Monthly Archives: June 2014

When to Admit Defeat?

The question mark in the title of this blog post is important. This isn’t one of those posts I write when (I think) I’ve worked something out. No: it’s a post trying to figure out something that I have been mulling over for weeks with absolutely no success whatsoever. I am genuinely asking you, blog readers (all three of you) what you think. Because I can’t work this out. All I know for sure is that, one way or another, I have to.

You see, when your life become a battlefield, as it sadly but inevitably does when you have a child with additional needs, conflict starts to become the norm unnaturally quickly. You battle to be listened to. To get onto the waiting lists for the right clinics. To get to the top of them. To get the right equipment. And the right support for your child. For your family. For you.

Few of these things happen without conflict. And these battles are not only external. Often you find yourself in conflict with yourself. Knowing when to shout up and when to pipe down, when to stamp your feet or hold your tongue…These decisions can be tough calls. You are at war with yourself and your natural inclinations several times a month. Or week. Or even day. You tie yourself up in knots.

I am a mess.

And then there is the biggest battle of all, With the clock. That tyrant time.

24 hours a day. What a bloody poor bit of planning that was. Days need to be at least 30 hours long, even when your child’s additional needs deprive you of at least 3 of your promised 8 hours sleep a day. How else are you supposed to work and shoehorn in 5-7 appointments a week (we have 5 this week, 5 last and 7 the week before)? And all the daily therapies? And look after your home (yes: I found out I forgot to renew the breakdown insurance in the most annoying way possible and just realised Sissyboo’s PE kit for tomorrow has not been washed). And make sure everyone eats?

The last 2 weeks have been unusually bad. We have had a host of unforeseen and upsetting problems at Boo’s nursery. (I think things are improving and will blog about them if and when I can be sure that’s the case.) The Grumposaur has been away for over a week of the last 3. I have been snowed under at work and working beyond midnight regularly. I have had to take Boo to 12 appointments. I have had to get everything ready to apply for statutory assessment, which three people at our LA have told us will be in vain as Boo is too young in our LA’s, if not the law’s, eyes. I am sleep deprived and my back is feeling the strain on the week I have been told my NHS physio has to end (I’ve had the allocated 5 sessions). In the local park today a mum in the playground asked if I had been in a car accident…

I don’t mind telling you, since there’s only 3 of you reading this after all and I know you won’t tell anyone, that I am on my knees. I cannot keep this up. I am exhausted. Mentally, emotionally and physically. I look grey. I look tired and every bit as old as the 38 I will be later this week. Much more, in fact.

There are too many balls in the air. In fact, most are on the floor at the moment. The battle isn’t conceded yet, but I admit that I feel like waving the white flag. I may feel differently tomorrow, but today, like yesterday, I feel I can’t carry on like this.

I can’t be this tired and worn out and be all I need to be for Boo. And that battle, is not one I can give up on. I have to fight for him. If I don’t, who will?

I’ve come to the conclusion that the only way to win this skirmish is to give some ground. But which ground? And how?

I can’t give up me time. Other than my running (which I am doing to raise money for a charity that has helped us and at the encouragement of my physio, who keeps emphasising how physically fit I need to be to be Boo’s carer) I don’t have any. Other than writing this blog. And even my blogging time has been cut drastically in the last month. I don’t even make time for essential things. My Captain Caveman hair (yep: no hair cut in 10 months) is the new in thing, right? And I don’t say this with an ounce of self-pity, by the way. This is just the way things are and have to be.

Boo’s therapies and appointments are non-negotiable, as is the lamentably measly time I spend with my lovely daughter, whom I miss so much even though I see her every day.

And I can’t spend less time overseeing what a lovely American friend of mine in a very American but astute way calls ‘life management’. The house is just about ticking over (no breakdown cover and emergency laundry aside) but could easily turn into a health hazard with time cut from the paltry few minutes a week I spend trying to keep it going. No: can’t shave minutes off there.

Which leaves work, which matters so much to me in so many ways and which I so want to keep hold of for all of us Boos. For goodness’ sake, I have spent so much time in the past few weeks adding my voice on the blog, in the media and even in Parliament to those others talking about hard it is for parents (and specifically for mothers) to work when they have a child with additional needs.

I want to try to keep going, to fight back at the pressures to stop working. But I can also see that work is one of the few areas in life where I could just stop doing something. The consequences would be drastic. We would lose our home. We would likely have to move out of area. Our daughter would have to move schools. And I would lose another piece of me.

Plenty of people have done this before, of course. Are doing this right now. Again, there’s no self-pity here. Just utter bewilderment.

I don’t want this to happen, but increasingly, I feel it might have to.

So there’s my battle. A choice that may get decided for me. Do I battle on, or give up this fight, knowing that if I do give up, I would just be trading one set of fights for another.

You have to pick your battles, I guess. But which ones are worth it?

I think they all are, in truth. But I’m not sure I have the energy to keep fighting them all.

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Testing, Testing, One, Two, Me

This post means a lot to me, although few people have read it. I wrote it a year ago, the day before Boo had the diagnostic tests that would confirm he had quad CP, severe brain damage and an X-men chromosomal abnormality no one understands. In so many ways out lives have moved on, but I still play triage every day. And I feel just as strongly about my desire not to fail my kids no matter how testing things get.

Premmeditations

It’s another big day in Boo Land tomorrow. I know… I need a better blog post opener than that. I’ve been overusing it lately. But to be frank, that’s because we’ve had a tonne of big days in Boo Land lately what with all the anniversaries of what happened or should’ve been. I’m done with it all now. I want the big days to end. I want a bit of peace. I think, I hope, tomorrow might be putting us on the road to that elusive destination.

You see, tomorrow Boo has his big diagnostic tests: MRI (to get the completest picture of his brain damage to date), a lumbar puncture and full bloods and urine tests to rule out genetic or metabolic disorders. We are, hopefully, on the path to diagnosis. A path, I hope, that leads to cerebral palsy, for that, unlike genetic or metabolic disorders, doesn’t scare…

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The Day I went to Parliament

I still can’t quite believe it. In the last 7 months I have been to the Houses of Parliament twice. I wouldn’t have been once had it not been for this little blog. The first was for an event to mark World Prematurity Day. The second time was last week, when I was invited to be one of 6 witnesses for the Parliamentary Inquiry into Childcare for Disabled Children cross-party select committee, which is being led by MPs Robert Buckland and Pat Glass.

I have been meaning to write a post about this since we went. I want to write it, in large part, to thank Every Disabled Child Matters, Contact and Family and Working Families UK for all their hard work in pressing this issue and getting parents of disabled children and young people with disabilities heard. But every time I have tried, I have been too overwhelmed by the task. Speaking in Parliament is one thing, writing about it, apparently, is another.

I guess I haven’t quite processed it all yet. It was a highly emotional afternoon.  I met, for the first time, a number of women I feel I know already through this fabulous online community. I had to introduce myself as Mrboosmum to people who know more about me than many of my real-world friends and colleagues do. I met Katherine, whose posts on disabled childcare over at Orange this Way have made me cry and punch the air on more than one occasion. I met Hannah (and Rosy!), from Rosy and Bo, who has always been there with a metaphorical shoulder for me to cry on on Twitter. And I met Mama Lewis, whose blog has taught me more about cerebral palsy than any book or any one individual ever has and whose determination and love for May has inspired me for the past 2 years.

I felt privileged to be in the company of these women (and others) and to meet some of their children. In fact I felt rather more privileged in this, if I’m honest, than to be in our august seat of political power (despite my love of history and interest in politics).

But I also felt a weight of responsibility. I think we all did. Because each of us knew that the battles we faced in getting our children into nursery or a breakfast or holiday club so that they could exercise their fundamental human right to an education and we could satisfy our need (whether that need be financial, emotional or intellectual) to work were just the tip of the ice berg. We could only speak for ourselves, but we were being asked to speak for so many.

There is a fine blog post here by Richard Dunstan of Working Families UK that summarises some of the many substantive points that were raised in the afternoon, and I urge you to read it. I won’t and actually don’t think I can yet go through it all here. It’s too much. You see the MPs and peers shook their heads and told us our experiences made for difficult listening. There was shock in the room and there were damp eyes. When accounting for your life makes other people react like that, it’s a deeply unsettling experience, I can tell you. I simply haven’t come to terms with it yet.

But of course, these reactions are what made the day so important. All of us witnesses live and have lived in different local authorities. All of us experience ourselves or have children with different needs. But we sung with one voice. LA provision is patchy at best. Money to support children with additional needs in daycare settings (whether pre-school or pericurricular) is not ring fenced. It is administered with great disparity across the UK in ways that can seem variously bureaucratic, ineffiecient or deeply prejudiced. Disabled children and young people are rarely treated as individuals. They are often talked about as problems or headaches. Or much worse.

We talked about things that had been said about our children. Things that had been said by people working in or for LAs. I can’t repeat them here because I don’t want to think about them today. (Problems with Boo’s nursery and entering the statementing process means all this is unusually raw for me at the moment.)

But suffice it to say that everyone agreed there were a host of problems that needed to be addressed. But of course, they cost money. And of course we had all thought about this, and every one of us had a response to this. We did the maths, for example, on the cost of paying carer’s benefit (and the state not receiving our taxes) versus that of statutory 1:1 provision for disabled children in a daycare setting. We compared the extraoridnary costs of our children living in residential care as young adults because they had been denied access to educational programmes when young that made living independently or with minimal carer assistance possible. We compared the cost of expensive medical procedures for, say, tube feeding versus skilled professionals teaching children to eat from a spoon.

The word powerful is overused these days, I think. But if this testimony wasn’t powerful, well … I don’t know what is.

Evidence for the Inquiry is still being collated and a report is being compiled for ministerial consideration in early July. I don’t know what will come of this. I am hopeful the Inquiry along with the new Code of Practice and the launch of EHCP will make a difference. But of course, even though I have only been living this SEN life for 2 years, I know to be on my guard. I am used to false hope and promises. I am used to the world turning fast in all but the most important things in life, which move glacially, if at all.

But I take a great deal from last Tuesday, nonetheless. I can see that people care. I can see that people can’t change things they don’t know about. And they don’t. They really don’t know how things are unless we tell them.

And I can see that while we may feel kicked in the teeth and guts on regular intervals, young people with disabilities and their parents are a formidable, compassionate and resilient bunch of people. Underestimate us and our children at your peril. We have to be heard and we will be heard. Our kids deserve nothing less.

Space to Change

Two weeks ago, Boo had an opthamology appointment. He is quite long sighted, which has given him a double squint. He wears glasses most of the time to correct this. Who am I kidding: he is supposed to wear glasses most of the time but spends most of his time throwing them around the room for attention. It doesn’t bother him much and his glasses are adorable. He looks like a mini-Professor. But we hope he will outgrow it so he doesn’t need surgery.

There was good news at the last appointment. The glasses are doing a good, if not perfect, job in correcting the squint and his vision is improving. And in other good news, we went in on time! Usually opthamology runs 90 (yeah, count ’em, 90) minutes late.

So it was a good appointment all round really. Well, nearly.

Well actually, not at all.

You see, Boo, expecting to go in 90 minutes late, decided to fill his nappy 5 minutes before we were due to go in. So we had a problem I dread when I go to appointments with Boo: the problem of finding somewhere clean and safe to change him.

You see, Boo is 2. And he’s a large 2. His Dad is 6′ 4” and Boo has never really understood he was born prematurely. So I can’t put him on a baby change table. He is too big. I asked where the nearest disabled toilet was. I was directed to it.

Fortunately, it was in the new wing of the hospital. It would be fine, I thought.

It wasn’t. Not. At. All.

First, I struggled to get me and Boo’s adapted buggy through the supposedly wheelchair accessible door. After much breathing in we got in there. When we got there, we were greeted with a new but unsanitary room, with urine and dirt on the floor. There was nowhere to put Boo except on the undersized change mat I carry about with me on the floor. Since the mat is too small for his body length, I put it under his bottom and legs. I took off my cardigan and put it under his head, knowing I could wash it when I got home. And let me tell you, it didn’t go in on a 30 degree wash!

The process was unhygienic and frankly degrading.

Thankfully, Boo is too young to feel that yet. But I did. And he will feel that way in the future. Because Boo is very aware of what’s going on around him. He is only going to get bigger and potty training is not going to happen any time soon. He may be in nappies for years.

And this was a hospital. Not a village church hall. A hospital. A place where a good number of disabled children can be found every single day. And they had no suitable changing facilities. And the best alternative they had was unclean.

This is wrong. Plainly wrong as well as posing health risks to our little ones. This is a question of health and of dignity.

I was going to blog about this experience straight after it happened, but delayed things when I learned of the ‘Space to Change’ campaign that Firefly are launching. They have lots of exciting plans in the pipeline, but for now, they are interested in collating as much feedback from parents and carers as they can about how we toilet or change our children when you’re out and about. What are the issues we face? And what examples of good practice have you seen? It’s an issue I feel passionately about and am happy to support Firefly in their efforts.

If you have experiences you would like to share, there is a quick and easy survey you can fill out here.

Please do take a few minutes to complete this and share the link (https://www.surveymonkey.com/s/YLNV2ZV) as widely as possible.

Yesterday, I was at the Houses of Parliament giving evidence to an Inquiry into disabled childcare (blog post to follow!). One of the many things I learned was how invisible our problems are to other people who lead more typical lives if we don’t make ourselves heard. I also learned how shocked people can be by things we all know and have come to accept as our everyday reality. I have learned that people might want to help us change things. So here’s another opening for us to be heard. Please take it.

And in the meantime, I will dreaming about this bathroom.

 

 

I am …

I am tired. So tired that my eyes feel hot as well as heavy.

I am tired because I don’t get enough sleep.

I am tired of all the appointments. Seven this week. Yes: seven.

I am tired because my already long to-do lists get longer after each appointment.

I am tired of not getting to the end of these lists. Of not even really beginning them.

I am tired of my head being filled with so many things that it can’t switch off.

I am tired of putting out metaphorical fires.

I am tired that just when one hurdle is overcome another problem rears its ugly head from where you least expect it.

I am tired of anniversary season. 

I am tired of spreading myself too thinly. Of being a parent, a partner, a therapist, an advocate, a runner and fundraiser and an employee.

I am tired of work filling every minute that isn’t filled with everything else. 

I am tired of people, kind people, telling me I am amazing to be doing so many things.

I am tired of telling them I only get away with doing so many things by doing each of these things badly.

I am tired of not being good enough, of not having enough hours in the day. 

I am tired of chasing my tail.

And mostly, I am just tired of being tired.

 

Carers Week 2013

I embrace the term carer more easily this year than last, even though (or perhaps because) the challenges are just as big.

Premmeditations

This week is Carers Week. In addition to raising awareness of the vital role that the staggering 6.5 million carers play in families and communities, this week encourages individuals to self-identify as carers in order that they can receive the practical and emotional support they might need to guide them through what is one of the most important, undervalued and demanding jobs (and yes it is work: hard work) we can do.

Since the birth of Mr Boo at 29 weeks last April I have been a carer. It still doesn’t feel right writing that. Caring is, after all something that we parents do. It’s on the list of necessary qualifications for the post of mother or father. Although as an aside, I think caring is still too often perceived as a gendered – i.e. feminine – trait, which is a disservice both to the women so often culturally…

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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.

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