Tag Archives: conductive education

Sitting Pretty

OK, so this post came with a teaser trailer. OK. A teaser spoiler. You see, I couldn’t sit on the news. I couldn’t help but tweet my joy and relief at the weekend. Like always I did it with a sense of nervousness.

Whenever Boo does something to suggest a milestone will be met or has been met, I worry that telling people will jinx it. It’s not that I’m a superstitious person. I’m not at all. It’s not that I’m a pessimist. I’m not. It’s just when you’ve played the two steps forward, one step back game for long enough you become a pragmatist. Too many things come and go with a growth spurt, or onset of illness, or the turning of calendar pages. But I think this one is sticking. And I am so, so happy.

So, here it is:

Boo sat for 5 minutes. Unaided. 5 minutes. 300 seconds. It felt like hours in my mind.

And it was the reflection of not just hours, but days, weeks, months and now years of hard work and grinning through tears of frustration. Hours of physio at home and nursery every day. Sitting him between by crossed legs, sitting him on my legs. Sitting him straddled on a physio roll and on a box. Sitting him on a Swiss ball and, when that burst, his sister’s space hopper. It’s the result of hours and hours of conductive education and the love and support of his teachers, who don’t see limits in our children, just potential. It’s also, undoubtedly the work of the Lycra suit he now has, which gives his brain enough sensory feedback to make his floppy trunk muscles realise that have a job to do and iron out the c-shape in his spine.

As I sat playing with Boo last Sunday he was on his lime green yoga mat (non-slippy and cushioning for bumps) as usual, I had an array of toys in front and to the side of him to choose to play with: his drums, his bubblegum machine, his V-tech bus. I was actually focused on his SALT therapy at the time. (Yeah, cerebral palsy has robbed me of the opportunity just to play with my son. There’s always an end in view.) So I was getting him to choose toys by eye-pointing and grabbing and making a ‘yeah’ or a ‘no’ (which he can’t yet say but is trying to). I was talking about colours and seeing if he recognised them.

I looked at my watch, to see how much time we had before his sister came back from her swimming lesson and when to put the jacket potatoes in the oven for their tea. 15:05. OK, plenty of time.

Bubble gumballs cascaded down the machine and I tipped it up so Boo could try (it’s very hard for him, but he is just about doing it now) to lift the balls up and put them back in. He was doing so well with this, we kept going. Then he wanted to play with the bus and I made him choose letters (from the ones he can say: ‘m’, ‘a’, ‘d’) and played the songs. I sang them and he joined in with odd sounds. It was fun. And then I got out the drum and realised one of the instruments off its side had fallen off. It was near me, but I had to move about half a metre away from Boo to get it. Without thinking, I did it.

He was still sitting. Diamond legged (to eliminate his hamstring tone), propping with one arm. Then he swapped to prop with the other. He was still sitting. I looked at my watch 3:10. I shrieked. He wobbled. I caught him.

He had been sitting for 5 minutes. Tears welled up. If it hadn’t taken me so much by surprise, if I wasn’t so nervous about not being near him to catch him when he falls, I’d have a picture to show you. Maybe soon.

There have been days (many days) where I worried this day would never come. People had told me not to expect that Boo would ever be able to sit independently. And no one can predict what this means in the long term.

But we’ll take this and shout out loudly and proudly about how well Boo’s done.

No limits, Boo. Sometimes, I think there is nothing you aren’t capable of.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Good News Friday #42: The First Straw

Well, we’ve nearly done it. We’ve got through the first week of our new routine with my two long commutes and a different work pattern. It hasn’t been especially easy, at times, not least because nursery called on Wednesday (when I was 65 miles away) to say Boo needed to go home as he had been vomiting. There was nothing wrong with him. His anti-seizure medicine makes him a bit nauseous and if he eats too close to having it (they gave him a second breakfast without telling me they were going to do that), he spits up. They still excluded him for 2 days even though there is nothing wrong with him and dealing with that has been difficult. But we coped and having had a rough start means we know that we can deal with things when they don’t go to plan, which is good news, in a perverse kind of way, I guess.

But I won’t say it’s been great. Bearable mostly. But very good in places, and there have been some very, very good Boo moments that I just have to share and which have made it all so much better.

1) New sounds: We have ‘Wuhs’ and ‘Bs’ here now. And most people seem to be called ‘Bob’ (which makes a change from ‘Dad’). (‘Bob’, by the way, is not as random as it sounds. It’s a version of one of his good friends’ names at nursery). We also have had a lot of in-context ‘yeahs’ this week and Boo even showed them off to his developmental consultant on Wednesday, which proves that sometimes, at least, he is happy to play the part of performing seal.

2) Appointments part I: Our first physio appointment for a month wasn’t great. I had hoped Boo would show his physio (one of his favourite people – and mine, I might add) some new tricks. No deal. He just sobbed uncharacteristically. We had no idea what was wrong with him, except that his OT was there too. He likes his OT, so it wasn’t anything personal, but he is a stickler for routine and context and I think, in his head, she wasn’t supposed to be there and he was confused. And then she pulled bandages around his middle in an attempt to see if they improved his trunk tone. It didn’t make her any more popular with him, that’s for sure, but it did improve his trunk control and with it his arm function in quite startling ways. So we have been referred for orthotics with a view to getting Lycra garments. The funding needs to be approved first and then we go on the waiting list, but this is a very positive step, I think, for Boo.

3) Appointments part 2: Our other appointments this week (Portage and the consultant appointment) went much better. We hadn’t seen the consultant for 9 months (she’s three months behind on 6 month reviews). She is lovely. She has this wonderful knack of accentuating the positive and was full of praise for all the things Boo could do. These are some of the only appointments we have when I walk through the door and feel happier than when I’m standing outside it. And I think it the good vibes rubbed off on Boo. The appointment was at the most rotten time of the day (tea time) and he went in 30 minutes late. He was starving and grouchy. He had been sent home from nursery and (like us) couldn’t really understand why as he was perfectly well. But once he was in the consulting room, he showed off right royally, as if to repay the faith the consultant had put in him in her positive take on reading through his biblical sized file before seeing us. I was so proud.

4) The first straw: And then we went to conductive education, which Boo loves. He had a great time as usual and participated in all the activities enthusiastically, watching his older classmates show off their new sitting and crawling tricks. Boo’s not there with either of those particular skills yet, but he doesn’t like to be outdone. So at his favourite times of the session (snack and lunch time) he decided to show what he’s made of.

He’d worked hard and he was thirsty by the time juice and biscuits came out. For once, I had remembered to take with me the therapy bottle his speech and language therapist had suggested we try him with to encourage lip closure and tongue retraction (although the latter isn’t really a problem for him). I must confess, I don’t use it at every meal and haven’t got one yet for nursery. You see, the bottle has a straw in it, and learning to use a straw is tough if you’re Boo. It’s a non-collapsible straw, which helps, but it’s also not fixed in the bottle, and Boo learned in about 30 seconds that the best game in the world is not using the bottle to drink out of, but to pull the straw up to irritate Mummy.

But we keep trying. A little and often, as is our way. But I was beginning to give up after 3 months of trying. I was using it at fewer meals, keen to get fluids in him and prevent constipation. But I said last week that I would take it to conductive education this week, so I did.

Boo walked over his seat (with a ladder back chair and arm splints and a bit of help, but you know, still, he walked) and sat down. He enthusiastically chose grape juice when offered that or water by his teacher. And then we sat down to drink. I held the bottle and was in the process of asking if we could have cup of juice made up too so he could get enough liquid inside him to hydrate him for the next set of activities when the usual 3 seconds of unenthusiastic straw sucking ceased.

And then I started talking to Boo and one of the other children before absent-mindedly saying ‘Gosh, Boo, you are a thirsty boy today, you’re wolfing that down’. What had I just said? I paused and did a double take. The liquid level had gone down an inch. An inch! And not down his front. He was sucking effectively through a straw. And it wasn’t a fluke. He did it again at lunchtime and tea time. He has learned to use a straw.

And once again, I realise that for all my research and my efforts as an amateur therapist, it’s Boo who does most of the teaching around here. It was as if he were saying don’t give up. Keep plugging away. Things will happen if you just keep trying. Noted, Boo. Noted.

OK, so those are our highlights from this week. I hope your weeks have been filled with good news. Do feel free to let me know what nice things have been happening in your worlds in the comments below. We love to hear from you!

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Sealed with a Kiss!

We had to cancel our first SALT (or speech and language) appointment this year because of Boo being ill. He also missed a joint OT/physio appointment. I minded about missing the joint appointment lots, partly because we have been waiting so many months for it. I missed SALT, well … not so much. You’ll know if you read the blog regularly that I find speech and language sessions depressing. I worry Boo has been written off a bit in the speech stakes, despite being young (still not quite 19 months corrected) and making lots of noise/sounds odd words.

Most of Boo’s appointments begin with the dreaded question: ‘So what’s new with Boo?’ Usually I scramble to find a more optimistic sounding way of saying, ‘Um, not much, but I think he’s doing what he could do before a bit better’. But I actually did have something to report for SALT. A small thing, but a big deal. And something pretty special to me. As I couldn’t tell his therapist, I’ll tell you guys instead. Honestly, I think you might even appreciate it more, too.

Drum roll, please: Boo can blow kisses!

Lip closure is something we’ve been working on for some time. And it’s been an odd one for me. You see, I hadn’t really thought it was a big issue for Boo before he started conductive education back in September. You see Boo can close his mouth. He has never had an issue with feeding/eating (for which we are all enormously grateful) and munches away with his mouth closed. But he does dribble a bit when he drinks out of anything other than a bottle and when he’s excited, which is most of the time, he has a big, wide smiley grin on his face. He couldn’t/wouldn’t close his mouth on demand to copy others. In the warm-up at his conductive education sessions Boo and his pals are asked to do some breathing exercises and make ‘ah’ (big, wide smiley face) and then ‘mmmmm’ (lips closed) faces and sounds. Boo just giggles. It is funny. But was he laughing because he saw how daft everyone looks and sounds or because he couldn’t do anything else, I wondered? Probably, I sadly realised after several sessions where he was asked to pop bubbles with closed lips (of course he just tried to eat them), the latter.

Our speech and language therapist also wanted us to work on lip closure which is so vital for feeding and speech. We were advised to start trying to get him to drink through a special cup with a straw and have started to have some small success with this, in that he’ll take a few slurps before biting the straw and triumphantly pulling it up out of the cup with his teeth. But that’s it. So what can we do but persist, like we always do? I started introducing bubbles at bath time and trying to get him to pop them with closed lips, like at conductive education. The result: plenty of giggles, but no lip closure on demand.

Until very recently, that is.

All of a sudden, Boo has started to blow kisses when we blow them to him. It is frankly the most adorable thing I have ever seen and he is mightily chuffed with himself. And in the last couple of days we get them without demonstrating. If you ask Boo for a kiss without demonstrating what you mean he obliges by blowing one right back at you.

When Sissyboo started doing this, I thought it was cute too, of course. But I had no appreciation of the skills that go into making something apparently so simple happen. Boo has had to learn to copy others, to work against involuntary tone and muscle movement to close and open his mouth when he sees fit. And then he has had to learn that the word for that lip movement is ‘kiss’ and if Mummy, Daddy or Sissyboo ask for one and he makes the right mouth shape we’ll clap and grin like buffoons even more than usual.

And this is just the start, potentially. This might be the route to less messy drinking and to new sounds. Maybe one day I won’t just get a kiss, maybe one day I’ll hear the word ‘Mummy’ or ‘I love you’. I won’t take them for granted. That’s for sure.

I love you too, Boo.

Because I am especially happy about this, I am linking this post up to two of my favourite linkys: Magic Moments and Motivational Monday in part as a thank you to two ladies whose blogs help keep me going when things don’t feel quite so magic or motivational.

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Good News Friday #40

Like most of you, it’s been back to reality for us this week. A return to school, to work, to nursery. Oh, and because we’re the Boos, appointments, illnesses, out of hours doctors and all that jazz. Monday was supposed to be the most depressing day of the year (and to be frank, if you read my post on Monday, you’ll know that ours wasn’t great), but the week has got better and better as it’s gone on and I am quietly optimistic about what lies ahead. 

So here goes. Our good news…

Boo got better! Thanks to The Grumposaur’s Dad arriving with an unexpected gift on Christmas Day (a stinking cold and chest infection), Boo spent from January 1 until Monday pretty sick. His fever came and went for the first few days, but by the early hours of Sunday was up to 40 almost constantly. His breathing was shallow and rapid. I was worried to put it midlly. We had quite a saga trying to see an our of hours doctor, but eventually got antibiotics and he’s doing so much better now.

I’ve written about this before, but when any child gets sick (especially when they can’t communicate what’s wrong with them), it’s awful. Sissyboo’s major illnesses always knocked me for six. But with Boo, or with any premmie, or any child with complex health needs, it can be devastating. You end up trying to fight not just the big that they have, but have to wrestle physiologically and emotionally with the underlying problems that make them so vulnerable to things that would make you and I feel a bit out of sorts for a few days. You confront you fears of the past the present and the future. And it’s blooming exhausting. Thank goodness we made it without hospitalization this time.

We got some sleep. OK, this is a story of two halves, or 5/7ths and 2/7ths to be precise, but still, glass 2/7ths full and all that. Boo’s sleep problems have been awful for months (most of the time since birth, actually). Worse still, they have deteriorated rapidly since November. Settling him is a battle that can take hours only for him to wake 50 minutes later. He has started to bite, pinch and pull our and his hair before sleep too, behaviours we never see at other times. If he naps on us in the day, or on his tummy and a sleep mat at nursery, he sleeps well. I’ve been trying to work out what the problem is. I’ve (almost) set aside the partly irrational fear that his epilepsy is returning and come to the conclusion that there are some sensory issues at play here (about needing sensory feedback to comfort himself) but also that he needs pressure and a good deal of support to fall asleep. Sadly, I can’t let him sleep on his tummy at night. They can do this at nursery because he is constantly watched, of course. He can head turn, and can roll front to back but not reliably enough for me to think that if he got into trouble, he could get out of it.

The effects on us all have been, frankly devastating. The exhaustion is awful. The frayed tempers worse. And this week, it was clear that it was starting to affect Sissyboo, too. And there I draw the line. I wrote to her teacher to explain that she might be tired at school but vowed that I was trying to get help. I am trying. Hard.

So I want to say a big thanks to all those tweeps and especially the many lovely people who commented on or messaged me through the blog’s Facebook page with advice, anecdotes, tips and solidarity. Thanks also to a lovely friend I happened to meet for an all-too-brief coffee for the common sense she imparted. We have introduced some new things. I have set up an elaborate home-made sleep system involved supports under his sheet to bolster that given by his v-pillow. I have bought a white-noise machine, which we clearly need to leave on all night. I have contacted Cerebra, who run a sleep service that has clearly helped so many and I am about to receive some info from them that will allow them to assign us a sleep practitioner. And, of course, I will speak to Boo’s consultant about this when I see her in 10 days. 

But touch wood (and with crossed fingers in case I jinx this) the last two nights have been better. Much better. And the effects all round (on Boo on us) are terrific. This is going to be a long battle for us, I suspect, and like many of the ones we fight, the goalposts will probably change a lot, but I feel positive that we are doing things about it and that doing things is making a difference. 

Exercise. I have entered a half marathon in September. This will be my second in only my second year of running. Well, I say second year… I haven’t run regularly for many months and regular running really stopped last March after I got an injury. I had intended to start building back up to regular running this week, but things have been too hectic with Boo’s illness and a scrambling to catch up at work with time lost to his illness that it hasn’t happened. But I have done some school/nursery drop-offs on foot (a round trip of 1.5 miles) and even doing something so small-scale has helped me to clear my head and make me feel a bit better about life. I have written run in my diary for today and Sunday. It might just happen, fingers crossed…

Conductive Education. Sadly, I had to work this week on the day I normally take Boo to conductive ed, but The Grumposaur took him. I want to write more on the blog next week about what Boo’s being doing in conductive ed lately and how it’s helping him, but for now, I thought you might like to see some of the fruits of his labour in the form of this little snowman masterpiece.

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One of the things I love about conductive education is that it doesn’t base activities around what it thinks children with cerebral palsy can do (knowing that many mainstream activities can extremely challenging for many of them). Instead, it asks how we can enable children to access all the activities that we would expect kids their age to do.

And that’s what I want for Boo. A life where we provide him with strategies (however unconventional) so that nothing he wants to engage in is in off-limits. Surely that’s the kind of life we all should lead…

Anyway, that’s my edited highlights of the week. I’d love to hear your good news in the comments section or on the Facebook page. I love to hear from you!

 

Bubble, bubble, bubble, pop

Boo has been attending a conductive education nursery one morning a week for two months now. Conductive education is one of a gazillion (take it from me: I’ve counted) on the list of words I didn’t know before I had my little boy. And it’s a phrase that generates interest every time I mention it to friends, on Twitter or the blog. What is it? Does it work?

Those are big questions and not easy to answer briefly, but I will attempt to do so soon in a dedicated post. You can read a little more about its principles here. For now, all you need to know is that conductive education is a highly structured routine and group based set of learning activities that are designed to encourage the cognitive and physical development of children with neurological and motor difficulties, especially (but by no means exclusively) cerebral palsy. The long-term aim is to enable children to live as independently as possible and all physical and cognitive tasks practised each session are designed to promote that, whether it’s taking your shoes and socks off, feeding yourself, brushing your hair, or getting down from the dinner table. Conductive education settings are often called Schools for Parents. The reason for that is that we have much more to learn than the kids. And we work with our own children, one-to-one, with the help of the teachers.

Boo LOVES conductive education. He is sociable, and really likes all of the other 5 children in his class. (So do I. They are all amazing, funny, sweet and tenacious little people.) He also adores the teachers and would spend every minute of every session cooing, smiling and otherwise flirting with them (a good way of making sure he gets the second helpings of lunch and pudding he always manages to get) if we let him. But make no mistake. Conductive education is really hard work for him and for us. Brutally hard work, sometimes. For three hours a week, every wrist or head angle, leg or back position is monitored and corrected. There is no giving up.

Boo has got used to the routine of conductive education (the same activities – with variants – come in the same order each week) and anticipates the next one now. Among his favourite tasks are the anticipation games that are played. So at different points in the session the children have to be still in any given position (they do it in lying, on their tummy and sitting), hold that position (not easy) and then listen for a ‘ready, steady’ and then anticipate whatever exciting (often movement, light and sound involved) action is going to follow, and which they then have to track. But this doesn’t happen until someone (one of the children) makes a sound, whether it’s a fully sounded ‘go’ or other excited noise. This is physio, occupational therapy and speech and language all at once.

Two weeks ago we were getting ready to do this and Boo was sat on a low box with his legs at 90 degrees. He had a ladder chair in front of him so he could hold onto the rungs to keep upright (he can’t sit independently) and I had my fingers lightly on his pelvis to stop him from tilting/falling. While he was waiting for the ready, steady, go he was making some very odd noises. To be honest, I thought he was filling his nappy, but I couldn’t see his face as I was behind him. But the noises got louder…

I was just about to check when I felt a force pushing my fingers away from him. Boo had stood up. He had pulled to stand using the ladder chair and was giggling as if the most hilarious thing in the world had just happened. Everyone stopped. Now normally, conductive education is quite strict. If you are doing a sitting activity, you sit, you don’t stand. But no one told him to get back down.

We were all amazed. He had pulled to stand. I never thought he would be able to do this.

OK, he was wibbly wobbly in his trunk. But he was standing tall and proud and he was so pleased with himself. No one was going to rain on his parade and tell him to get back down.

I came home excitedly and told the Grumposaur, who was about as shocked as me. But in Boo Land, while we take every bit of progress and celebrate it we are also cautious. It doesn’t pay to get too excited here, as pride often comes before a fall. So we took the good, but told ourselves it might just have been a one off.

Except it wasn’t.

The next week the children were being encouraged to sit still by watching bubbles. Boo would do anything for bubbles. But if you ask him to pop them with his arms or lips, well… nothing doing. But it did encourage him to sit nicely on his box with the ladder chair in front. Until the bubbles stopped.

It happened again. He pulled up to stand and started roaring like a lion cub with excitement. Then he sat down and did it all over again just to show us it wasn’t a fluke. He got lots of bubbles as a reward. Boy he deserved them. I couldn’t believe it.

And then just as I thought there was no breath left in my lungs I was forced to expel the very last bit. Over-excited by the sea of bubbles around his head. He let go of the ladder chair that was holding him up with one hand and reached up to pop the bubbles.

Tears of disbelief and joy welled up. I still can’t believe he did it. Talk about trying to run before you can walk (or stand before you can sit in Boo’s case).

Moments like these are priceless. When you have been trying to teach your son to roll back to front daily for about 16 months, trying to get him to sit for over 12 your will gets ground down no matter determined you are. But Boo’s doesn’t. He never gives up and I will never give up on him doing anything so long as he is willing and able to try it.

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World Cerebral Palsy Day 2013

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 the messages in the hectic activity of their own lives. I am as guilty of this as anyone else.

World Cerebral Palsy Day is different. It isn’t just an awareness day; it’s an activism day and in just about the most imaginative way possible. People with CP, their friends and families or an budding inventors with a mind to improve the lives of others are invited to come up with an idea that would change the lives of people with this neurological condition in material ways. Oh and they have to communicate this in a 1-minute video or text. Dragons Den contestants eat your hearts out.

I love the creative, proactive and positive attitude towards cerebral palsy this campaign encourages almost as much as I lament my own inability to be as inventive and creative as any of the entrants. And I wish I knew what I could do to make life for Boo and children like him easier. Of course, the answer is that I am still working things out.

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

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

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

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

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

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

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

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

4) There are several different types of cerebral palsy:

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

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

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

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

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

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

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

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

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

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

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