought for years for the best life for their brave little boy.

Plenty of people have life easier than we do. I don’t feel bad about saying that any more. But plenty of people experience unimaginable loss and heartbreak of a kind I selfishly hope never to experience. However hard life is because of the challenges involved in Boo’s care I would deal with them 20 times over to know he is in our lives.

Known unknowns

When people tell me they don’t know how I cope with the challenges of our life I always take the trouble to point out to them that Boo is not the challenge. Neither cerebral palsy nor prematurity is even the problem. It’s all that came with his early birth and life-long disabilities. The people. The processes.

The uncertainties over his future are probably hardest of all to deal with, but you learn to live with that. I never thought I’d say that, but you do. I have. I think it’s because I can see the progress he’s making. He is on his own developmental curve, but he is developing into a lovely, bright little boy.

No: it’s the other uncertainties that come with Boo’s disabilities that are the unbearable ones. Your reliance upon individuals, services, administrations and bureaucracies that frequently fail or demonstrate levels of incompetence that are not just astonishing because frequent and because no one ever gets taken to task for them as they would in any right-thinking organisation, but because the consequences of people not getting this right can be profoundly damaging to Boo’s body and state of health. They don’t do my mental health much good either, let me tell you.

Some individuals we have been forced to rely on for advice and support have had appalling bedside manners (‘we don’t use the term vegetable any more, but…’) or made terrible mistakes, one leading to his hospitalisation. Others, happily the majority, have been caring and competent, even brilliant, but they have constantly been let down by the systems they are forced to use. Currently Boo’s physio (the very best of the healthcare professionals involved in his life) is pursuing a failure in duty of care notice about one service’s treatment of Boo at her own instigation, not because we asked her to. The fact that such action is commonplace and affects so many of the families we know makes me want to weep.

Until now the only things that have held us together through the catalogue of problems over getting ‘essential’ equipment and services for Boo (for which we, like so many other families, have had sometimes to wait well over a year) are our waning sense of humour, our determination to fight back and the fact that our home life and routine are fairly stable.

And now even those things are in jeopardy. Our LA is illegally sticking to its guns about the level of support it will give Boo in nursery (15 hours a week because of his age and not enough to cover his time there so I can work) and the onus rests with us to prove in court that they are wrong in taking this position without attending to his level of need and how long it actually takes him to access 15 hours of education, not for them to have to prove that they are right.

This will cost us money. Even if I can psych myself up to defend our case in court to save costs (and I am so beleaguered at the moment, I just don’t think I can) we will need to get a series of expensive private reports drawn up, even though all of those already provided by NHS and LA employees say what Boo needs them to to prove our case. If we got a solicitor, a much better option, we are looking at many thousands of pounds.

Given that we may end up in a Tribunal again about schools in 2 years time, we can’t afford this. More to the point, I would rather the money that we spend supporting Boo gets spent directly on him, not on people who make a living out of the fact that he is disabled.

And so, I can see things very clearly now. When people talk about the challenges in our lives I will be more emphatic. The big challenge in our life is not CP, administrative incompetence, systemic failure, or the illegality or ignorance of the Local Authority. No: It is money.

No one cares about Boo or about us. All anyone cares about is their budget.

So if it’s money people want, they can have it. I am currently begging (I am not proud of it, but I am – it is humiliating) Boo’s nursery to take more money off us (money we can only just afford) to buy him the 1:1 the LA won’t without a fight so I can continue to work. So we can have stability in our life. So Boo can access an educational and social environment that is aiding his development hugely. So that we can keep our home. So we don’t have to pay the council back for adaptations to be made to our home in the next few weeks if we are forced to move out of area into a home that we can afford on one income.

To be fair, the nursery is looking into this possibility. They are looking into seeing if they can help us meet the costs too. But the nursery is part of a national, expensive, private chain. (Your childcare options contract significantly when your child is disabled.) The nursery manager has asked their bosses to arbitrate on this matter. That was nearly 2 months ago. They still haven’t made up their mind. We are totally in their hands. I have no control over their decision at all.

So, in 3 months my life might be very much like it is now. Or it might be very different. I may have handed in my resignation and our home might be on the market. We might be trying to find an elusive accessible property Boo can live in and we can afford on a single salary that is near a decent school for Boo’s sister who will be forced to leave her friends. We might be facing up to having to set up again with a new bunch of healthcare and education professionals for Boo in a new area. Every time I think about it, I feel dreadfully sick.

These known unknowns utterly terrify me. I can’t sleep well and am developing migraines, which I have never suffered from before. I feel so shaken by not knowing what our lives will look like in 3 months time. Whether all the stuff that keeps us together (our home, our friends, our routine) will be taken away from us.

It is devastating. And no one who can do anything about it cares. Not one little bit.

Three little words

It’s been ever such a long time since I have linked up to the fabulous Small Steps Amazing Achievements or the life-enhancing weekend link up over at Love that Max. But that’s not for want of inchstones, here. There have been plenty.

No: the problem has been me. I won’t lie to you. I am really struggling at the moment. Really struggling. Hence the blog radio silence. The weight of appointments and admin and the huge hurdles in front of us at the moment around education, work and the many milestones that it seems ever less likely Boo will ever meet feels totally overwhelming. I try to be positive. And in the day-to-day when I am with Boo and playing with him I don’t feel so bad. Because I just enjoy him and being with him.

But in quiet moments (the only moments I can steal to blog in) I feel totally at sea and worried I am drowning. I don’t know how to swim to shore any more. It is horribly disconcerting.

It’s hard to summon up the wherewithal to write about Boo’s achievements, no matter how proud I am of them. And I am. Because for every inchstone met, there are a dozen milestones receding into the distance. Just two minutes ago I put in an application for mobility DLA (Disability Living Allowance) for Boo. I can honestly say it is one of the most heartbreaking documents that I have ever had to write. The catalogue of professionals and list of all the things he cannot do is just too much to contemplate.

But what I know deep down, even if it is hard to summon up this feeling in these rare, dark quiet stolen moments is that the feelings of desperation I feel on his (and if I’m being totally honest, mine and his father’s and sister’s) parts make it all the more important to chronicle and celebrate his achievements.

And this has to be the biggest of the past few months. Speech.

Now don’t get too excited and think he’s reciting the Gettysburg Address all of a sudden. Or even a single sentence. But Boo’s speech is still coming on a bundle. Words he had before – ‘Mum’, ‘Dad’, ‘up’ (meaning: pick me or else, Mum), ‘go’ (meaning: why are you so blinking slow at everything, Mum?), ‘yeah’ and his current favourite ‘no’ – are so much more distinct. And he has got a pretty impressive range of other phonic sounds now, most of which he will say on sight of the relevant jolly phonic flashcard. We are still struggling with s, z, v, z and h but we hope they will come with time.

And he has all of his vowel sounds now: the last one ‘ee’ arrived out of nowhere one day just before Christmas. He still struggles to put these sounds together. He can say ‘p’ and ‘l’ and ‘ee’, for example, but if you ask him to say please he says ‘eeeeeeeee’. But it’s a mighty strong start nevertheless.

It’s all about putting the building blocks in place and seeing where we can get with them. Building up from sounds to single words. He has new ones every week or so at the moment. A new addition is ‘ewlp’ meaning ‘help’. My personal favourite, because it is always said with a cheeky smile on his face, is ‘I duck’ meaning ‘I’m stuck’, which is code for I’m a toddler get me out of here! I can’t wait to hear what comes next! Once you have words, it’s all about putting them together of course. And Boo is trying out that fun game: ‘Mum, go’, ‘Mum, up’ are the soundtrack to my life. And there are some even more impressive strings of words coming along. The other day I was singing the title music to Something Special (to myself, not Boo, you everyone does that, right?) and I got as far as ‘Hello, Hello’ and was about to launch into ‘how are you?’ when I heard Boo at the other end of the dining room say ‘ow ar oooooo?’ at which point he burst into hysterics at his own amazingness. I squealed so loudly Sissyboo said, ‘Do we need to phone the hospital Mummy?’ Where did that come from?

But best of all is the way that Boo is mimicking speech patterns. Boo does everything in his own way. He isn’t going to follow the whole, phonics, words, sentences, conversation logical progression any more than he is going to roll, sit, stand, walk, run. No, he may only have 20-30 or so words, and have lots of sounds he cannot say at all yet, but he is still trying to replicate the patterns of words and phrases he hears. So if you say ‘garden’ to him he will repeat: ‘ah’ ‘ah’. Two syllables. Two sounds. If you say ‘that was good’, he might say ‘a ah ooo’. It’s very sweet.

But nothing is sweeter than the three little words he has been saying for a few months now. Words he has heard an awful lot since he was born so very, very early: ‘Ah. Uv. Ooo’ (‘I love you’). The first time he said it, I cried. The first time he said ‘Ah. Uv. Ooo. Mum’,

I cried. Of course, I knew he loved me, his dad and his sister before he told us. One of the many things Boo has taught me is how we communicate in so many other ways than through speech and writing. No: I cried for a whole bunch of other reasons. Because he had hit his mark and progressed with his speech at a time when many physical milestones seem more remote than ever. Because it was such a physical effort to arrange his body in such a way as to produce these sounds. Because when he was only 2 weeks corrected age an utterly unfeeling prematurity paediatrician told me my child would likely never speak at all.

In my dimmer moments now I feel like I am back in that awful appointment over 2 and a half years ago. And so I replay Boo’s words in my head and realise that he has made a future for himself that is so much brighter than anyone predicted. And for that, I am very grateful.

Playing, Playpak Style

Well it’s been and gone again, hasn’t it? And I bet like us you were sat there last night talking about how quickly Christmas and New Year passed again this year. I honestly don’t know where the time has gone, even though some of the sleepless evenings over the past two weeks (who am I kidding? two years!) with Boo have seemed to last an eternity. Yep: sleeping is still not Boo’s strong suit. No matter. He has others.

One of the things that makes it go so fast is just how much we try to ram in. You see, I love where we live, a nice town in a nice part of the world that we moved to so that both of us could have vaguely bearable commutes in opposite directions. But the downside is that we are nowhere near any of our respective families and some of our oldest friends. We try to compensate by travelling up and down the country between Christmas and New Year. It always sounds barmy when I explain to others what we have planned. But it has always worked in the past.

And then came Boo.

Boo has had periods of travelling really badly. At the moment, he’s pretty good. So what’s the problem you ask?

Space. Our little boy. Our premmie takes up a heck of a lot of room wherever he is. As I type this at my desk in the dining room, I am wedged in by the therapy bench behind me and a therapy roll under my feet. Rather than the walk in wine fridge I feel I both need and deserve, our kitchen has a standing frame and walker, and our dining room has a Jenx seating system and a Wizzybug wedged next to a sofa. It just about fits.

But what on earth do you do when you leave home overnight or for a few days. None of this equipment can come with us when we go anywhere. Even if any of it were more portable, Boo’s Bug wheelchair buggy takes up more than a third of our estate car boot. But while I can just about persuade myself to leave at least some therapy behind when we go away, I can’t bring myself to leave Boo’s independence or the postural support he so desperately needs.

All I can say, again, is thank goodness for Firefly. You may already have read my post on the much talked about Upsee, which Boo uses for weight bearing and supported stepping when we are out and about or in sports days! That squidges into a soft, compact tote bag, so that gets slung in the roof box whenever we head anywhere. But that doesn’t help with one of our biggest problems for Boo. Seating.

Although Boo is more than two and a half now, he still can’t sit independently. I wish I didn’t have to write that sentence, but it’s true. I don’t know if he ever will. He needs ever less support, but still enough to require adult supervision at all times. This is a literal pain for our backs and no small annoyance to poor Boo, who wants to be Mr Independent.

So all our Christmases came at once this year when we heard about and got one of Firefly’s newest products, the Playpak. It’s a much more portable (you carry it over your shoulder like a large but light satchel) and cheaper (hooray!) version of the Leckey Squiggles mat, for those of you who have tried one of those. Attached by Velcro so strong it would have stopped Dorothy’s house going up in that twister, you can attach the series of u-shaped supports, wedges, straps and bendable but sturdy rolls the Playpak comes with in many different ways to aid your child to meet their individual needs. You can rearrange the rolls and wedges to facilitate supported sitting, or prone therapy (tummy time), side lying and all the things you learn about very quickly when you have a child with physical disabilities. Almost all of the floor-based part of Boo’s physio programme can be done on the mat and I’ve got some new ideas from looking at the online therapy programme the company offers.

We haven’t fully got to grips with all of the possible benefits of the system yet (it has been Christmas, after all, and we were under strict instructions from Boo’s physio to kick back a bit over the festive period). But it is already a fabulous addition to our therapy and play kit. If we actually stop having so much fun in it, I might be able to remember to snap a pic of Boo in it to show you how much he likes it.

For now, though, I’m just so glad that this Christmas the Playpak gave Boo a little bit of independence we could take with us wherever he went. Priceless. Thanks, Father Christmas!

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