World Cerebral Palsy Day 2013

mrboosmum:

I can’t believe it ‘a World Cerebral Palsy Awareness Palsy Day today. Here is a post I wrote last year for that day. A year one, we’re still learning, but it has become part of our lives now. If only others could accept it as we do.

Originally posted on Premmeditations :

Wednesday 2 October 2013 is a big day for us. Boo will be exactly 18 months old (actual, not corrected), it will be 6 months to the day since I wrote my very first blog post, and it’s World Cerebral Palsy Day.

World Cerebral Palsy Day is a great initiative. I’m a big fan of awareness days and weeks. I’ve written in support of several (World Meningitis Day, Volunteers Week, Carers Week, National Breastfeeding Week) since starting this blog and World Prematurity Day in November is looming large in my mind at present.

But at the same time, I worry that awareness days and weeks have their limits. I worry that for each of those to whom advocates manage to speak, there are many others who don’t hear or listen, or who do, but when the days or weeks have past, lose sight of…

View original 1,441 more words

The hardest juggling act of all

And for my next trick…

Yep: like all parents, I spend a lot of time juggling. Heck, I spend a lot of time blogging about juggling. And guilt. Let’s not forget the guilt. And of course, these things are intimately related. A huge chunk of the knotty mass of guilt I feel on a pretty much daily basis originates in my feeling that I am a poor juggler. That I don’t get the balance right in my respective responsibilities as Mum, carer, advocate for Boo, partner, employee, and colleague. That I let people down on a regular basis, including myself, but especially my kids.

If you read this blog regularly, you would be forgive for thinking that the hardest circle to square is the working mum/parent-carer one. I wrestle with it daily and the moment it is pretty all consuming. But it’s not the hardest juggle of all. Not by a long way.

The hardest is being Mum to two children, one of whom has extreme and complex additional needs and one who does not.

Sissyboo is just about the best sister anyone could have. Boo is incredibly (there just isn’t a word hyperbolic enough to describe this) lucky to have her in his life. I watch their relationship develop with intense pride and amazement. Her life was as much turned upside down by Boo’s early arrival and all that came with it as anyone else’s and all of this happened in the year she started school.

Cerebral palsy doesn’t faze her. In fact, she is very knowledgeable about it. She has started to question the world around her, the policies and prejudices that affect her little brother’s life. She instinctively, now, notes the accessibility (of often otherwise) of places we visit and clocks lifts and accessible toilets sometimes before I do on trips out. She has the best stare for non-blue badge holders who park in disabled parking spaces because they are in a hurry that I have ever seen. She helps with Boo’s therapies. She makes him sticker charts and buys him presents with her pocket money entirely off her own bat if he hits a new inchstone. She reads to him and plays with him. She forgives him if his wayward arms whack her round the face accidentally or if he pulls her hair.

And mostly, she just loves him. Unconditionally. As I do her.

She may not realise it at the moment, but she has given up a lot for him. Time with me, days out, days without worry. And I worry so much about her missing out.

You see, Boo’s needs will always be the most immediate. He can’t do a thing (except watch TV) without adult support. And she is nearly seven. So when it comes to the two hours before bed what do I do? Shoehorn in as much therapy as possible for Boo? Goodness knows he needs it. And then what to do when Sissyboo asks me to do Hama beads with her? What about when she needs help with her homework and he is screaming because he is uncomfortable and needs stretching or otherwise stimulating because he can’t just get up and walk to the toys he wants to play with.

Sissyboo does after school clubs most days. This is partly because I work, but it is also so I can fit a bit more therapy time into Boo’s day as he doesn’t get enough 1:1 support at nursery. And I don’t feel good about paying someone else to look after my daughter so I can do therapy with my son. Not at all.

Nor do I feel totally OK with all days out having to be geared up around her brother’s needs. Of course, I want him to be as happy as possible and like to be prepared wherever we go, but I hate, for her sake, that so many days out turn out to be about what we can and can’t do with Boo. The only way to avoid this is to split our family of 4 into 2 families of 2, not always practical, and not at all what any of us wants.

We used to have a volunteer from the wonderful Homestart come and help us out for 2 hours a week. Boo was well looked after and I had 2 hours a week with my lovely girl. We used to do crafts or make cakes or watch a movie. That ended 10 months ago now and we both still miss it enormously. I try to take her swimming on my own once a week (like I take her brother on his own once a week too, although she has to come watch). I let her stay up a bit late on Fridays and Saturdays and help me make dinner and do crafts. I plan odd days out with just her. These are so much fun.

But I’m still not used to this. I wish I could get the balance right. I wish I could be sure I was doing enough to support her through school and just being nearly 7. But I can’t. When push comes to shove, Boo often has to come first. He can’t help it. It’s just the way it is. I just hope she grows up not minding. I hope she grows up knowing how amazing she is and how very, very proud I am of her.

If you have any tips on how to juggle the needs of siblings with different needs, I would love to hear from you. This one really has me stumped.

 

Good News Friday #72-75

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

So, here are some good news highlights:

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

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

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

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

 

Today…

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

Boo is two. Yep: two.

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

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

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

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

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

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

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

Mind over Matter?

Hello. It’s me. I’ve been very quiet lately, I know. Things have been crazy busy. I mean CRAZY BUSY. With appointments. With work. With my running. (I ran a half marathon yesterday! Yep: I’m surprised, too.)  And with the therapy.

Post-holiday I can say that I am well and truly back on the therapy horse that threw me. And all the appointments that stopped as we and seemingly the entire country were on holiday in August have restarted with vengeance. We had three (yes: three!) before 11:00 this morning, as well as three phone calls from OT, one from wheelchair repair and one from early years this afternoon. It’s only Monday and my head is spinning even before we head towards the other two appointments we have later in the week.

I confessed to Boo’s physio this morning that I am feeling like a headless chicken. (She wasn’t surprised.) I told her what you will likely already know. We just can’t keep up with all the programmes and targets. Boo might be able to. But I can’t. I’m done in.

Fortunately, his physio is very sensible and lovely. She told me to just keep doing what I’m doing. I don’t need to do more, she assured me. I do plenty as it is. I just need to keep things ticking over.

Ticking over? I get the sentiment, but it’s not the right metaphor in my view. Well, not unless she had in mind an annoyingly loud clock you sometimes confront in an unfamiliar house, the incessant tick tocking of which  keeps you awake at night. Yep: that’s what therapy feels like to me at the moment. Please, please don’t let it feel that way to Boo…

To be honest, I don’t feel like I am keeping things going or ticking over. No: lately I feel as if I am letting things slip by making choices about what to squeeze into our jam-packed days.

Making choices …That sounds good, doesn’t it? It sounds empowering (as in: we’re choosing to focus on walking in his walker this month, rather than rolling you know).

Let me tell you, it doesn’t feel empowering at all. I feel like I am giving up on certain things to prioritise others. If I am choosing things, then I feel that there’s a very strong possibility that I’ll make the wrong choice.

Lately, the biggest choice I’ve had to make is the balance between Boo’s physical and cognitive development. Now, don’t get me wrong. I know full well that the two go together. I understand that we experience knowledge physically as well as intellectually. I also know the mind and language powerfully affects our bodies and how we think about them (without the mind games I played yesterday, my tired old heading for 40 bones couldn’t have run a half marathon, for instance). But when you brain/body connection is disrupted by neurological damage things get more complicated.

For the first year and a half of Boo’s life, we had two things on our mind as his parents: survival and early intervention to help aid his physical development. I wanted to know if he would walk one day and phrases like ‘If he can sit by 2 he’ll walk by 5′ haunted me and pushed me to push him in physio. (He didn’t, by the way, and the later seems ever more elusive as a consequence, but I haven’t given up on it.)

Oddly, Boo’s cognitive development did worry me as much as the gross motor stuff. After all, he smiled at 2 weeks corrected age. He had great eye contact and was super sociable. He babbled at the right age, if somewhat unconventionally. It has always been the case that Boo has loved books and clear as day that he loves being in this world. Even his infantile spasms diagnosis and all the hellish prognoses that followed didn’t shake my faith too much that Boo was bright. That he could learn things. That he would want to learn things. That he would teach me things.

I still believe all of those things. But as Boo gets older, and his physical needs become all the more apparent to others, I see them make assumptions about his brain based on his body. I see people behave as if he doesn’t understand them when they talk to him.

I know they are wrong. OK I think the intricacies of my brief phone conversation with a friend about Syria earlier toady went over his head, but there is nothing I say in a day-to-day domestic context that I don’t think he gets. He responds to requests. He asks for things by looking at them and increasingly by pointing and words. But how can I prove this? How can I show them what I know he knows?

You might say, as some of my family members say, why does it matter? If I believe and know he can understand (and I do) what does it matter if he doesn’t make like the performing seal in clinics to demonstrate that fact outside of an environment he’s comfortable in?

Well of course, on a really fundamental level, it doesn’t matter. Not a jot.

In others, in statementing terms, for example, it matters hugely. It doesn’t take much to evidence Boo’s physical needs: they are usually described as severe in reports and global. But to prove his potential, both physical and especially cognitive seems a Herculean task. If we are to stand a hope in heck’s chance of finding a suitable (let alone ideal) educational environment for Boo long term, we need to be able to show both of these things clearly.

Increasingly in the past month, I have been worried that I have been so focussed on Boo’s physical development and on the many motor milestones not yet and maybe never will be met. But now I am increasingly worried about supporting him in his cognitive milestones in order to ensure Boo can assert his will in the world. Can be heard. Can be seen as a person rather than a person with a disability.

And I have been thinking a lot lately about whether it’s a coincidence (or not) that Boo’s speech and language has developed so much recently. Don’t get me wrong. He is still very delayed in speech. But he is coming on really well lately. His oral motor skills are improving all the time. He can suck. He can blow. He has lots of speech sounds now (most consonants and all vowels) and an increasing (if still small) number of clear and emphatic words. In the last two weeks, we have a totally reliable and determined no. It’s a beautiful sound, let me tell you.

Would he have done this if we hadn’t relaxed on the physio over the summer, I wonder? Or did easing up in one area of his development help him come on in leaps and bounds in another?

Whatever the answer, it’s good news. I know that, of course. But going forward, I just don’t know what balance to strike and what choices to make. Because ultimately, you see, I don’t want to admit there is a choice to be made.

Mind and body … both are important. I don’t want to priortise one at the expense of the other. I’m not yet prepared to give up on any milestone for Boo.

But maybe I’m being unrealistic. Maybe we will have to make choices. Maybe we have to prioritise. That feels like a real weight of responsibility.  I just hope we, I, make the right choices. But mostly (I hope not too far in the future) I hope Boo can tell me how he feels about all this himself. I hope he can make and articulate as clearly as I am sure he will be able to these choices for himself.

 

 

The Chaos of SEN Childcare

mrboosmum:

I can’t believe this post is a year old. Since then I have been proud to give evidence with other parents and disabled young people to the Parliamentary Inquiry into disabled childcare. And I am still at a loss. Our own childcare situation has worsened since in ways I haven’t explained fully on the blog and may do so more. Maybe we will get the statement we have applied for. Maybe it will help. The new SEND reforms are supposed to make a difference. I hope they do. But I fear it will take a long time to put into practice the promises it makes and still longer to change the attitudes of those who think I make a choice to work (interesting word – although I accept many in my position have no choice at all, and I realise I am lucky). These people also clearly think I made the wrong choice and so must live with the consequences. I feel at an impasse. I feel lost. I feel like I can’t go on like this some days. But I feel I owe it to my kids to keep our home, keep within the area do my daughter can go to school with the friends. I feel lost.

Originally posted on Premmeditations :

I am Mrboosmum and I am a working parent. I feel like I have to write that in the style of a group therapy confession. Not that I feel I need to talk that way to other parents of kids with special educational needs. To be honest, most conversations I have with mums who have kids with disabilities or additional needs go like this:

Them: So you work then?

Me [on the defensive, thinking they will judge me]: Yes, but my employer is understanding and I am fortunate enough to work flexibly to minimise the effects on Boo. I take him to all his appointments.

Them: Oh, I’m not judging you. You have to do what’s right for your family. I’d give anything to be able to work some of the time.

or

Them: Oh I’m not judging you. I tried to but couldn’t make it work…

View original 1,267 more words

Why blog?

The question isn’t a rhetorical one. It’s one I’ve been asking myself a lot lately. I think bloggers (I still think of them as people other than me, but I guess I am a blogger by now right?) are prone to asking themselves this, especially if stats are low, or comments aren’t forthcoming, or your Tots100 score drops. I’d be lying if I said I wasn’t bothered about such things. I am a bit. But probably nowhere near as much as I should be if I want to call myself a blogger.

No. For me the trigger for the question was something altogether different: the end of another blog. A blog I have read avidly (I think every single post). since a few months after Boo’s birth. A blog that has got me through some pretty tough times. A blog that has given me hope and a blog that has made me feel less alone even though I have never met its author and she lives many thousands of miles away.

The blog is Ain’t No Roller Coaster and if you haven’t read it, stop reading this post and go find it now and read it. From start to finish. You won’t regret it. It’s a blog by the wonderful tell-it-like-it-is Tatum and her family, including her youngest and amazingly cute son Owen who was born extremely prematurely, has a PVL diagnosis (like Boo) and a CP diagnosis too. Owen’s journey – the family’s journey – is not over, of course. But the blog is. The last post on ANRC was published on the 31 July. The blog had achieved what it set out to do, Tatum wrote. Time to stop.

And this started me thinking. Why do I blog? What is it that this blog sets out to do? And how will I know when I have done it? And is the goal of blogging ultimately not to need to blog any more?

Of course people blog for all sorts of reasons. Some blog as a career or to set up businesses. Some blog as a kind of journal keeping (this wasn’t my intention but even I find it useful to look back at the blog and see when things happened and how far we have or haven’t moved on since). But I don’t blog primarily for any of these reasons. I’m much too selfish. For the most part I think my blogging is motivated by the things I struggled to explain in this blog’s first ever post: to connect with people; to feel less alone; to find my voice. I blog, in other words, for therapy.

And I suppose if these are the main reasons I blog then maybe the goal of blogging is perhaps not to need to blog any more. Maybe the goal is to be self-sufficient to the extent that talking to friends and family and healthcare professionals is enough. To be at peace.

Somehow I can’t ever see that happening.

And partly I don’t want it to. My disquiet with the way things are – not that Boo was born early or has CP, you understand, I love him for all he is – but that life is made so hard for him by all that comes with these things – the bureaucracy, the appointments, the endless therapies, the prejudice and so forth ,keeps me going. The challenges he faces make me determined to tell other people about what life is like this side of the SEN track, to try in my own limited and flawed and probably hopelessly idealistic way to try to make a difference.

I know Ain’t No Roller Coaster did that. I don’t think this blog has. Maybe if and when it does I can stop blogging. Maybe. I don’t know.

To be honest, I don’t really know exactly why I blog. All I know is for some reason, and despite my dissatisfaction with Premmeditations (that I don’t post enough or advertise posts well enough, that I don’t connect with as many bloggers as I should, that the blog is always at the bottom of the to do list), I can’t stop.

So maybe why blog is the wrong question. Maybe I should be asking myself why can’t stop.