Monthly Archives: August 2014

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.

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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

How far Do you Have to Come to Go Back?

For #ThrowbackThursday a post I wrote this time last year and which I am struggling with again this year. Have you gone to a NICU reunion? Did you stay in contact with SCBU or NICU friends? And what does it say about me, I wonder that I can’t go back. I get chills every physio appointment for Boo when I look up and see the NICU window by Boo’s cot space even now. Would love your thoughts.

Premmeditations

When I got back from our family holiday I was dreading the backlog of  ‘To the Parents of Mr Boo’ letters that would be on the doormat. Any parent of a medically fragile or disabled child will know what I mean. The endless appointments that take so much juggling to attend, the dashed hopes when it’s not the appointment you’ve been waiting for for months and really need. The summaries of appointments that coldly reduce your child to a set of terms, conditions and prognoses. There were plenty of those, but the letter that really floored me was slightly different.
I knew what it was before I opened it. You see they’d addressed it to Boo but given him my surname (The Grumposaur and I are not married). It’s the name he went by in hospital even though we begged them (for the sake of my struggling-to-bond partner) to give…

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Right There: That’s It!

So, we’re back from our holidays now. After many blog posts, much agonising and even more self-tormenting (these are skills I am very accomplished in, it turns out), I allowed therapy to take the back seat and just get on with the lovely, if exhausting, business of being a family away from home.

Of course, all the while I harboured this secret fantasy that it wouldn’t matter. That we would go to Boo’s first physio appointment in 5 weeks (which we had this morning) and he would amaze his lovely physio by rolling, crawling and doing a tango despite having not done his programme for two weeks.

No: I didn’t really believe this would happen, but there’s always hope right? But you know even if I had tried to make the holiday therapytastic it would have been really tough without all Boo’s equipment (my back is living testimony to that as I type this). We spent much of the holiday battling spectacular teething (last 4 molars) and the even more spectacular nappies that came with it. This was not the place or the time for much therapy. A lightbulb moment for me, I can tell you. There were many on holiday. I’ll tell you more soon.

Letting go of therapy was hard but was important psychologically for me, I think. I hope it will prove good for Boo, too. But it is hard to let go of inchstones. To see them recede further from view.

But then, of course, as always something comes along and surprises you. You spend weeks, months working on one thing and then something else entirely unexpected and all the more delightful for that comes and photobombs your life.

Right there. Out of nowhere.

You see, when I say we did no therapy with Boo while away, I’m not being entirely truthful. I did put him into different positions each day and did some stretches. I also did some of his flashcards for his SALT as our list of September targets is huge and hugely depressing. But I also spent a lot of time talking to him and talking about the different things we were seeing out and about. You call it living; we have come to think of it as therapy, too.

Finding stuff that both kids could enjoy taking into account the 4 year age gap between them and the small matter of cerebral palsy and a not-made-for-accessibility Cornish landscape was challenging at times. I will blog more about our experiences and some of my thoughts about them soon. But one thing we could rely on for a good holiday day out we could all enjoy was a trip to a farm or wildlife park.

Boo loves animals, just as his sister did at the same age (and still does). He finds monkeys completely hilarious, although he does have a tendency to see the world as voice-activated toy and can’t understand why monkeys won’t gambol about and make funny sounds just because he says ‘more’.

And farms are a good SALT opportunity. We can say the names of the animals and get Boo to try to copy the words. We can ask him what noise the animals make. He knows quite a few of those now. So we were wandering around Dairyland Farm near Newquay a couple of weeks ago when Sissyboo (always prone, like her mother, not to be able to see things immediately in front of her) said ‘Where are the pigs, Mummy?’. They were about 4 feet away in an enclosure looking very happy in lots of mud. But before I could show her, something totally unexpected happened….

…Boo got out his peter pointer finger as we call it in these parts (and which we have been trying to get his tight little fists to isolate for ages). With it crooked ET style he did no more than direct it towards the pigs and said ‘dere’. 

We couldn’t believe it. Had he really just understood a question and responded with a physical gesture and a verbal resply? And did he actually point at the right animal and use the right word. Yes, yes, yes, yes, yes, yes!

So we did it again. Where are the ducks? A point (OK a bit crooked, but definitely in the right direction) and the cutest sound I have ever heard: ‘dere’. Where’s Daddy? ‘Dere.’ Where’s Sissy? ‘Dere’. He was pointing in all directions. It was just like that bit in the film of Matilda where she starts lifting the contents of her kitchen by pointing at them. And it was just as moving.

It was a lovely moment and has been repeated daily since. (I even got him to show his physio this morning.) And it reminds me of a life lesson I am often in danger of forgetting. Sometimes you don’t need to be always thinking about the next milestone or challenge ahead. Sometimes what you need to be focussing on is right ‘dere’ in front of you.

Well done, Boo! I am so blooming proud of you!

 a4641-smallsteps 

 

 

Tommy at the Farm: A Book about a Boy who just Happens to be Disabled

If you read this blog regularly, you have probably gathered that books are a big part of my life. When I was a kid, my head was only out of one long enough to tell other people about what I was reading. Books kept me happy through wet school holidays or distracted me from making sandcastles on the beach. They made me smile and laugh when I was miserable. They took me to places, other countries, times or people’s minds and taught me some of the most important things I know. 

My greatest frustration since being parent is not having much time to read for fun any more. One of my greatest parental pleasures is reading to my kids. I love seeing them discover for the first time books I have read and re-read for decades. And I love finding new authors I wouldn’t know but for having them. 

But books, like all things in life, have taken on a new meanings since having Boo. Books aren’t just books now: they are learning tools and therapy aids. I love to read to Boo for the sake of reading to him (and he has always loved books) but I use them much more self-consciously than I ever did with his sister to teach him things by getting him to point (a developing skill) to named images and sound out noises or the speech sounds his therapist has given us (anything to get away from those bloody flashcards I see in my sleep). It hasn’t dampened my love of reading to him, though. Books are so much more than building blocks of sounds and images, after all.

But one thing has started to bother me increasingly since I started reading to Boo. What do books tell him about the world he lives in, I wonder?

I worry that they tell him that he isn’t supposed to be here. 

When was the last time you picked up a children’s book in which a main character or even any character was disabled? I asked Sissyboo this a few weeks ago. She mentioned the cousin in The Secret Garden, a horrible little boy, neglected by his father, who becomes nice and around the same time (a horrible non-coincidence) learns to walk and not be so disabled any more after making friends with Mary and Dicken and learning to plant things. Of course, The Secret Garden was written 100 years ago and things have changed. People surely (please) don’t assume physically challenged people are morally challenged any more. But what recent examples of books are there to prove we’re more enlightened now? Sissyboo’s suggestion was Frank Matthews in The Dumping Ground, who has CP like Boo and for whom she has quite a soft spot. But of course, that’s TV. I don’t know if Frank is a character in the books as we haven’t worked our way through them all yet. Sissyboo is a bit too young for Tracy Beaker, despite her loving the books. Boo certainly is.

Sissyboo scratched her head. I told her I hadn’t asked her a trick question and I was struggling to think of examples, too. And apparently we’re not the only ones. I was delighted recently to learn about Quentin Blake’s new book, The Five of Us,  which isn’t going to be about disability as such, but which will have several characters who just happened to be disabled at its heart. But my delight suddenly turned to dismay when I realised what should have been painfully obvious. This was such an extraordinary occurrence that this was considered news by all major papers and news channels. 

Of course, books don’t have to reflect our lives. I didn’t read Robinson Crusoe when I was 9 because I fancied living on a desert island (let me tell you: I would be rubbish at surviving on a desert island) or because I identified as a child with what seemed at the time to be a very old man. I read for escapism to read, about lives other than mine.

But it’s one thing to find in books a world you can escape to. It’s another to read as a disabled child and find you live in a world that is unacknowledged.

So when I read recently about a picture book called Tommy at the Farm: The Little Pig about a boy who just happens not to be able to walk, and who travels about on a tractor-cum-wheelchair to find his nan’s glasses, I just had to buy it for Boo.

 

 

The book is inspired by Thomas, a little boy who lives in Garstang, Lancashire. His story could be Boo’s. In fact it’s uncannily similar. Born a few months before Boo and prematurely like Boo, Thomas also has PVL, a form of brain damage that has led to a diagnosis of spastic quadriplegic cerebral palsy with low trunk tone. How often have I read those exact words on reports about my little boy? But Thomas, like Boo, is not a condition, he is a little boy who loves swimming, singing and reading and sounds like one very determined character. (You can read more about Thomas here.)

And now, thanks to Thomas’s Uncle Adam, he can read about a little boy like himself. Tommy’s disability is not mentioned in the book at all. This isn’t a book about disability; it’s just a very simple story in which the main character just happens to move about on wheels like all the most stylish kids do. 

The book is intended for children aged 2 and up. It’s a 15-page hardback with thick pages that are durable and easier to turn the pages of when your grasp isn’t reliable as Boo’s isn’t. There are also no staples and so no ouch moments. The words are simple and follow a reassuring pattern as Tommy goes about the farm asking each of the animals about the mysterious disappearance of nan’s specs. The pictures in the book are bright and clear, easy to see and great for getting Boo to point to. Where’s the cow? What noise does a sheep make? Boo likes it a lot and I like reading a book with him which is about a world he recognises (pigs wearing glasses aside).

Knowing that buying this book also provides funds to help Thomas continue with his treatment at the Bobath Centre in London for therapy that will help him achieve the independence he deserves makes me like it even more.

And then there’s the most unexpected delight. After reading it to Boo for the first time and telling Sissyboo the story behind the story (the story of Thomas) she did one of her disappearing acts. Thirty minutes later, she came back with two illustrated stories of her own about her ‘special brother Boo and all his CP friends’ and asked me to publish it there are then. That was several weeks ago and she is still making for and about him in her spare time and asking me to Google self-publishing at least twice a day.

Who knows if Sissyboo will ever write and publish her book. For now, please think about buying Tommy at the Farm. The book costs £8 (P&P is £2.50 and ours came in a lovely gift bag, which Boo has taken a shine to). You can find details on the book and how to purchase it here or email thefarmer@tommyatthefarm.co.uk. At the very least follow @Tommyatthefarm to find out what Tommy and Thomas are up to next. I suspect great things.

 

http://www.tommyatthefarm.co.uk/

Stop that, Boo!

Hello, is anyone out there? If there is, sorry for the radio silence. I am on holiday (3 days of our 2 weeks to go). I meant to write on the blog to tell people but ran our of time packing all the usual holiday stuff (DLA letters, syringes, etc.) But I am missing the blog and you lovely readers, so here’s a post from this time last year and a reminder to me that though we are still moving in inchstones, Boo has come so far. Watch this space when I get back to find out how!

Premmeditations

I love quiet. I like to work in complete silence, or with classical music on very quietly on the radio in the background. I relish the sound of silence. Peace. Quiet.

And of course, with two young kids, I rarely experience it. But I’ve come to love the noisy hustle and bustle of our house: the music, the machines whirring constantly to clean up the debris of our lives, Sissyboo’s singing, the tears and the tantrums (sometimes from the kids), the negotiating for treats (ditto). It’s familiar. It’s comforting. It’s home.

But yesterday it struck me that another sound had entered our house and was competing for airspace. ‘Stop that, Boo!’ has become, without me even really noticing it, a recurring refrain of our day-to-day. It started out with repeated requests for Boo to stop pulling my hair or Sissyboo’s. He still does that. A lot. But just recently I…

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