Two years ago

Two years ago, right about now, I was having terrible Braxton Hicks contractions. I hadn’t had them with Sissyboo. I was told they were normal. I knew they could be. But I knew these weren’t.

Two years ago, I was really scared despite the excitement of having a new baby. 

Two years ago, I tried to bury myself in other things (Sissyboo, work, planning for our new arrival) so as not to confront my suspicion that things weren’t OK.

Two years ago, I planned to make a note of my concerns and tell the midwife I would see in 3 days after changing GPs. 

Two years ago, I was looking forward to my second midwife appointment in 28 weeks of pregnancy.

Two years ago, everything was different.

Two years feels like a lifetime ago…

…Two years on and as I type this, I have tears in my eyes and the hairs on my neck are standing on end. I can’t quite unpack the emotions to tell you why this is happening. I am not sad, I know that. But I’m not happy either.

All I can tell you is how much I love my little boy and how grateful I am that he made it. And how anniversaries are terribly difficult things when your child is born prematurely, or ill, or disabled. 

 

Happy Mother’s Day

My crafty kids have really gone to town this Mother’s Day. Sissyboo made me no less than 3 cards and a fashion book (no, I’m not sure what that is either, but it’s very cute). Even Boo got in on the action by making a special card and gift at both of his nurseries. In a few days these assorted wares will go in my memory box to be looked back on on Mother’s Days in the future. Who knows what our lives will be like then? How things will have changed by next Mother’s Day or the one after that or even Mother’s Day in 10 years time. Things can change quickly in this parenting game, after all. Oh brother…Can’t they?

Two years ago we spent our last Mother’s Day together as a family of three. I was nervous and excited about the changes that lay a few months down the line when three would become four. But Boo or my body couldn’t hold out or our luck ran out. Or something like that. Whatever the reason, just days later Boo arrived nearly three months too soon. Life would never be the same again. And neither would Mother’s Day.

Mother’s Day starts anniversary season for me, you see. It marks the start of many dates that make me remember the glimmers of a life we once looked forward to before Boo’s premature birth, before meningitis and cerebral palsy. A life that will never be.

That day we changed that life for this. A life that I was totally unprepared for. A life that is full of anxiety and frustration. And a little boy, who along with his amazing sister, make me laugh and live more than I could ever have imagined possible.

This anniversary season I am prepared to be taken off guard. I didn’t know what to expect last year. Frankly, the whole thing floored me. I vow this year not to beat myself up if I get sad on days that should be happy (like Boo’s birthday next Wednesday). But I also want to make sure that waves of sadness don’t overwhelm the immense happiness I should feel because we have Boo in our lives. I vow not to forget how lucky I am.

So to remind myself today, here’s a little homemade something for the Boos. A little note to them on Mother’s Day.

Dear Boos

When I was a little girl your auntie (who was quite a cheeky little thing – don’t tell her I told you that, will you?) used to ask Nanny and Grandad on every Mother’s and Father’s Day when it was going to be Children’s Day. Grandad’s response was as utterly predictable as your auntie’s question was: ‘Every day is Children’s Day!’, he’d say. He had a point, I guess. But we don’t go rushing to Hallmark or Clinton’s one day a year for our kids. We don’t get to exchange cards with soppy words and rhymes, do we? I don’t think you’d like it much if we did. Not Sissyboo, anyway. At six years old you’re grown up, you keep telling me. And Mums can be so embarrassing, you also keep telling me, but with the reassuring caveat ‘Oh, but not you, Mummy’. (You’ll feel that way about me soon enough, Sissyboo, you know…) But one day, when both of you are really grown up, you might not be so easily embarrassed, so here’s a few thoughts for my beautiful kids on Mother’s Day for you to read some time. When you’re ready.

I never really thought I’d be a Mum. I don’t know why, but I didn’t. And then a friend of mine was killed in an accident and I decided life was too short to put off anything you cared about, too fragile to avoid doing things because they seemed like they might be risky. Risk is life, I realised. So we took one. Twice.

And seven years on, I have two kids who are more beautiful, compassionate, clever and funny than it seems feasible for me (with my rudimentary knowledge of genetics – another Boo legacy) to have.

I love being a parent. I love nurturing two young personalities and minds. I admit, though, that it never occurred to me that this would be a two-way street. That you would both teach me so much.

Sissyboo, from you I have learned about how to accommodate myself to life’s vagaries with sympathy, good humour and kindness. Your adaptability and strength take me back on a daily basis. You are wise beyond your years and your brother is one lucky little boy to have you in his corner.

And Boo? I once got a report from school that said my best quality was tenacity. I had to look the word up when I got home. But I can safely say that I only really understood it when I met you. You are the most determined person I have ever met. Remarkably, you show no anger and very little frustration. Maybe you just don’t realise how hard your life is (I hope not). Maybe you don’t care (I hope so). But how you can respond with such enthusiasm and so many smiles and giggles to daily physio, speech therapy, stretching, being told what to do, being asked to perform like a seal in front of relative strangers is beyond me.

Boos, you both worry me enormously. But you both make me happier than I could ever have imagined. I am no saint, but you two have certainly made me a better person, a more socially aware and responsible person. I have a long way to go. I have so much to learn. I know you’ll help me with that, just like I know you’ll be the last things I think of every night and the first things I think of every morning.

You were worth the risk, kiddos. And you’ve proved that I am one lucky lady.

Love

Mummy xxx

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.   

 

 

 

World Cerebral Palsy Awareness Day

Today is World Cerebral Palsy Awareness Day. I wanted to write a new post for today. But the reality is that juggling this life, this life touched and irrevocably altered by my son’s cerebral palsy means I have not had time. What follows is part of a post I wrote in October. It’s a post about what I have learned about cerebal palsy. It’s been a steep curve, to say the least, and I have much more to find out and say. 

One of the biggest battles my son and we as his family face beyond the physical challenges he experiences are the lack of knowledge people have about the effects of his brain injury. If you can take the time to read and share this I would be very grateful indeed.

 

Cerebral palsy is not a progressive condition, but its presentation can alter, in none more rapidly, perhaps, than in the developing child. We just don’t know what particular challenges Boo will face. I don’t know if he will stand independently or walk. I don’t know whether the high tone in his arms will prevent him from writing or feeding himself. I don’t know if his speech will develop typically, whether he will be cognitively challenged or delayed, or whether his epilepsy will return. I don’t know how hard life will be for him.

The not knowing, as I have written about many times on this blog before, is one of the hardest things to deal with in our life. It’s hard on all of us, even and perhaps especially, Sissyboo, who wants to know if her brother will be able to play football or go to her mainstream school. Of course, knowing would make no difference to how we feel about him, but it might help us to plan better, to do all we could to make a difference to him by anticipating the challenges ahead and mitigating them wherever possible.

But for all I don’t know about Boo’s future, I have come to know a good deal about cerebral palsy in the last 18 months. Despite cerebral palsy being one of the most common physical disabilities in children – as the Scope website will tell you, it affects around 1 in every 400 children in the UK – I must admit that I knew pitifully little about it before Boo’s birth.

Some of the most difficult moments in our lives are those where we are met with the prejudice of others about Boo’s disability or their well-meaning attempts to make us feel better about it (‘Oh, I’m sure he’ll walk, he’s a boy and they’re always a bit lazy’, you know the sort of thing…).

I can’t invent – I’m just not creative in that way – but I like to write and have a place to do it here. So this is my modest contribution to World Cerebral Palsy Day 2013. Here are some of the things I’ve learned about cerebral palsy, with a side-order of some of the things I wish people didn’t say to us. Please note, though, that I am not a medical doctor and I am just explaining things as I have learned (I hope correctly) to understand them. For more information, please visit the fabulously informative and accessible Scope website.

1) Cerebral palsy is a neurological disorder most often caused by a brain injury sustained pre-, during or soon after birth. In Boo’s case, he sustained a bilateral brain bleed after contracting an infection (probably meningitis, but the sample taken for testing was contaminated and therefore ambiguous) on day three of life, having been born 11 weeks early. This left him with PVL (softening of the white matter around the ventricles that had become enlarged during the bleeds).

2) The brain injury makes it difficult for those living with CP to control their movement or posture as their brain is telling their muscles to do things that impede voluntary action. This isn’t a nervous disorder (although Boo, like many diagnosed with CP has some difficulties making sense of some of the sensory feedback his body receives in unfamiliar surroundings), neither is it a muscle problem. Boo is neither ‘strong’ nor ‘weak’, though lots of people have said these things to me. His muscles present varying degrees of tone. High tone or hypertonia means stiffness or rigidity when the muscle should be at rest (this affects Boo’s arms and legs). Low tone or hyptonia (which affects Boo’s trunk) manifests itself as floppiness or the marshmallow effect, as we call it.

3) CP can affect one limb, one side (hemiplegia), three limbs, or all four (quadriplegia). The mouth (and therefore speech) can also be affected. Boo has quadriplegic CP, a phrase that seems to really frighten people (and there seems to be a good deal of confusion about quadriplegia and paraplegia). All this means is that his CP affects his arms and legs.

4) There are several different types of cerebral palsy:

a) Spastic cerebral palsy is the most common presentation. Spasticity means high muscle tone (stiffness and decreased movement range). Oh and let me get this off my chest now. Please, please, please, don’t ever use the term ‘spastic’ pejoratively. It is no better than the r-word and often used interchangeably with it. And yes, I take great offence at anyone using my son’s physical disability to disparage others. I consider this a gesture of hate and profound ignorance.

b) Dyskinetic, dystonic (as Boo’s consultants call it) or athetoid cerebral palsy can involve involuntary movements or, as it Boo’s case, rhythmic twisting.

c) I must confess that I know least about ataxic CP, and it is not especially common, but it affects the whole body and manifests itself, as I understand it, in balance problems and sometimes difficulties with spatial awareness.

Like many living with CP, Boo’s presentation is mixed: spastic and dystonic.

5) CP can be associated with problems with speech and it can be accompanied by cognitive difficulties but many people living with the condition face neither of these challenges. Don’t make assumptions either way (that goes for healthcare professionals, too, who in my opinion are some of the quickest to judge!).

6) CP is not, as I’ve already said, progressive; neither can it be cured (those managing the grotesque pantomime of disability benefit assessments take note). The brain injury is static. That said, years of moving in particular ways can cause musculoskeletal problems and lead to painful discolations and multiple surgeries.

7) But, neuroplasticity (the brain’s capacity to rewire around damage after sustaining an injury and something we take for granted in adult stroke patients, for example) is an amazing thing. Some of the latest research in neurorehabilitation is very encouraging and early intervention of various therapeutic kinds can produce good results. Boo has physiotherapy, is under two occupational therapists, will start speech and language therapy and we also attend a conductive education school for parents once a week.

8) But again, I’m going to repeat myself. Never make assumptions. CP affects individuals individually. Two people can have the same diagnosis and present, to use a clinical term I don’t much care for, very differently. And the numbers or words used (mild, moderate or severe, for example) to categorise CP aren’t all that clear. If you want to know how CP affects someone, you need to ask them, or in Boo’s case (because he’ll just grin at you and call you Dada) ask their family.

9) Oh, and CP isn’t a disease. This common slip of the tongue might seem innocent enough, but its implications are far-reaching and profoundly unhelpful. You won’t catch anything from spending time with my son, except, if you’re lucky enough, a love of life, and an infectious laugh that will pull you through even the toughest days.

I would do anything to make the life of Boo and others living with CP better. I wish I could come up with something practical and life-enhancing. Maybe one day. For now, spreading awareness of CP feels like all I can do.

I’ve said this before, but it’s worth repeating. CP is something that many people live with. But it does not define them. Taking the time to understand that, as well as understanding CP itself, could make a very real difference to their day-to-day lives and those of the many of us who love and are inspired by them.

Good News Catch-up: Good News Friday #47-49

Today is Boo’s first TAC meeting. TAC stands for Team Around the Child meeting. We have 10 of the cast of thousands involved in Boo’s care meeting at his nursery to talk about him face-to-face. It’s been a long time coming. 12 months, nearly. And the organisation has been shambolic, to put it mildly. But it is finally happening.

I am grateful. Very grateful. Grateful that busy healthcare professionals are taking the time to meet with us in this way. Grateful that Boo will, for once, be at the top of people’s agenda rather than mid-way down yet another waiting list. I am grateful that The Grumposaur will finally get to meet Boo’s developmental consultant, speech and language therapist and ask them questions I have asked many times before.

And I feel sick. I feel really, really sick. Because the agenda is a tough one. Education and statementing, or whatever the new acronym is and the process that no one seems fully to understand, are high on the list of talking priorities. It has the potential to be overwhelming as we discuss a little boy people are starting to describe as a ‘square peg in a round hole’. A little boy who is severely disabled physically, but seems (for the moment at least) to be cognitively age appropriate. You can’t pigeon hole, Boo, I was told last week. ‘He doesn’t fit the common profiles for disabled children.’ This is going to make a difficult process more difficult, I’ve been told. ‘I don’t think the county is provisioned for kids like him’, I was informed. This stuff is not fun. But it has to be said. We need to start thinking long-term soon. Oh crap…

I have had a big wobble about all of this over the past few days, hence the Twitter and blog silence. I emailed my friend over at Tough Little Cookies about it all. She said a lot of lovely, smart and sensible things, because she is lovely, smart and sensible. One thing really stuck in my head, however. ‘Remember, you know him best of all’. She’s right. Whatever is said about Boo this afternoon will not change how I feel about and dream for him at all.

So, instead of adding to my long list of questions for the TAC meeting, I decided I would finally get round to writing a Good News Friday post, by way of a bit of a catch-up for all of you about all things Boo, and a reminder to me of all I have to be grateful for on a day I really need reminding.

Motoring On: I confess, physio can feel like Groundhog Day. Sometimes I think if I spend another 30 minutes trying to teach Boo to roll I will explode. How much harder must it be for him than me, though? And he never gives up. What right have I to want to do so? The problem is not just the repetitiveness of the exercises (although I try to find new and fun ways of doing the same thing for the 500th time). It’s the fact that doing it every day means that you often can’t see the incremental progress and feel you are banging you head against a brick wall. We’re all about the increments here, I reminded myself yesterday. So I took a step back. I looked at the 100s of photos I have of Boo on my phone and took stock of his achievements. This is what I realised

Boo can sit with diamond-shaped legs (straight legs cause increased tone and his back to curve) for up to 2 minutes unsupported. Did I really just type that? 2 minutes? How did I not notice what an amazing achievement this is? He has to prop with one arm or he topples as his trunk is so wobbly. But he can do this and his saving reflexes, while not totally reliable, are improving all the time.

Last week I took the first ever picture of Boo while I was sitting from in front of him. Usually I have to sit behind him (his bum steadied by my crossed legs) and flip my iphone camera round. This is a huge milestone for us both and the photo is now officially one of my favourite pictures of Boo (and there is a lot of competition let me tell you).

And also yesterday, whether by luck or judgement, Boo rolled once from back to front. He has never done this before, people. Not without help. Not in 2 years. I had left him on his change mat on the floor in the dining room, to get the change bag from the living room, 5 feet away. Sissyboo was in the same room with him, but sat on her chair finishing a drink. I heard a noise. I could see Sissyboo through the doorway and heard her scream, I thought at first with fear. But it was actually a squeal of delight followed by a bit of fear when Boo donked his head on the wooden floor.

He had rolled off his change mat. He was on his tummy. Neither of us could believe it. He had done it. Neither of us had seen it, but he had done it. We then spent 30 minutes trying to get him to do it again. Of course, he didn’t, but he found our efforts to make him do something he didn’t see any need to completely hilarious. We were late to visit a friend as a result.

The roll may have been a one-off. But it might not. Independent mobility might be coming. It is one of the things I wish for most for him. Please let this be the beginning. Please.

Speech: Progress in this department is still very slow, but I feel that his cognitive skills are pretty good, backed by an encouraging Portage assessment last week that identified him as having entirely age appropriate skills except where his physical problems impeded his progress. It’s becoming clearer to me, his Portage teacher and speech therapist that Boo’s problems seem to be oral motor (muscular) rather than necessarily cognitive, although we can’t be totally sure. We are getting very clear ‘yeahs’ from him now, ‘hiyas’, lots more ‘dads’ and the odd ‘mum’, not to mention various other sounds and odd words. My homework for this month is to work on ‘m’, ‘b’, ‘d’ sounds, blowing (he has no clue how to do this as yet), 10 basic verbs on flash cards (and I have finally bought a laminator to make them) and colours. That’ll keep me, I mean us, busy.

Clapping: Clapping was put on Boo’s target list by his old Portage teacher when he was a year old. I wasn’t happy about it being on there. It’s not that I don’t want him to clap, but his arm function is severely challenged. Moving his arms in the necessary way was and is tough for him. Doing it without closing his hands into fists almost impossible. Of course, he kept failing this target. Our new Portage teacher took it off his list. I like his new Portage teacher. And then last week, I said ‘Mummy clap’ after Boo done something well in physio. He copied me. His arms moved well, if not quite symmetrically, so one hand was raised slightly above the other. One hand was open, the other was fisted. But he did it. He only bloody did it. And now whenever you say clap, he has a go.

Conductive Education: Boo loves his conductive education classes. He is worked so hard there, but he has so much fun. He loves his teachers and his little friends. We are so lucky to have found this wonderful place. And he is making such strides there. I know that the School has helped him to achieve all of the things I’ve described above. His propping on his tummy has come on in leaps and bounds. He can hold his head up with nearly straight arms now much of the time. I never thought this would or could happen. He is trying, not very successfully, but nonetheless, to crawl. He can do four-point kneeling easily with splints on now, and without them. This is harder, but he tries, nonetheless, with some success. His supported walking is amazing. He is stepping, folks. Stepping! And he is ahead of the game. His teachers think it’s hilarious, but Boo is always starting the next thing before the class moves on. So when we arrive and everyone is sitting in their chairs, he picks up his name card to give to his teacher, because he knows that’s the next bit. Then he raises his arm in preparation for the vocal exercises. He rolls before the bell is rung for them to do it. He knows the routine. He’s ready for what comes next. He wants to show them he can do it. He mostly can.

So whatever happens in today’s TAC meeting, this is what Boo is like: tenacious, happy and living life with no sense of his own limitations. Nothing can change that. And if I need to re-read this post this afternoon to remind me of this. I will.

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? 

The Invisible Woman: Working with a Disabled Child

We are largely invisible. When we do get on other people’s radars, we are sometimes met with looks of amazement, admiration and pity. More often, in my experience, we are met with disbelief and dismay. We are are a nuisance. We are judged frequently and are often founding wanting. Because we are the working mums of disabled children. We are just not supposed to exist.

Most of us thought and expected that we would be part of the 60 per cent of mothers who work at least some of the time once our children were born. But suddenly our lives altered in ways that none of us could imagine back in those happy days. And now we are some of the staggeringly small 16 per cent of mums with disabled children who work.

We are a subcategory. With the emphasis very much on the sub.

For us, work is many things. It is a necessary evil to keep a roof over our heads and get the bills paid. It is a way to meet the extraordinary and unexpected costs of providing for a child with additional needs, from specialist feeding and seating equipment to major house alterations and house moves. Work is our sanity saver, a place to gain a bit of head space in a life that is often good but also utterly exhausting in ways I never understood before the birth of my son. A life where everything that matters most is on the line. But work is not respite, by the way. Don’t get me started on that. Work may give me a break from my caring responsibilities, but it is hardly restful.

Work is a way of clinging on to a piece of ourselves, the bit of us that isn’t fully accounted for by the name ‘Mrboo’s Mum’, by which the army of thousands that are involved in my son’s care call me, much to my irritation. Work is a bit of us that isn’t defined by our role as carer, the name we are assigned at our children’s birth and that insidiously robs us of the right to call ourselves plain old parents.

And work is a battlefield. We rely on employers understanding the benefits (to them as well as us) of flexible working, just as they rely on our competency. And let me tell you, looking after a disabled child is a daily and never-ending boot-camp in training us to achieve perpetual efficiency, multitasking prowess, and research skills that most PhD graduates (I know because I am one) don’t have. Take it from me, you want us in the workplace. We have skills in abundance. And we don’t have the luxury of being able to remember how to waste time. You’ll get your money’s worth out of us, I promise. Just as the state does. Many times over.

We also rely on, even if we sometimes give up hope for, the understanding of the NHS and other relevant service providers as we get handed with a day’s notice appointments at 11:00 on a working day. We rarely get this understanding, however. The assumption is that we must be full-time carers. (This is never assumed of our male partners, unsurprisingly.) How could we be so inhuman to be anything else? I do care for both of my kids full time, by the way. I just happen to be at work sometimes while I’m doing it. The assumption is that we are perpetually available for appointments and reviews at the convenience of others. Sometimes, we are even expected to be in two appointments at once on different sides of the same building.

I know this, because I have been told and experienced all of these things. I have been pulled up for being a working parent so many times since having Boo. I have been told by a receptionist that it would surely be better for me and my son if I did not work. I have been told by a support worker that I was ‘so brave’ to work when clearly ‘brave’, judging from the disapproving look on her face, meant ‘irresponsible’ and ‘derelict in duty’. I have been told that I am ‘unhelpful’ when I said that I couldn’t take a cancellation appointment at 24 hours notice that they needed to fill for what was a non-urgent routine review for Boo. (Incidentally the same thing happened three months later when I turned down a similar offer of a cancellation appointment that clashed with my daughter’s nativity play at school. Apparently not giving preferential treatment to my disabled child above my neurotypical daughter is another of my maternal faults.)

Moments like these are too numerous and horribly predictable to list in their entirety. Right now, my heart is beating fast with anger as I type them out. But at the time all of these things were said to me, I confess that they made me sob uncontrollably. I’m not a crier by nature, but I can’t swallow the tears when my love for my child is questioned. Maybe I can’t take it because the fact that I use the full flexibility in my job to be as hands on in Boo’s care as I can and therefore work 5 out of 7 nights every week, often well beyond midnight, means that I am perpetually exhausted. Tiredness and steadiness of thinking are not happy bedfellows. Maybe I’m just so ground down by battling the systems, getting appointments, accessing equipment and sorting nursery provision that I have lost my sense of perspective. Or maybe the reason I get so upset, is because the criticism is so unjust and, frankly, offensive.

For all this, I consider myself lucky. My employer is understanding. My job has a degree of flexibility built into it, as does my partner’s. We have battled for and successfully obtained 1:1 support for Boo at nursery. It is not enough, but the nursery and we work around it as best we can. Many are not so lucky. Of course, many mums of children with additional needs don’t want to work. I completely understand that. But I also know of at least a dozen mothers through my immediate circle of acquaintance that have been forced to leave good, fulfilling and important jobs for lack of adequate or affordable childcare or because they were denied access to 1:1 funding. I know many, many more of these women through the blogosphere.

And, as Sarah Collins, of First Touch NNU, a charity that supports families with babies in special care at St George’s London, notes, even if you have an ‘accommodating boss’ and work for ‘a child focussed’ company, things don’t always go to plan for parents who want and try to work. On only her second day back in her job in a children’s theatre, Sarah’s 18 month-old daughter was rushed to hospital with a seziure. ‘It began to dawn on me that paid work was not an option at that point in my daughter’s life’, she remembers.

We have been busily talking about the challenges and benefits of being the working mother to a disabled child on Twitter, Facebook and blogs for some months now. It’s a conversation that came into sharp focus in a wonderful interview Hannah Postgate, founder of Rosy and Bo, gave on Woman’s Hour recently. This has inspired a bunch of us to get together a round-up of our blog posts on some of the issues we face as, what our blogging friend at Areyoukiddingney calls, WMOADC (Working Mothers of A Disabled Child), from the prejudice we are routinely subjected to to the difficulties of accessing what we are told is within our children’s basic human rights: inclusion and education.

Enough already. We may be the minority, but we are not silent. We are not content to be talked at or about. We can speak for ourselves. And we want and need to be heard.

Please take time to read and comment on some or all of the posts below and if you know of others on this subject please email me (premmeditations@gmail.com) and I will add them.

Blog Round-up

‘Work, Kids, Special Needs – Making it Fly from Rosy and Bo

Returning to work is tough after kids, full stop. So Hannah almost felt a bit of a fraud bleating on about this topic, until she considered one of her children has autism and learning disabilities. Disabilities, hospital appointments and appropriate childcare all play a part in the difficulties mother’s like me face getting back to work. But there are also the barriers we face from employers, not to mention the sheer exhaustion and strain making it an impossible prospect for many mothers.

This is not something we can continue to leave unsaid, as Hannah writes. We need to talk about it, air it and try to change it.

How Can I Make Working Work?

This powerful and moving post appeared as a guest post on Premmeditations and was written by an amazing woman who wants to remain anonymous as she relates how the birth of her son left a family who had it all – a career, cars, a house – losing it all terrifyingly quickly.

Nice Work if you Can Get it from Areyoukiddingney

Not only does she have one of the best blog names out there, but she coined the acronym WMOADC. If you have no idea how working mothers of disabled children are sometimes treated by those who help us to look after our children then wait for the scales to fall from your eyes in this moving post.

Working Mum, Disabled Child, and the Myths Inbetween from Complicated Gorgeousness

With a combination of wit and pragmatism that only Alison possesses, here’s a post about how it can all work when you go back to work. And how it could be a whole lot better.

‘A Full-Time Mama’ from An Early Start

If you were thinking that the difficulties of returning to work and finding appropriate childcare when your child has additional needs are a British problem, think again as this lovely post from An Early Start, which chronicles the life and adventures of the amazing micro-preemie Jax, born at 23 weeks, makes clear.

‘Working with A Disabled Child’ from Itssmallsworld 

How getting back to work for the parent of a child with disabilities is made all the more difficult due to lack of governmental forward thinking and understanding. And thank goodness for some local common sense.

Dr Mr Gove (& Assorted Pals) from Gingerbread and Sunshine

If nothing else persuades you of the injustice and financial fuzzy thinking that lies behind the government’s policy towards families of disabled children, this post will. Let’s hope it wakes the MPs up, too.

Those Who Can, Do from Little Mama Said

No one is immune from disability hitting their lives suddenly and without warning. This moving post from Little Mama Said explores the irony of being a special needs teacher, not being able to teach after having a child with special needs.

‘Did They Allow Your Special Needs Kiddie into Nursery?’ from Mama Lewis

Mama Lewis shares her experiences of returning to work after the birth of the lovely May.

We Work! (We do. If You’d Let us) from Mama Lewis

A second and equally brilliant post by Stacie Lewis that poses some provocative questions that should be blissfully easy to answer: ‘Why is it less important that I work full-time than it is that my husband does? What does being May’s mother mean? Does it mean my life is not worth as much as hers?’

How Can Work, Work? from One Off Ordinary

A thought-provoking post from a fabulous mother of two (one of whom has additional needs and is now at school) on the logistics of trying to get back to work.

Let’s Talk About Work, Baby from Orange This Way

She tells us to sit down and have a cuppa to read this. But if this post doesn’t make you want to stand up and do something when you’ve finished reading it, nothing will. All you need to know about being a working mum to a disabled child, and much more besides.

‘The Chaos of SEN Childare’ from Premmeditations

This year new funding sees many disabled children able to access government-funded childcare for up to 15 hours per week. But have they thought this through? Here’s my experience of the battle for 1:1 care for our son at his nursery.

‘Nursery Provision for Special Needs – The Good, The Bad and The Ugly! from Tough Little Cookies

Can you only get a place for your little one if you know who to ask, how to ask and how to ask again (and again and again) if you are told nothing is available? For every working parent who manages to secure a nursery place for their child how many have to give up their job because adequate nursery support does not appear to be available? These are just some of the questions the mums of the Tough Little Cookies ask in this hard-hitting post.

Where Has All the Footwear Gone? Or What About a Shoe Amnesty?

My sister has a thing about shoes. Not quite a Carrie Bradshaw kind of thing, but a thing nonetheless. I’ve never got it, really. For me, shoes are purely functional. I like them to look nice, but not to cripple me, and I have a minimal number of pairs: running shoes (about to fall to bits), black flats, brown flats, boots, wellies and boots with heels (with a hole in the sole that means I can’t wear them when it’s wet).

I’ve never really liked buying shoes for me. But I’ve always like doing it for Sissyboo. Shoes are so much nicer (especially for girls) than when I was a kid and wore horrible black lace ups or boring old t-bars to school. She often has three pairs on the go at once. But crikey, shoes are expensive! We always have Clarks shoes for school for her, and they are blooming brilliant, but everything else is supermarket bought. Sorry Sissyboo. Who has that much money for shoes that last a few months?

But the niggles of constantly buying shoes for rapidly growing kids’ feet becomes a whole other league of problem when your child needs specialist orthotic footwear, as Boo does. His high tone in his legs means he has a tendency to toe curl, stand on tip-toe (sometimes) if you hold him up in a vertical position, scissor his legs if you try to facilitate supported walking, and for the insides of his feet to rotate up 30 or so degrees so that he is balancing on the outside of his feet rather than the soles. None of this is good for his feet, legs or hips.

When just before Christmas Boo first put Piedro boots on, a specialist brand of orthotically designed footwear for children with problems from hypermobility to severe cerebral palsy, I couldn’t believe the difference they made. His feet were grounded. The soles of his feet were pancaked. If I could have looked through the leather, I think his toes would’ve been nearly flat.

And the effects on other parts of his body were remarkable too. His bottom, which tends to stick out, James Cagney style, without his shoes on went in, in alignment with his back. He stood straighter, Gene Kelly style, despite having a trunk made of the stuff of marshmallows. It was amazing. His posture changed. We could secure his feet into his specialist seating at home and nursery and he sat better, he could eat better and play more easily. He could practise going from sitting to standing in ways that were too difficult before. It changed so much in our lives. A pair of shoes did that. Seriously.

Our physio department bought these shoes for Boo, which retail at about £120. We were grateful, of course, and promised to give them back when he’d outgrown them, which we hoped wouldn’t be too soon. In February (only 3 months after he’d been fitted for the previous pair) we measured him again and he had gone up 2 sizes and needed new ones urgently. We looked through the catalogue and made a choice (he has very wide feet, so only some of the range was available to him). We found some lovely ones. They were put on order.

And then a few days later we had an apologetic phone message to say that the budget had been cut and we needed to buy them ourselves. As they were so expensive we were told that we could try other brands, Kickers, Ecco or Timberland (all cheaper at around £50), although we had been told before the budget cut that Boo’s problems were such that only orthotic footwear would really do the job. And Kickers and Timberland don’t do width fittings. One size fits all doesn’t help kids with very wide or narrow feet. They just weren’t right for Boo, although I know many parents of kids who have CP swear by them.

We get a fair bit of stuff from the NHS. He has, for example, just been approved for Lycra garments and we are grateful they have agreed to fund them as we think it could be the difference between him sitting independently and not. (It’s an investment now that could save them money later, aside from the obvious health and standard of living benefits to Boo.)

There are lots of things we don’t get, however. The second-hand arm splints we have been given, rather than having him measured him for new ones, are some of the mankiest things I have ever seen, for example, and a lot of seating and other equipment others get in other areas for their kids, we have had to buy ourselves. I do work, of course, so that helps enormously. And I could, I guess, afford £120 every 3-6 months for shoes on top of everything else.

But what about all the shoes that are already out there and not being worn? Where are all those shoes dispensed by physios, or bought by parents whose physio departments won’t or can’t fund orthotic footwear (I know they don’t at all in many areas) and that are worn for a couple of months by often non-walking children? What a waste of money and resources!

To say orthotic shoes are sturdy is an understatement. They look like they would hold up if you ran them over them with a Range Rover. Three months of wear by a largely non-mobile child means they have lots of life still left in them. And there must be thousands of pairs out there, sitting in physio cupboards or those of parents like me, just waiting to be worn by kids like Boo.

After doing some research, I decided Boo really needed Piedros or Fitzkidz boots, rather than Kickers or Timberlands (the latter just aren’t wide enough). I spent hours on Ebay and special needs boards and forums trying to find second-hand boots in the right size for purchase. One problem I kept coming up with was that people usually list them only by size (which are given in European not UK measurements, just to confuse things) and rarely with a width fitting. I know how big Boo’s shoes need to be, but his needs mean they have to be the right width too. Surely this must be true of all kids who need orthotic footwear. In case you have boots like these and don’t know what the width size is, as they don’t put this on the sole, it’s the first digit of the long number that appears inside the boot.  If you have a Piedro or Fitzkidz boot with a number inside that begins with a 5, for example, it’s width 5. (A kind soul on a forum explained this to me.)

To cut a long story short, I managed to get Boo a pair of Fitzkidz boots from my Twitter and blogging friend, One Off Ordinary. Right size, right width. She didn’t even ask for any money for postage, because she is one heck of a lovely lady. OK, they are a teeny bit scuffed at the toe, but they are in lovely condition and Boo’s posture is great in them. I was and am so grateful to her. And then around the same time, I saw and bought a pair on Ebay in the next size up, similarly a bit worn at the toe, but structurally sound and with soles that look like they have never ventured outside.

I was relieved to sort this out. But it took a lot of time. And the thought of having to do this for every pair of shoes every few months for the next few years on top of everything else is not appealing. But it’s certainly easier on the bank balance than forking out hundreds of pounds a year on shoes.

And my environmental conscience feels better too. There are so many shoes out there. Maybe it’s because we think they’re just shoes and not the important pieces of specialist equipment they certainly are that we squirrel them away and don’t pass them on or sell them to others who might desperately need them and for whom £120 for another pair of shoes is just too much.

I want to do something about this. Something like a shoe amnesty, where those of us with Piedros or other orthotic footwear can tell people what we have lying around if others would like to have them. There are places where people can sell boots (Ebay being just one), but I think there are other people who might just want to give things away for free, especially if they can see they might be able to get the next pair for their little one for free too.

I haven’t worked out the logistics of this yet. My friends over at Tough Little Cookies (and boy, they have had some ridiculous shoe dramas recently) suggested a Freecycle page. I don’t know enough about Freecycle yet to know it that would work, but I will be on the case in the next month of so and you can nag me about it if you don’t hear anything.

In the meantime, if you’d be interested in this, or perhaps you have a pair of shoes you would be happy to give to others now, you could leave a comment below and I could gauge potential interest and maybe put folks in touch with one another so all our kids are standing a bit better and taller.

From my conversations with people on email and Twitter about this in the last few weeks, this is a big problem for many SEN parents and it doesn’t seem to be one that will go away. So maybe, as with so many things, perhaps we should look to each other for solutions rather than the hard-pressed and under-resourced healthcare professionals because frankly, we understand the problem better than anyone else and it just matters more to us.

How many times have you thought since you started this SEN journey that people ought to try to walk a mile in our shoes? This might be one way we can try to make that a reality.

Happy Anniversary

We’ve got some happy anniversaries coming up this year. My parents will be celebrating their 40th wedding anniversary next month, while The Grumposaur and I will have been together for two decades (!) in October.

But for the most part, since having Boo, anniversaries have left me in a cold sweat, panicky and a bundle of raw emotions that I can’t sort out. I’ve blogged about many of these days. The anniversary of Boo’s C-section date (10 weeks after he was born) prompted me to write the most read post on this blog to date. The anniversary of his due date (11 weeks after his birthday). The anniversary of the day he came home. A good day. And then much later the anniversary of the onset of his epilepsy. Indeed this whole blog started because I needed to come to terms with an anniversary: his first birthday. It was a lovely day and a very difficult one. A day to celebrate him, but also to come to terms with the challenges he faces and all that will likely never be.

People tell me it gets easier with time. But they also tell me that the bittersweet nature of many premmie anniversaries never quite goes away.

This year I wouldn’t say I’m more prepared for things. Who knows how or what I’ll feel this time around. But as I enter anniversary season this year, I am at least prepared to be unprepared. And I vow to try (because frankly, I am not very good at this) to be kind to myself and let myself off the hook if things get tough. If I need to cry. Or get cross. Or go and sit in a room on my own for 10 minutes.

Last year anniversary season started for me with Mother’s Day. I remembered so vividly that I could taste and smell the same day the year before. It was a day when I had finally started to look properly pregnant but still had months to go before my son’s birth. When we enjoyed a family day trip to Brighton. A day of excitement, of looking forward to a life that wouldn’t look as we’d expected when it eventually came just days (not months) later.

This year the season’s started earlier. Because this time last year I ran a half marathon. For Boo. For the charity Bliss. I know I did it. I have the pictures and medal to prove it. I ran 13.1 miles in 2 hours 11 minutes. I still can’t imagine how. Our lives were frankly horrendous back then. I was severely depressed, acutely sleep deprived. Boo’s epilepsy and repeated hospitalisations put a massive dent in training that was vital for me, a non-runner all my life. Heck, I was still breastfeeding.

Boo got me to the end of that run. His determination and mine for him. My gratitude to Bliss kept one foot in front of the other. My gratitude to those who had sponsored me ensured thekept moving. I wept buckets when I crossed the finish line. It was one of the hardest things I have ever done.

And now I am training for another half marathon in September. And the memories of last year are flooding back.  Of how tough things were. I have re-experienced the same dry mouth and damp palms as I ran back to our front door, hoping that my beautiful sleeping Boo (I almost always have to run at night) had not had a seizure while I was out and his Dad was looking after him.

I don’t like feeling that way again. It’s hard. So hard.

But those moments are fleeting. Mostly on my runs now I hear my daughter cheering me on at 10 miles and see my Dad’s tears. I feel good that I did that run in adverse circumstances. That I raised so much money.

And above all, I feel grateful that now is not then. I like to put a positive spin on things on the blog, but I’m always truthful. I would be a liar if I said life was easy. It’s bloody impossible some days. But it’s also very good and so much better than I could have hoped it would be this time last year. OK, Boo’s still not sitting for long, rolling or standing. But the gut wrenching fear is no longer the signature note of our lives. He is well. He is still seizure free. He is happy and thriving according to his own schedule.

Like all of the anniversaries we’ve had since Boo’s birth, this one has brought mixed emotions. But the good far outweighs the bad. I hope this is the way of things to come as we plunge into the season of remembering. If not, well I promise not to beat myself up about it.