Tag Archives: Small Steps Amazing Achievements

Three little words

It’s been ever such a long time since I have linked up to the fabulous Small Steps Amazing Achievements or the life-enhancing weekend link up over at Love that Max. But that’s not for want of inchstones, here. There have been plenty.

No: the problem has been me. I won’t lie to you. I am really struggling at the moment. Really struggling. Hence the blog radio silence. The weight of appointments and admin and the huge hurdles in front of us at the moment around education, work and the many milestones that it seems ever less likely Boo will ever meet feels totally overwhelming. I try to be positive. And in the day-to-day when I am with Boo and playing with him I don’t feel so bad. Because I just enjoy him and being with him.

But in quiet moments (the only moments I can steal to blog in) I feel totally at sea and worried I am drowning. I don’t know how to swim to shore any more. It is horribly disconcerting.

It’s hard to summon up the wherewithal to write about Boo’s achievements, no matter how proud I am of them. And I am. Because for every inchstone met, there are a dozen milestones receding into the distance. Just two minutes ago I put in an application for mobility DLA (Disability Living Allowance) for Boo. I can honestly say it is one of the most heartbreaking documents that I have ever had to write. The catalogue of professionals and list of all the things he cannot do is just too much to contemplate.

But what I know deep down, even if it is hard to summon up this feeling in these rare, dark quiet stolen moments is that the feelings of desperation I feel on his (and if I’m being totally honest, mine and his father’s and sister’s) parts make it all the more important to chronicle and celebrate his achievements.

And this has to be the biggest of the past few months. Speech.

Now don’t get too excited and think he’s reciting the Gettysburg Address all of a sudden. Or even a single sentence. But Boo’s speech is still coming on a bundle. Words he had before – ‘Mum’, ‘Dad’, ‘up’ (meaning: pick me or else, Mum), ‘go’ (meaning: why are you so blinking slow at everything, Mum?), ‘yeah’ and his current favourite ‘no’ – are so much more distinct. And he has got a pretty impressive range of other phonic sounds now, most of which he will say on sight of the relevant jolly phonic flashcard. We are still struggling with s, z, v, z and h but we hope they will come with time.

And he has all of his vowel sounds now: the last one ‘ee’ arrived out of nowhere one day just before Christmas. He still struggles to put these sounds together. He can say ‘p’ and ‘l’ and ‘ee’, for example, but if you ask him to say please he says ‘eeeeeeeee’. But it’s a mighty strong start nevertheless.

It’s all about putting the building blocks in place and seeing where we can get with them. Building up from sounds to single words. He has new ones every week or so at the moment. A new addition is ‘ewlp’ meaning ‘help’. My personal favourite, because it is always said with a cheeky smile on his face, is ‘I duck’ meaning ‘I’m stuck’, which is code for I’m a toddler get me out of here! I can’t wait to hear what comes next! Once you have words, it’s all about putting them together of course. And Boo is trying out that fun game: ‘Mum, go’, ‘Mum, up’ are the soundtrack to my life. And there are some even more impressive strings of words coming along. The other day I was singing the title music to Something Special (to myself, not Boo, you everyone does that, right?) and I got as far as ‘Hello, Hello’ and was about to launch into ‘how are you?’ when I heard Boo at the other end of the dining room say ‘ow ar oooooo?’ at which point he burst into hysterics at his own amazingness. I squealed so loudly Sissyboo said, ‘Do we need to phone the hospital Mummy?’ Where did that come from?

But best of all is the way that Boo is mimicking speech patterns. Boo does everything in his own way. He isn’t going to follow the whole, phonics, words, sentences, conversation logical progression any more than he is going to roll, sit, stand, walk, run. No, he may only have 20-30 or so words, and have lots of sounds he cannot say at all yet, but he is still trying to replicate the patterns of words and phrases he hears. So if you say ‘garden’ to him he will repeat: ‘ah’ ‘ah’. Two syllables. Two sounds. If you say ‘that was good’, he might say ‘a ah ooo’. It’s very sweet.

But nothing is sweeter than the three little words he has been saying for a few months now. Words he has heard an awful lot since he was born so very, very early: ‘Ah. Uv. Ooo’ (‘I love you’). The first time he said it, I cried. The first time he said ‘Ah. Uv. Ooo. Mum’,

I cried. Of course, I knew he loved me, his dad and his sister before he told us. One of the many things Boo has taught me is how we communicate in so many other ways than through speech and writing. No: I cried for a whole bunch of other reasons. Because he had hit his mark and progressed with his speech at a time when many physical milestones seem more remote than ever. Because it was such a physical effort to arrange his body in such a way as to produce these sounds. Because when he was only 2 weeks corrected age an utterly unfeeling prematurity paediatrician told me my child would likely never speak at all.

In my dimmer moments now I feel like I am back in that awful appointment over 2 and a half years ago. And so I replay Boo’s words in my head and realise that he has made a future for himself that is so much brighter than anyone predicted. And for that, I am very grateful.

The One Where a Swimming Lesson had me in (happy) Tears

This one is a happy post, I promise. Thank you for sticking with me through the last few difficult posts. I am really struggling at the moment. I am hopeful things will get better but trying to work out alternative plans if they don’t.

When people ask me how I am these days, my answers are full of water metaphors. You see sinking or drowning are just about the best words I can think of to describe how things feel at the minute. But (I know: I promised this would be a happy post and it is!) Boo isn’t. I’m pleased to say that he is swimming away against the tide and keeping his head proudly above the water.

If you read this blog regularly, you’ll know I take Boo to weekly swimming lessons. There is no hydrotherapy here and swimming is so good for Boo’s movement. And he can do things in the water (like roll) that he can’t do on land. He has just completed level 6 of a series of private swimming lessons in a lovely, local, hydro pool. It’s a mainstream class. I wasn’t trying to make a statement in putting him in a mainstream class, I should say, but there are woefully few SEN swimming classes anywhere local for children under 5.

Of course, I know his days in a mainstream class are numbered. Already, we have to adapt a huge number of the skills being taught to the class for him. This level, for example, has seen the kids moving in their class warm up from sitting and rolling in from the side of the pool (which Boo could manage with me holding him under one arm pit) to standing (yep: can’t do that) and jumping (yep: can’t do that either) in from the side. But I take him to the shallow end, hold him as I would in supported standing at home. Try to get him not to stand on tiptoes and shout ready, steady, go and wait for any sign of pushing in his legs to jump him in myself.

His teacher is SO supportive and lovely. She always offers help when needed and never thinks twice about asking Boo, just like all the other kids in the class, to demonstrate new skills. She doesn’t want him to be left out. She treats him just like everyone else.

And the result of all this is that Boo LOVES swimming (especially underwater). All the other kids (as Sissyboo used to) spend at least some of every class in a sulk, complaining about water in the their eyes or running around the pool edge in protest because they don’t want to be told what to do. Boo, who has lived with a drillmaster of a Mummy for 2 years, thinks sulking is for wusses and screams and laughs and yells ‘more’ from the minute the class starts until it ends. Boo is one of the happiest children I have ever met and he is never happier than in the water.

We are about to move up to the next level after a short class break. In an ideal world, he would repeat level 6, but there’s no space in that class next term and the school can’t accommodate the request. I remember level 7 well when I did it with Sissyboo (who has now completed all 24 class levels and is a veritable 750m swimming fish). I remember it because it was the level where in play time at the end, the kids climbed up onto the raft they’d only sat on in previous levels, before being asked to run along it and jump off the edge to mummy or daddy. What I had forgotten was you first try out this new skill in the last class of level 6.

When his teacher explained what we’d be doing this last Saturday I just said. ‘OK: this’ll be interesting’. She said, ‘It’ll be fine. We’ll hold him.’ A million thoughts flashed through my mind. What if he slipped? What if the other kids stared at him? What if this was the moment they realised he was different? Would the parents pity him? Or me? We don’t want pity…

The thoughts stopped as Boo was put on the raft. His teacher held him up. I grabbed his one arm and a dad on the other side of the raft (without being asked) grabbed the other and Boo stepped in the scissory, tip-toey way he does in bare feet with the most massive smile on his face. Every one cheered him and called out his name and told him how clever he was.

The tears welled up in my yes. He was doing it. In his own way, of course. But he was only bloody doing it.

And people didn’t feel sorry for him or me. Rather the kids and their parents were supporting him (and me) both literally and figuratively. They wanted him to do this as much as I did, I realised. And when he did and they clapped and cheered, I could see through misty eyes that they were proud of him too.

It was an incredible moment and I’m not sure I can do it justice in the retelling. But in those few precious seconds I felt like we were all there holding Boo up and letting him show us his best. And it was such a joy to see. I want his whole life to be like this. He has so many amazing things to show us. I just know it.



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!


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.


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.


Moving on Up

Monday was a big day for the Boos. Sissyboo had an inset day (or an insect day as she insists on calling them – I wonder what she thinks the teachers get up to…) and so I took her to Chessington World of Adventures for the first time. We had a great time, bumping into half her classmates (great minds…), looking at the animals and going on virtually every ride there. She is just 1.2 metres now, which means that almost all the rides, including some terrifying ones, are there for her to try. And Sissyboo is a trier (like me). Unlike me, however, she is also a daredevil. So when she begged me to go on Dragon Falls, a log flume type thing with a massive drop at the end (how is it safe to drop from a great height in a plastic box on water?) I said  ‘OK’ in my best ‘Me? Scared? Never!’ tone of voice.

I spent the whole ride waiting for the drop at the end, heeding the Chessington guide’s advice to put my arms round Sissyboo and get her to hold the empty seat back in front. (The park was so quiet. If half of her school hadn’t been there, it would have felt like Westworld). Anyway, I held her about as tight as I could reassured her (unnecessarily) that it would be OK and not to be scared (she wasn’t) until we plunged at great speed to get soaked in the name of fun. And you know what? It was. Although it wasn’t so much fun that I would agree to her pleas we did it again straight away, I enjoyed it. My little girl is not so little after all.

Back at home Boo was making a plunge of his own. Monday was Boo’s first full day in the Toddler Room at his nursery. Until now, and despite being much, much older than all the other kids, Boo has been in the Baby Unit. It makes sense. No developmental consultant will put Boo past 8 months physical development because he can’t sit independently. Most of the other babies in the Baby Unit can stand before they leave there; many can walk. Boo can’t do either and may never do either, but he is speaking a little and even though he finds them difficult to manipulate, he wants to play with toddler toys: pop-up toys, puzzles, shape sorters. Cognitively we won’t know exactly where he is for some time, but at the moment he seems to be where he needs to be.  Which means, as his physio pointed out, that he needs to be with kids his own age. Toddlers. Even if Boo can’t toddle

The nursery has prepared themselves, Boo and us for this well. Staff from the Toddler Room, including his new key-/one-to-one worker visited him in the Baby Unit and observed him doing his daily physio several times. He did lots of visits to the new room. I went in for a meeting with the room supervisor. Boo’s physio went in to talk to the staff in the new room about Boo’s needs and demonsterate his exercises.

But it still felt like such a huge deal. His difference is so visible there. When we dropped him off for the first time, one of the girls welcomed him and made him giggle but looked at us quizzically as we just stood there for a minute. She was waiting for us to put him on the floor and let him walk over to a toy like the rest of the kids, then she remembered this wasn’t Kansas anymore and let us pass Boo to her so she could decide where to put him safely.

When he came home he seemed a bit more tired than normal, but very happy. But I couldn’t shake off my doubts and worries. It’s one thing to be lying on a playmat in a room of babies, quite another when they are running at break-neck speed to the water tray. What would the other kids think of him, I worried? Would they not want to go near him? All I could see was a life-time of difference rolling out in front of him. And it left me sobbing at my desk at work despite the nursery sending happy pictures of him home to us in his daily physio/activity book.

But then I went to pick him up yesterday and saw for myself how Boo is getting on. As I walked through the door, he was giggling furiously. Another little boy (who apparently adores him and brings him toys all day) was blowing him kisses. Another was saying his name respeatedly. They showed me some pictures of what he had been up to that day. He was standing at the water tray, holding himself up on his own by propping.

He was standing up, people! (Ok, he was using the tray like a standing frame, but we’ll take that.)

Then they showed us pictures of him dancing when they were singing earlier in the day. He looked so happy. So at home. The other kids looked so comfortable around him. And then I remembered, 18-month-old children don’t have enough sense of normal to know anything about what’s different. I hope knowing Boo will mean that some of them don’t associate different with bad or defective when they’re older.

So today, when I dropped Boo off, I found myself behaving like I did at Dragon Falls on Monday. My nerves were still there, but I put on a brave face and held on tight until the moment I knew I could let go.

Because my babies are growing up. I will never stop protecting them, but we all need to take a plunge sometimes and I need to let go sometimes, too.

Will the Real Mr Boo Please Stand Up!

Special needs equipment turns out to be like those proverbial buses. We have waited months and months for Boo to be assessed for the seating he so urgently needs and now he has been and hopefully, fingers crossed and if the wind blows in the right direction, the funding will be found and we will get a chair for home and nursery in about 6-8 weeks.

In the meantime, we saw Boo’s lovely physio this week and were presents with these funky things.


 photo (20)

For the uninitiated, these are Piedro boots: orthopaedic footwear to help kids like Boo with foot stability, to help toe spreading (rather than the curling and toe pointing his high tone can produce), and encourage weight bearing. They hopefully will also help with sitting in the Breezi chair I got him and get us nearer than 90 degree angle we’re looking for.

They are also essential for this:


photo (18)

See what I mean about buses! This is a standing frame on loan to us from our physio until they put in a grant application to fund one (fingers on other hand crossed now) in the next few months.

Of course, no parent wants their child to have to use a standing frame. And we are still working, when we’re not focusing on our main goals (sitting and rolling from back to front), on getting him to stand by just using us for support. But the standing frame can do important work by encouraging weight-bearing in a posturally optimal way. This, in turn, we hope might help to prevent it mitigate the hip problems (displacement, for example) that trouble many children and adults with cerebral palsy.

I had mixed feelings about getting Boo strapped into his Dalek-mobile, as we now call it. But I knew the potential benefits. What I should have anticipated, knowing Boo, but didn’t, was how much he would love it as the cheeky glimpse of his smile in the photo will tell you.

From the minute he got into it and stood proud and tall he started giggling and shrieking. (So this is what the world looks like from this angle! Look, no hands, Mum.) And when he realised that the play tray was only attached by Velcro and concealed a bowl to put toys, dried pasta or messy play objects in, he looked as if all his Christmases had come at once.

OK this isn’t independent play, exactly, since he is dependent on the frame and boots for stability, but he could play without me holding him up. And he clearly got a huge kick (pun intended – being kicked by a baby Hulk in Piedro boots hurts, for the record) out of something that only ever happens when he’s on the baby gym he’s way too big for.

I wish I could post that Boo is standing freely – her may never do that – more than that I wish I could post that he is sitting. I desperately want him to sit. But this is a step in the right direction. A step towards a new perspective on life for Boo and for us. A step towards independence. And that feels pretty amazing.




It’s been a hectic week. Lots of appointments, lots of work, writing letters of complaint to our PCT, lots more appointments, lots more work, and writing another letter of complaint. In the midst of all this, catching my breath is sometimes a real act of will. These are the weeks when it’s hardest to see the word for the trees, to see the real progress that Boo is making.

But it is there. It is. Take his arm and hand function, for instance. I am fixated upon Boo sitting independently. I cannot wait (what am I saying, I’ve been waiting nearly a year) for him to do this. It will make such a difference: to his perception of the world, to his independence, to how others perceive him, and to my breaking back. But he’s still not quite there. He’s been getting closer for ages and it’s so frustrating in these (I hope) final stages. When I was expressing this frustration to his physio yesterday she helped me see things differently: ‘Well you know why he’s still not there yet, don’t you? It’s because his hand function has improved so dramatically. Sitting and moving his arms is tough for him. If he were sitting independently now, he’d likely be propping using the stiffness in his arms and unable to use his hands. Much better this way round.’ Indeed. Of course, she’s right.

But there is one glimmer of progress that even I can see this week. Actually, it’s been developing for a few weeks, but I’ve been too nervous to blog about it in case I’m wrong or jinx it somehow. This week I feel confident enough that I am not deluding myself.

I think Boo is starting to try to say things.

At his age (17 months actual, 14.5 corrected) Sissyboo was talking in sentences. (How many times have I wrote variations on that sentence since starting this blog?) I know she was ahead of the game, so I haven’t been too worried about Boo’s speech. His developmental consultant wasn’t either, but referred us to speech and language because his brain damage and seizures mean he is high risk for cognitive delay and problems and there is a good chance of minimising the effects of these with early intervention. (8 months on we are third on the ‘urgent’ SALT waiting list!) The Grumposaur has been much more worried about Boo’s speech than me. I figure if Boo can understand us, we are onto something good. And although sometimes I worry I’m deluding myself, Boo clearly knows his name, all of his family member’s names, the names of his keyworkers at nursery and evidently understands words including ‘milk’, ‘lunch’, ‘bath’, ‘no’ (although he clearly thinks it’s a negotiable term) and various others.

But what has slightly worried me is that Boo hasn’t gone through that ba-ba-ba-ba babbling stage babies do from 6 months onwards. He vocalises. A lot. And has lots of vowel sounds (oh, ooh, ah etc). And I never feel like I’m in much doubt as to what he wants. But no babbling.

Until the last few weeks that is. Now we have a range of consonant sounds too. He makes a sound which remotely resembles his sister’s name, and seems to say ‘hiya’ from time to time. We really weren’t sure whether we were hearing what we wanted to and making a mountain out of a mole-hill. And then he started with ‘da-da’. It sometimes comes out ‘a-da’ or ‘and-a’ but we think it’s ‘da-da’. He usually says it when his dad’s not there. And he will copy me (not a hundred per cent reliably but pretty reliably) when I make the sound to him. His voice, like his temperament, is soft, gentle yet excitable.

When he was lying there in that incubator last April and May and I thought about our future, I didn’t usually imagine him walking or crawling (the stuff of some of my most vivid and sometimes distressing dreams now). No: I imagined a toddler him snuggled up against me on the sofa, looking at pictures of him in the NICU and me talking to him about how amazing he was and how far he’d come. And then I imagined him talking back to me. Asking questions because he couldn’t remember any of it.

Like my son, I don’t want to speak too soon, but I have a little fluttery feeling in my stomach telling me that this dream might actually come true. And it is music to my ears.