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…

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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.

 

 

 

Good News Friday #72

I always think the weeks go quickly, but this week has gone at warp speed. It started with two inset days and now we’re totally into the new school year, homework, violin practice and snooze buttons on my alarm. In weeks like this it’s even more helpful to take stock and remind myself of the good stuff before I forget. So here goes, another Good News Friday, which I’m linking up to Reasons to be Cheerful.

1) Girl’s day in. My life is pretty manic. To be honest, I never knew life could be so complicated before I had Boo. But of course, if I resented the complications of our life now it would be like resenting him, which I don’t. Not for a minute. I’ll take the stresses and frustrations. All of them. Because they mean we have Boo, who brings more joy to our lives than I could ever have imagined. But I have to admit I do regret one thing about the complications of Boo life: the time taken away from his sister. It is so hard to give her the attention she needs and deserves when so often his needs are so much more immediate. I miss our time together. I miss that I can’t leave his side even for a second to prioritise her unless someone else is with me. We used to have a lovely Homestart volunteer who enabled me to , but have no help, to spend two hours a week with her, but we have no nearby relatives or respite now and the juggling is a bit tiring. But Monday was a fab day. Boo was at nursery and Sissyboo had an inset day. I offered to take her to London for a mummy-daughter day out but said she could set the agenda for the day. Where did she want to go? Not London this time. Turned out the answer was nowhere. She wanted to have a craft day at home. In particular she had two puppet theatres we had started to make and had never finished. Six hours, two pairs of scissors (yep, I broke one pair cutting up card) and a lot of giggles later and they were both done. And they looked mighty fine, I must say. But not as good as I felt having a whole precious day with my rapidly growing little girl. Which brings me onto …

2) The start of Year 2, which has gone well for Sissyboo. She had a bit of a wobble on day one, just lining up for class, but it passed very quickly and she has loved being back with her friends and adores her new teacher. A huge relief.

And Boo has done his own moving on. He’s moved into an older class in conductive education, which we attend one morning a week. It’s daunting to be with older kids and to have to learn so many new things (I mean for me, Boo isn’t easily unsettled even by things that are really hard for him). It’s also hard (again more for me than him) to be with bigger kids (all are at least 6 months older and are all independently sitting and some crawling or standing or walking). But he is so up for the challenge and totally determined. We may be lagging far behind at the moment but he’ll pick up these new skills in his way in his own time. I know it. Oh and a little inchstone was met today that I had almost given up on. More on that soon.

and finally 3) my running is going pretty well. I still find running long distances very hard, especially with my carer’s back trouble, but I am going faster and am so encouraged by other people cheering me on that I just know I’ll do this half marathon in just over two weeks. If the Boos can push themselves and never give up, so can I.

OK, those are my good news highlights. I am hoping for lots more next week after an important weekend for us. I’ll keep you posted on that. And do let us know of your good news this week. We love to hear from you.

 

 

 

Decluttering: Hard on the Heart but Good for the Soul

mrboosmum:

For #ThrowbackThursday I am reposting something from this time last year. The post turned out to be a bit of a phoney, I must admit. I did put aside all the things that Boo couldn’t use that his non-special needs sister had. But it was too painful to sell them then. I put them in a cupboard and forgot about them. But in 10 days time I am doing a nearly new sale to sell old clothes and toys. Some have sentimental value. Many do not. But the pain that was behind this post feels just as real to me now, even if it has deadened a bit into a dull ache. Do I sell Sissyboo’s old jigsaws knowing we need space for walkers and standing frames and therapy benches? Makes sense, right? But when doing so means not just giving away things but a life you thought was yours and never will be, believe me, it’s tough. Thanks for reading.

Originally posted on Premmeditations :

I read a lovely post the other week by the fabulous Learner Mother. It was about September and her new year urges to get her life sorted and ultra organised. I recognised these feelings. It’s partly a symptom of working in Higher Ed. I always operate according to two years at any one time: the calendar year and the academic year. And for me the academic year has always felt more New Yearsy (that is absolutely a word, before you go running to the dictionary…) than New Year itself. It’s something to do with the weather being better and not feeling weighted down by all those mince pies, I think. In September I want to plan, file, spring clean, declutter and otherwise sort my life out.

This year is no exception. But I admit, I’ve hit a brick wall.

Decluttering. It’s not something I usually have a problem with…

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Making a Statement: Part III

As promised, here’s the latest installment in our statementing journey. You can read my previous two posts here and here (they’re short). But if you’re even shorter on time the gist is that we feel that the support Boo is getting in nursery is not up to the task of meeting his needs. This isn’t about school yet or even what kind of educational setting  he would best thrive in (mainstream, SEN, mainstream with SEN unit – I make it sound like we have an embarrassment of riches don’t I? – that’s not so, sadly).  For now, it’s about getting Boo’s needs formally documented, getting a binding agreement of how to start meeting those needs and eliminating the uncertainty we currently live with that any support he gets could be withdrawn at any time.

We will be some of the last people to go through statementing now that EHCP is in place. It was a conscious decision on our part to enter into a system that was tried and tested and known, rather than gamble on something that looks good but about which people’s knowledge differs scarily widely.

Timing it all to meet the deadline before EHCP came into force meant we got the LA’s agreement that they would assess Boo for a statement in late July. Just when half of the NHS, all educational settings and many LA folks are on holiday and us, of course. Fabulous timing, Mrboosmum!

I emailed everyone as soon as I knew that reports would be due on the 28 August, not wanting then to have to wait until the paperwork arrived from the LA. If I hadn’t been so proactive, we wouldn’t have a report from Boo’s fabulous conductive education setting, which he attends one morning a week with us and which turned round one of the most detailed reports I have read about Boo in a day.

I had gathered as much documentation together as I could prior to putting the statementing application together, so was less worried about the health side of things. I hope I’m not being naive about that. Since his birth 2 years ago we have amassed one massive A4 ring binder of Boo reports already and I have about another half a folder to file.

But I was concerned about the Ed Psych report. We had never met an Educational Psychologist before. I was led to believe it would be someone from the Portage team, but as Portage is sadly ending for us, I wasn’t sure. As week after week of the school holidays passed and our holiday loomed I felt more and more nervous we wouldn’t get to meet her or him before the deadline. This wasn’t someone I could approach myself as I didn’t even know who we’d been assigned to. I had screwed up by awful timing.

And then 3 days before we went away on holiday she rang. We explained that we would be going away (our LA officer had suggested we might have to drive the 5+ hours back from holiday to meet an Ed Psych because of the inconvenient timing of our application) and she agreed that was silly and that she would meet us at home the day before we went.

It wasn’t ideal. Boo was distracted. His auntie was visiting to look after his sister and he wanted to play not be assessed and talked about. She didn’t have time to assess him in nursery, which is a real pity. She was lovely but said she didn’t know what she could add to existing reports, since there were so many, or why we even wanted a statement given that Boo was in receipt of discretionary funding. I explained to her what I had previously explained at the Parliamentary Inquiry into disabled childcare. She heard the stress levels in my voice rise as they had in Parliament and she understood. ‘His current 1:1 does not meet his needs. He needs more. It needs more careful management.’ Yes! She agreed with us.

Going on holiday knowing that this meeting had happened was a huge weight off my mind. I drafted all our documents, a lengthy and sometimes painfully depressing task, and put it out of my mind (well, sort of…).

The deadline for all paperwork was last Friday. The meeting is on an unspecified day this week. Maybe today. I have seen the Ed Psych report now too. It is a full and accurate assessment of his needs. Boo is a bright boy there is no concrete evidence either way that he has a learning disability, but there is plenty of evidence that he is a little boy who wants to learn but for whom every aspect of the curriculum is difficult to access because of his physical disabilities.

I wish it said in black and white what the Ed Psych said in person. He needs more support. More hours of and more targeted support but, of course, these forms don’t work like that. Why ask professionals the right question when you can ask them another and make your own mind up about what the answer should be? The answer, of course, will be based on resources as much as if not more than Boo’s need, no matter what the rhetoric suggests. Maybe EHCP will be different…

Now we have to hope that the weight of evidence we and others have submitted will convince the LA to think about issuing a statement that addresses the impact that Boo’s CP has on all aspects of his learning and development. My hope is he gets more support. My hope is that his physical barriers to education are not going to be used as a way to write him off in cognitive terms or expectations capped. And my hope is that some of the strain and worry of taking on much of what should be happening in an educational setting at home might be alleviated. But all we can do now is wait and see. I’ll keep you posted.

Holidaying SEN Style

We haven’t been in Kansas any more for a long time, Toto. Some people call this place Holland, but that makes me feel a bit sad for the Dutch. As you most likely know, Boo, our gorgeous, cheeky, two-year-old, is our second child, but in so many ways, we are starting from scratch bringing him up. I remember being bamboozled the first time I put a nappy on his sister (back to front, of course). But Boo has seen me having to measure precisely the most absurdly fractional doses of meds, learn words like hypoxia and periventricular leukomalacia (and know what they mean), turn into an amateur physio and twice (please never again) administer oxygen.

It all seems very run-of-the-mill now (not the oxygen, mind you). But we are always finding new things to learn and challenges to overcome.

Holidaying SEN style is the latest in a long line of firsts for us. You see, up till now, we’ve mostly gotten away with it. Boo was pre-toddler age this time last year and no one expected him to do much other than be pushed about in a buggy. But now his buggy is an adapted one (a funky, if a bit industrial looking wheelchair by another name). He can’t sit in highchairs, access beaches easily, will wave and say hiya but won’t engage in toddler chat with other kids and grown-ups and we can’t manhandle the Bug over steps.

Accessibility has become critical to us all. This was the first holiday when we realised certain (in fact many) places and activities had to be off the agenda. That said we had lots of fun and did lots of things, some of which I hope to blog about soon. But for now, here are some of the many things I learned about SEN holidaying and which will certainly have a bearing on our arrangements for next year.

1. Of course, being me, I had a mad panic and made about 15 lists and spent a long day packing for all eventualities before we went away. What I have realised is that holidaying in this country where there are things called shops and where we can speak the language, the only things we couldn’t forget were Boo’s meds (inhalers and anti-seizure meds) and his DLA (Disability Living Allowance) letter to prove he wasn’t: a) big for his age; b) lazy; c) or that we weren’t tightfisted people trying to get into tourist attractions more cheaply by getting me in as his carer.

2. Plan, plan, plan. Don’t spent 3 months packing next year, woman, but do plan every big day out well by looking at the web and making calls if necessary to check access arrangements about parking, lifts etc. The day we turned up at Bodmin Jail on a rare non-planned day out and saw the no disabled access/no buggies sign was not a good one.

3. Accept that even when you plan, you can’t foresee everything. Like, for example, the fact that the disabled parking spaces in Polkerris are as narrow as a shoe box if nearer the village than many non-blue-badge spaces. My back still hasn’t forgiven me for that one

4. Don’t lose you sense of humour. The numerous ‘disabled must pay’ signs in Cornish car parks really annoyed me. I mean really annoyed me. I have no objection to paying for parking but the wording was appalling. Note to self: lighten up.

5. For the love of God, don’t forget battery back ups. The AC adaptor that plugs in Boo’s white noise machine (and without which he can’t sleep) got broken on our way down to Cornwall. Emergency bedtime dashes to about to close shops are stressful.

6. Don’t expect anyone to get a good night’s sleep or wake up in the same bed they tried to fall asleep in while away.

7. Teething nappies (see 6. above) and Lycra garments are sworn enemies. One evening I used 5 Ariel liquitabs and two rounds of vanish to end poo-gate. I am still traumatised by the experience.

8. Don’t fight it. I admit we spent little bits of the holiday trying to stick two fingers up to the limits Boo’s CP and buggy reliance put on him and us all. We sometimes just tried to do the kinds of things we would have done before he came along. Don’t get me wrong. I am all for full inclusion and access and I don’t accept that anything is off limits for him. He can and I will help him do anything he wants to do (within reason). But the timing and context has to be right. There’s just no sense trying to get down to the remotest parts of Heligan. He can see tropical plants and use rope bridges at other places, like The Eden Project, where he did both of those things. Remember, when he is enjoying himself we’re all enjoying ourselves.

9. That said, a holiday has to be for all of us, and that includes Boo’s fabulous big sister. She takes a lot of persuading to leave her brother to do anything, but she deserves to swim out to jetties in the sea and go crabbing and rock climbing. She’s an adventurous 6-year-old. Tag teaming it isn’t just OK. It’s essential.

10. Cut yourself done slack. I know. Those words are actually coming out on my computer screen. The temptation is to spend family time on holiday as therapy time (no appointments or normal life to get in the way). But holidaying with a child with physical disabilities and little of your regular kit (no standing frame, no walker, no seating system, for example) is hard enough work without trying to meet all your therapy goals. We just had the buggy with us (with an amazing Godsend of a tray we bought for it), his GoTo seat and his Upsee. We couldn’t have done anything without these things, but couldn’t do everything we normally do even with them all. And we took the opportunity to see new experiences for Boo and a change of scene as a kind of therapy. They were for me anyway.

So next year I will be better prepared, although I am sure there will be new challenges to meet too. The biggest will be finding accessible accommodation and some form of safe sleeping for giant Boo, who sure as heck won’t be in a travel cot then. And I’ll be sure to take more Vanish. Lots. More. Vanish.

Do you have any tips for SEN holidaying? I’d love to hear them.

Good News Friday #71

OK. It’s been a while, I know. I actually had to trawl through my own blog archive to see when I last wrote a Good News Friday post. And apparently, the last time I wrote my weekly update of things to be upbeat about was May. May! Obviously, this is ludicrous. A ton of good things have happened in the interim, including a whole bunch of new inchstones achieved by Boo, many of which I have documented on the blog. The latest, in case you missed it, is here.

So what’s taken me so long? Well, my recent holiday made me see what should have been plainly evident. I was/still am a bit burnt out. I couldn’t see the wood for the trees and although I kept blogging through the darkness, or rather blogging kept me going through it, I was uncertain about whether to continue with the blog any more. I’ll say more about that next week, but a clue to my decision is that I am committed to starting Good News Friday again and hope that linking it up with the uplifting Reasons to be Cheerful linky will give me the impetus I need when things seem harder than I want them to be.

So here goes. You’re not going to get 3 months of good news in one post, I promise, just a few recent highlights.

1) The holiday. The Boos are all still speaking to each other after 2 weeks away together.

After last year’s holiday, which I sincerely thought might be our last, this is a huge thing. The holiday last year, our first prolonged stay together since Boo’s birth made painfully clear, if they weren’t clear enough before, that ours was a different kind of family of four life than we had envisaged. We went away only to get some unpalatable home truths. It was not easy to stomach. But we all needed to know, of course.

This year’s holiday brought a few more. No more holidays clambering over coastal paths and climbing up rocks and nipping into any cafe we felt like even if you have to use a spiral staircase to get to the seating area for us. We also were reminded how people like to stare and are prone to say silly things. But we also found out how much Boo loves the sea and aeroplanes. We saw daily how much his sister adores him and how powerful her death stares are when directed at people who look out of turn at her little brother. And I got so much from quality time with my kids, a rare commodity in a life dictated by therapy, appointments, school days, homework and afterschool clubs and my job. I needed it. I really did.

2) Running. With my half marathon a little over three weeks away I had to continue running on holiday and I did. I managed 6 runs, including a 9-miler in torrential rain on the Camel Trail. My back is still not playing ball all the time, but it is getting stronger and so am I. I will do that run. I know that now. And that’s a very good feeling.

3) Meeting new old friends. I must be getting bolder as I get older. In the last few months I have met in real life some of the wonderful people I have come to know in the blogosphere and Twittersphere. I guard my anonymity quite fiercely, not because I am a precious kind of person, but because I have a job and frankly, I don’t think I could write this blog as I do knowing people I work with or meet through my work could read it. The blog is too important to me not to be able to write things as I see them. But I have met such amazing people since starting Premmeditations and having and taking the opportunity to meet some of them and their amazing children has been frankly fabulous. The last one involved the best cream tea I have ever had and a beach!

Right good news over for this week. I’m sure they’ll be lots more next week.

Ojos World