Tag Archives: milestones

The Word You Long to Hear

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Anyone who reads this blog regularly will know that SALT has left a bit of a bitter taste in our mouth at times. Boo was first referred for Speech and Language Therapy in January 2013 aged only 9 months. That’s rather early, you might think, but the consultant knew only too well how long the waiting lists were. And then there were the brain scans. It was almost inconceivable looking at all the little black dots where there should be white matter on Boo’s CT images that he wouldn’t have speech problems and early intervention, as in all things, promises the best outcomes.

But nothing is straightforward is it? First of all, we got put on the wrong waiting list in error. When I received a letter saying I would be given a parenting class – as clearly I didn’t know what I was doing – to teach my child how to speak at some point in the next 12 months (but not until then as his age meant he wasn’t a priority) I sobbed for 30 minutes before phoning the consultant who realised we’d been put on the wrong list and got us put on the right one.

And then in late September 2013 we met his speech therapist. She is lovely. But it has taken her a while to get to know Boo and us. Many of the things she asked him to do involved complex physical skills, such as sitting on the floor and picking up and posting objects – ‘He has quadripledgic CP and has limited voluntary arm movement’, I screamed internally – and they used up all his concentration. For the first 3 meetings, he barely said a thing. He was working too hard in the wrong ways.

The upshot of all this was that I felt that she, along with the consultant who can’t be named and we only have to see once more (thank God) before being discharged from his prematurity clinic, had written Boo off in the speaking stakes. All of the nameless consultant’s grimmest pronouncements, that Boo wouldn’t be able to do ‘much at all in life’, that he would be ‘immobile’ and non-verbal rang around my head. I dreaded SALT appointments.

But we did our homework anyway, because we’re good like that (and I like to prove people wrong). I even bought a laminator and registered for the TES website, where I have found lots of helpful resources like flashcards and so forth. I have coloured in phonics cards in the middle of the night. I have made exaggerated facial movements and animal sounds in the mirror until my face hurt. I have learned bits of makaton, despite knowing Boo is unlikely to be able to move his arms with sufficient dexterity to sign back at me.

At times, I have been so sad about it all. So sad that I might never be able to have a conventional conversation with my son. I wrote a post about it at my lowest point, and was really buoyed by the kindness and wisdom of blog readers, who reminded me that there is more than one way to communicate. And I knew this, of course. I never feel like I don’t know what Boo wants or needs. He tells me in various ways and his sister, his dad and I know how to read those signs.

But there were the noises, too. I just found it difficult to believe that Boo wouldn’t ever speak at all, although I am quite prepared to believe that speech won’t come easily to him and that his speech will probably never be entirely distinct. You see, he has always vocalised. A lot. He has an impressive range of sounds – m, n, oof, an, ug, ag, w, y, I could go on and on… And he has had some words for some time: ‘dad’, ‘hiya’, ‘yeah’ and a version of his sister’s name for starters.

I found it so frustrating that people weren’t hearing me when I said that he could speak, if only a bit and with difficulty. But as the months have gone on, we have all (including me) come to understand a lot more about Boo and what he can and what he struggles to do. He learned to use a straw in a matter of weeks (this has helped enormously with his speech development). He has been given endless flashcards to look at and had to prove he can find named objects from a choice of 2. (Where’s the ball when showing a card with a ball and a card with a doll on, for instance.) When he had that down pat (which he did very quickly) we moved to asking him to make choices from 3 or 4 objects (find the ball while also showing him a doll, a teddy and drum) and we introduced a simple communication board with 4 activities on so he had to choose what he wanted to do next by looking and pointing at the appropriate symbol and confirming with his now totally reliable ‘yeah’ that that’s what he wanted to do. He proved through all this that he could understand symbols and language at the abstract level. Then we moved onto line drawings of verbs. He has 30 he can identify and find when presented with a choice of three.

All of this proves what I have always known. He understands us. And more than that, he seems cognitively age appropriate. His speech delay, it’s pretty clear now, is an oral motor issue. Placing his tongue and his mouth is as hard for Boo as getting his arms and hands to do what he wants them to when his intractable brain is not co-operating.

And in that realisation I see hope. Boo’s arm and hand placement is still not reliable, but at the age of 2 it is much better than some people ever thought it would be. This is the little boy who once couldn’t lift his arms or unclench his fists at all. Daily physio for 24 months and he can. If he can get over those hurdles to have more control over his limbs, we must be able to do something similar with his speech.

Now having the confidence of his speech therapist and aided by my new enthusiasm for laminating things, we have done a lot of speech therapy in the last few weeks. Since our last appointment, we have been working on 6 phonics cards (he recognises them all) and can say ‘a’, ‘m’, ‘b’ and ‘d’ now. (‘F’ and ‘g’ are harder although he can say them in the words ‘woof’ and ‘egg’). He can also recognise about 95 per cent reliably the colours blue, red, yellow and green (on flashcards or in matching games) and he tries to say ‘red’ and ‘yellow’ when prompted. He has just acquired the word ‘more’, which we have been working on for months. At his speech appointment yesterday, his therapist was impressed by all his hard work.

I left on a bit of a high. It was working. I was helping him. And we got the paperwork to refer Boo for a service that will assess him for a communication device, which I think he will respond to very well.

But little did I know what was to come…Later that day, I got the best surprise ever.

Because for all I love hearing him say ‘hiya’ and his cute ‘yeahs’ or, very recently ‘o’ for ‘no’, there is a word that I have secretly wanted Boo to say more than anything. I didn’t mind that Boo could say ‘dad’ at 18 months. Kids always do say ‘dad’ first, in my experience. I loved the fact he had a version of his sister’s complicated name early on. I didn’t mind he couldn’t say ‘Mum’ and told myself it didn’t matter if he never said it. It’s just a word. I know he knows how to get my attention. I know he loves me.

But it didn’t stop the tears welling up later that day when we were sat down reading stories. I felt Boo’s body tense a little (a sure sign he is trying to achieve some movement that doesn’t come naturally). I wondered what was about to happen. Filling a nappy, maybe? No it wasn’t. For the first time I heard ‘Muuuuum’.

I felt a shiver. ‘Pardon, baby’ I said hopefully, telling myself not to get too excited. ‘Muuuuuuum’ he said. ‘Did you say, Mum, Boo?’ I said. ‘Yeah,’ he replied. And then a tear fell down my cheek and Boo got a fit of the giggles and tried to give himself a round of applause. And then he made like a tap you couldn’t turn off. ‘Mum’, ‘Mum’, ‘Mum’, ‘Mum’.

It is so hard to explain to you all how much this means. All that hard work he’s done. All the time I’ve spent trying to help him. The way he’s flipped the metaphorical ‘v’ again to the consultant who said not to expect him to make any sounds at all or to even respond to us. And you know what? Boo knew what it meant. His smile, his giggles showed that.

Those three little letters spoke volumes about Boo. About his determination, his potential and how much he loves and is loved by us all. Mum is not just a word. It’s another bloody miracle.

(Oh and yes: I look exactly like the woman in the card below.)

 

 

 

 

 

 

 

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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I sit ready

[Sung to the tune of ‘I hear Thunder’] ‘I sit read-y. I sit read-y. Look at meeee. Look at meeee. I am sitting read-y. I am sitting read-y. Look at meeee. Look. At. Meeee.’

This is one of several songs that play in my head on a loop at the moment. It’s one of the rhymes we sing in Boo’s weekly conductive education classes. I must confess it’s not my favourite. I actually quite like the one about standing like a Jack in the Box and not sneezing. (You think I’ve gone mad, don’t you, but this is the strange world I inhabit these days.)

These songs have become very important to Boo. They are ways of linking cognitive responses to physical actions. So the Jack in the Box song is a standing song. It acts as a verbal cue (he hears it and knows to stand) but it’s also a form of distraction that encourages Boo and his classmates to concentrate on and be entertained by the song while holding a physical pose that doesn’t come naturally or moving in a particular way. Boo stands for a lot longer if you sing the Jack in the Box song than if you don’t. It’s that simple yet effective.

But he’s not much of a fan of the sitting ready song, either. Why? Well, because it’s the conductive education equivalent of the song ‘Why Are we Waiting?’ It’s the an exciting toy will come your way soon or bubbles, or better still a biscuit or lunch, but not yet song. No you’ll only get the toy, or bubbles or food if you are sat properly, feet flat on a plinth, upright on a regular wooden chair, with your head in the midline and holding rings or a bar with one hand to aid your balance.

Waiting is hard enough when you’re a kid. Deferring gratification is not a skill that’s easy to acquire. To be frank, I know many adults who still haven’t learned that particular life lesson. But when you have to learn to hold off on what you’re waiting for with optimum posture while your brain is sending you wappy signals, well … this a truly Herculean endeavour. Imagine you trying to rub your tummy and pat your head. Upside down. In water. Yes. It’s something like that for kids like Boo.

I think I know how he feels. The waiting game, I’ve found, is an endurance sport and one of the hardest aspects of our new life since having Boo. Don’t get me wrong. I could wait for years for him to sit, crawl or walk if I knew he would be able to some or all of those things at some point. But we don’t know whether or not they will happen. We will only know when they happen. or if they don’t.

I’m not good at being patient. I want to make things happen and I work so damned hard to try to make things happen. But I know that for all our collective efforts we only have so much control over Boo’s future. And I hate that. I really hate that.

But as I was sat next to Boo in conductive education today (with a very hungry tummy after more than 2 hours of really hard work sat waiting for his dinner, sitting in a position that was forcing him to go to war with his own brain) that in this, as in so many things, I have much to learn from my little boy.

He wasn’t comfortable. He would have much preferred to have grabbed his food off the lunch trolley than sit there as still as he could to the ‘I Sit Ready Song’. But he did just that. Because he has learned that he would get what he wanted. Eventually. If he was patient. If he did the right things. Things that just a few weeks ago he couldn’t do at all. Like twisting his wrist against the dystonic impulses he has to grip a pole to keep his balance. Like sitting with feet flat on a box. Like sitting on a wooden chair with no lateral or trunk support. Things I never thought he would be able to do.

And from his point of view it was worth clearly it. The struggle. The wait.

Sure he didn’t know quite what he was going to get at the end of the wait (today it was sweet and sour veg, and I think he was secretly hoping for macaroni cheese – he always wants macaroni cheese) but, you know what? It was fine. The veg got hoovered up all the same. And he left the session full and happy.

I’m not one for sentimental metaphors. Someone quoted Forrest Gump to me after Boo’s birth and when they told me that ‘life was like a box of chocolates’ I did secretly want to give them a brisk kick in the shins. Nevertheless, Boo’s life and how he approaches it has totally changed the way in which I see and navigate my own. And like him, I promise to be both patient and tenacious in the hopes it brings us what we want and he deserves.

So maybe it’s not such a bad song after all. OK, Boo. We’re in this together and if you can do it, so can I: I sit ready. I sit ready. Look at me. Look at me. I am sitting ready. I am sitting ready. Look at me. Look. At. Me.

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It Takes Two

It’s been a bit intense here for the past week or so, so I’m thrilled that Small Steps Amazing Achievements has come along to knock some sense into me and remind me how good things can be.

One of the loveliest things about Boo is how friendly and sociable he is. These things get commented on frequently, especially by healthcare professionals. They read about Boo’s catalogue of medical problems before meeting him and assume certain things about him: that he won’t be able to engage with the world around him; that he won’t be sociable; that he won’t vocalise or have words; that he will be angry and frustrated. None of these things is true. He smiled from 2 weeks of age (corrected), has always had good eye contact and loves people, who he interacts with though noises, facial expressions and mimicry.

I don’t take any of this for granted. We are incredibly lucky that he does all of these things, that his brain damage doesn’t seem to have affected his sociability.

But for all his love of being around lots of people, Boo necessarily spends a lot of time one-to-one with a solitary grown-up. It’s how he learns. In order to maximise his physical potential, he has a least 1 1/2 hours a day with one adult doing physio, or attempting to self-feed, or practising fine motor skills (a real challenge for him). This is one of the many reasons that when we were deciding on childcare for Boo when I went back to work we came to the conclusion that we wanted him to go to nursery. He needed and deserved to be around kids his age, we thought. He gets precious little of this normality in his life.

But of course, the minute you put Boo with other kids his age or (in fact, as things are in his nursery) younger kids, his difference sticks out like a sore thumb. He can’t crawl with them or chase them if they run off with his toy. He even has to have his own box of toys, mostly plastic, easy to hold, flashy noisy toys that he gets good sensory feedback from, in a nursery where all other toys are, as a matter of policy, natural (wood, metal and cloth). The other kids covet his contraband toys. They love the gaudy, flashy, lighty toys they can’t have. And they are mesmerized by his glasses too. They long to play catch with them…

Some days, on not so good days, I worry that putting Boo in a group with lots of healthy, neurotypical kids, just teaches him he’s not like them. But then I started to notice some small changes that make me feel we made the right decision.

Boo has started to play with the other kids.

It started when I went to pick him up one day and Boo was tapping on a saucepan with a xylophone stick. Aww, I thought. The awws turned to ahas, however, when I noticed he wasn’t just doing this on his own and randomly. He was copying a little boy (the youngest sibling of one of Sissyboo’s friends) who was beating the living daylights out of a wok on the other side of the room. N smashed his wok. Boo responded by tapping his saucepan. They were both giggling as each took their turn. If I didn’t know better I would say they were developing their own brand of baby morse code, like prisoners of war in solitary confinement. ‘Let’s escape the nursery… Let’s persuade Hermoine to be sick so the girls run to help her and we’ll shimmy out the window.’

And then the other day The Grumposaur went to collect Boo and he saw him passing a toy to another boy who passed it back again and so on. Letting go of things is very hard for Boo. Getting them is such an achievement, and then his brisk reflexes kick in and releasing his grip is hard. We have been working on it, periodically (along with the 1001 other things we are supposed to work on every day) and he is getting better. But to do this passing game with another child is a huge step forwards.

You see the basis of most interpersonal relationships for Boo is like this. Someone puts him in a particular position and expects his to do something. Grab something, move in a particular way, make a particular sound. And then he does it or tries to do it and then he gets inane smiling from accompanying adult, lots of praise and a round of applause. Seriously, he looks for applause after he does most things. (Life is going to be such a disappointment for Boo…) And of course kids don’t clap and aren’t easily impressed. They snatch, they cry or pull faces most of the times. These are far less enticing and rewarding interactions for Boo. But he loves other kids, just as he loves grown-ups. He wants to interact with them too, even if they aren’t going to give him a standing ovation for playing with a pop-up toy.

It’s not like he’s taken up chess or anything, but these small glimpses into a world of play with other kids his own age are priceless. And I hope there are many more to come.

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Good News Friday #21

Where did that week go? September is back and time has sped up. Again. It’s quite alarming. But it’s been a really good week and not as difficult to see the wood for the trees as it sometimes is. So here’s the woody good news from Boo Land this week.

 
1) Back to school. Now don’t get me wrong. I miss having Sissyboo around. I have enjoyed the summer holidays, despite having to work through much of it. But she was ready to go back. She wanted to go back. Despite being a parent who has never imposed a particular routine (except around meal times and bed time) on my kids, they both want and need them. Sissyboo was ready for bells telling her the time and certain activities at certain times of the day. She was really excited about being a big girl in year 1 (where did the time go?). 
 
Me? Well I didn’t bother to think if I was emotionally ready for the new year because I was too bloomin busy reading the 1000 emails from school about which days were PE days, when show and tell was, how to select an appropriate toy for this term’s learning project, learning targets … Oh and the labels. The bloody labels that I carefully unpicked from last year’s uniform and sewed into this. I got there eventually and we were ready. But I did get slightly misty eyed on Wednesday when I dropped her off. Her? Not so much as a backwards glance. That must be good news. She’s happy.
 
2) Boo has been assessed for the various bits he needs to fit his Breezi chair and even just with all the tightening and finessing the lovely rep, Les, did, Boo is able to sit well in it, even feeding himself sweetcorn rings. Once the chest straps in there’ll be be no stopping him! 
 
3) Conductive Education is a goer. We feel so lucky to have been offered a place for Boo at a Conductive Education centre of excellence for 3 hours a week. We visited the centre on Thursday and were really impressed by the friendliness and commitment of all the people we met and the facility itself, which is fabulous. While we talked to the head of early years, a teacher played with Boo doing the kind of learning through play activities we will be working on in the sessions. He had a ball and giggled incessantly for an hour and a half! We start in a couple of weeks. And I’m very excited!
 
4) And finally, and I know I’ve blogged about it already but I don’t very often get to do milestone boasts, so do forgive me, Boo can now roll from front to back. It’s so thrilling to see him do it, although he is now more frustrated than ever that he can’t roll back to front. Some day, Boo, some day!
 
Right: now your turn. I hope you have some good news this week, too. Do let us know via the comments box below. We LOVE to hear from you!

 

So Tired, Tired of Waiting

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Waiting. It’s become a favourite preoccupation of mine since having Boo.

We spend so much of our lives waiting. It started in the NICU. When Boo was born we had to wait and see if he could breathe independently. He did, but then he got meningitis. Then we had to wait to see if he’d survive. He did. But then there were the brain bleeds and the damage. No one could predict how they would affect him. We’d just have to wait and time would tell, the consultants told us.

And we are still playing that waiting game. Waiting to see if he’ll roll, sit, walk, talk, have learning difficulties, be able to go to mainstream school. And part of that game involves going to lots of appointments and sitting in waiting rooms. Sometimes for hours. How can a clinic be running 2 hours late when your appointment is 15 minutes after it starts? It also involves being on massive waiting lists, hoping we can access the folks we really need to see (OT, wheelchair services) before other problems set in because we’ve had to wait too long for the equipment that would help him.

And there’s also the big wait hanging over us. The wait for the postman every day, hoping he’s going to bring the letter telling us the results of the diagnostic tests Boo had over 2 months ago. The results we hope will confirm he has CP, as we expect, rather than some horrid genetic or chromosomal disorder or something life-threatening. Please, please let them come soon. Please let it be what we expect.

I’m not great at waiting. It’s not that I’m impatient, exactly. Well I mean I am and I’m not. I get very frustrated with myself when I don’t get things done or can’t get my head around something. But I’m also determined/bloody-minded enough to keep going until I’ve got a grasp of things. When I was young, I had to take a year out of school for health reasons. My appointed home tutor couldn’t speak German, the language I needed to start that year. So when I went back to school, still unwell, I had to learn 2 years of German in one, with no support from the school (or my parents, who don’t have any other languages) to pass my GCSE. I did and it was so hard I decided to continue on to A-level. Why waste all that work, I thought.

My approach to my GCSE colours my approach to our life now and the waiting game we have to play. Like I’ve said before, I’m not going to take each day as it comes; we’ll wrestle as much as we can with our situation to make out of it the best for Boo. We don’t just wait for milestones to be met ( or not). We do physio every day. I’ve sought advice on seating and carseats and sorted that myself because in my mind and his physio’s Boo can’t wait any longer for OT intervention.

I push against the tide at every opportunity. It’s hard work, to put it mildly. And sometimes I feel like I can’t push back any more. I start to crack. I sob. Then I give myself a pep talk and start all over again.

But for all my kicking back, for all the frustration and exhaustion, I do recognise a certain beauty of life in slow motion. Not the waiting for appointments or battle for intervention (I love the NHS but the waste and inequities in the system – a post for another day – make me weep, regularly). No: I mean the watching and waiting for Boo.

The other day I was talking to one of my students about Boo and she (a mother of four, grandmother of two and a PhD completing marvel) said ‘I don’t know how you cope. You are amazing.’ (I am not, by the way. I am not.) I acknowledged things were hard, but almost surprised myself by telling her how beautiful they were too. ‘But you must be so worried waiting to see what will happen,’ she said. Well, of course, I am. But it is also fascinating and amazing watching Boo grow.

‘It’s like those nature documentaries,’ I said to her. ‘You know, the ones where a flower is filmed growing from a barely perceptible seedling into a tall, fragile and proud orchid in about 30 seconds against the backdrop of a rapidly changing sky. Sissyboo, though I didn’t realise it at the time, was like the sped-up orchid, moving quickly and without hitch from skill to skill. Boo? Well he’s more like the orchid in real time. And while I want to speed the film up sometimes and see the orchid in full bloom, to know its particular shape and shading, his progress is no less beautiful. If anything it is more stunning to observe the slow unfolding of his becoming the boy and young man he will be.’

I’ll never be good at waiting, Boo. But I am patient enough to be tenacious, to help you all I can. But don’t think as I try to help push you on (‘Come on, where’s that trunk control, straighten up… Just 5 minutes more physio, Boo) that I don’t appreciate your progress.

I can’t wait to find out who’ll you’ll be. But I adore you just as you are, too.

Stop that, Boo!

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 noticed it’s happening in a increasing variety of contexts.

‘Stop that, Boo!’, I found myself saying yesterday when he was about to grab his dad’s coffee cup from out of his hand. ‘Stop that, Boo!’ when he was trying to pull the DVDs off the bookcase near the Cushi Tush he was sitting in, or trying to grab my food off my plate while sat on my lap.

I emphasise the trying, here. Reaching and grabbing are still inexact sciences for Boo as he struggles to get past the chaotic signals his brain is sending his limbs. But he usually gets at, or very near what he’s after, even if he can’t hold them well, and cups of water and pepper pots have started to fly.

And you know what? It’s bloody brilliant!

You know what it’s like. You have a child. They are adorable, but they can’t move or do much. You think, ‘Oh they’re so cute, but won’t it be great when they can move, or reach to play with my hair or talk to me’. And then they can do these things and all those people with that annoyingly knowing smile who said ‘Be careful what you wish for’ turn out to be right as chaos enters your house. All of a sudden the fate of all of your worldly possessions rests in the ham-fisted grasp of a toddler. It keeps you on your toes. ‘Remember the days they couldn’t do this,’ you say ruefully.

Not me. Not this time round.

Boo, you cause as much chaos as you like. Because I can’t tell you how glad I am that you can. I can’t tell you how much it buoys me up to gently and half-heartedly berate you for things I thought you’d be doing 12 months ago. How wonderful it is to talk to you, not just as a child who has to be carefully and specially looked after and loved, a child who has to be therapeutically handled because he’s fragile, but as a toddler-cum-Incredible Hulk.

I love this new chaos and I don’t want it to stop no matter what I say. ‘Go on’, she says, doing her best Captain America impression, ‘Boo… smash!’

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First Small (supported and awkward, but who cares?) Steps

These feet were made for walking, and that's just what they'll do

These feet were made for walking, and that’s just what they’ll do

Last night I had a variation on a recurring dream. Boo was smiling at me (he always smiles in my dreams as he invariably does in life). And then he nonchalantly clapped his hands. I cried tears of joy. I woke up with damp eyes. I have dreams like this (in which Boo runs up to me in the local park arms outstretched or, weirdest of all, Boo crawling as a 29-week 3lbs 11oz prem baby in his incubator) at least once a week. And I love these dreams (OK, not the incubator one: that freaked me out). You see these dreams give me a glimpse of a life I want for Boo. That if I see it, even if only in my sleep, I dare to believe might actually come to be. But I admit, it’s hard not to get a little down when I wake and those sleepy tears of joy turn into the quiet sobbing of regret. When I remember that he can’t do those things and, if I allow myself to be honest, that he may never be able to do some of them. Ever.

For those of you who might not know the indomitable and gorgeous Boo (you should, he’s amazing) here are some things to know. Boo probably has quadriplegic cerebral palsy after sustaining a significant bilateral brain bleed at 3 days old (he was born 11 weeks early) when he contracted meningitis. We are awaiting the test results to confirm that tentative diagnosis. He also developed a form of epilepsy (infantile spasms) at Christmas which can cause physical and cognitive regression. Although the seizures are under control they can return and the damage may already be done. At nearly 15 months (or 12 months corrected) he can’t sit independently for more than a few seconds and his trunk control is not great. He has dynamic arm tone (so the tone varies from the normal to high or spastic) which means he can’t manipulate or reach for objects with ease (although he does do both in his own energetic Boo-like fashion). He can’t crawl and likely never will. He can’t roll either.

He gets quite frustrated, as you can imagine. But he is also one heck of a determined chap. His developmental progress is glacial but every step in the right direction is huge, I tell you. Nothing comes naturally to him. So when he opens his hands, uses a pop up toy, gains arm function in sitting or rotates a bit on his side I feel pride to a degree most people (thankfully) can’t possibly imagine.

That’s why I am 120 percent behind this fabulous new fortnightly linky ‘Small Steps Amazing Achievements’ hosted by Ethan’s Escapades, and a lovely lady who knows just how I feel when these inchstones are reached. I hope to be a regular participant. (No pressure, Boo, but get with the programme, already.)

I’ve already blogged about some of Boo’s more recent achievements and wanted to write something new for today, Since Boo cooperated (thank you, young man) at his last physio appointment, I can.

It is with huge excitement that I can tell you that we’ve added a new exercise to our physio repertoire: supported stepping.

You see Boo doesn’t do things in the right order. We can’t wait for him to sit (as you would with a neurotypical child) before moving on to more advanced skills. Of course it would help enormously if he could sit, but the wait for him to perfect that skill could take some months yet. And although physically they won’t put Boo past the 8 month mark because of this, cognitively he is a one-year-old and knows what he should be doing even is his body doesn’t always do what he wants it to do. He bears weight enthusiastically. He wants to stand. He wants to walk.

So when his fabulous physio said ‘Shall we try some walking, Boo?’ He smiled and my heart stopped. Of course his trunk control isn’t good enough for him to walk with us holding his hands as we did with his big sister when she was 11 months. Instead, the physio had to put her hands under his arms and encourage him to elongate one side and transfer his weight to the other.

But you know what? He did it. He bloody well did it! He lifted his leg, not a little but a lot, and he grinned like you have never seen anyone grin about anything. The tone in his legs kicked in and his legs came inwards but as the physio said, we can work on that. He kept going for about a metre for what were some of the happiest moments of my life.

You see these steps were not just an amazing physical achievement. To me they were a symbol of his determination, of how far he’d come. And although they don’t signal anything much in a predicative sense (who knows if he will ever walk unaided) they offered me something that (optimistic though I try to be) I badly needed that particular day. Hope. Hope that his future is brighter than I could dare imagine on our toughest days.

Small steps. Big deal. And this time, I wasn’t dreaming. I know. Because I pinched myself. Just to be sure.

Ethans Escapades

You know you’re a Premmie/SEN parent when…

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…you have more medical appointments in a week than hot meals.

…the guy who runs the hospital car park occasionally lets you park for free because he is worried about your bank balance.

…you can direct lost visitors to parts of the hospital people on reception have never even heard of.

…you are pleased your favourite syringe made it into the steriliser and is ready for use.

…you have a favourite syringe.

…you don’t just know how many mls of each medicine your child has daily but can convert it to mgs without thinking.

…you can say things like periventricular leukomalacia without tripping over a syllable or breaking into a sweat.

…you are mistaken for a paediatric consultant (this has happened to me: three times in two different hospitals).

…you can speak almost entirely in acronyms (PVL, IS, GDD, IVH, PDA, NEC, CLD, SEN, IEP).

…you use the term inchstones rather than milestones.

…you stop using the word normal (even with air quotes) entirely and say typical.

…6 hours sleep feels like winning the lottery.

…you can parrot huge chunks of ‘Welcome to Holland’.

…you don’t see a child with disabilities and think what’s wrong with them but notice their amazing smile or beautiful face or how funny they are.

…you see what a child can do and not what they can’t.

…you are pleased when dressing or undressing your child becomes a wrestling match because it shows they have the muscular and mental strength to fend you off (see Exhibit A below and I hope he’s not intentionally flipping me the V, by the way).

…the smallest thing (the opening of a hand, the mouthing of a word, an act of mimicry) can make you happier than you ever imagined possible.

…you are utterly floored when your child tries to wave at you for the first time in their life and nonchalantly transfers an object from one hand to another as if they’d being doing it all their lives. Both of these things happened today, and yes, I am writing this post with tears of joy in my eyes.

…despite all the heartache and anxiety you feel lucky and grateful every damn day.

I would love for you to add your own ‘Whens’ to this list. Please use the comments box below. I love to hear from you!Image