Tag Archives: small steps

Small Steps Amazing Achievements

I have longed for the day that I could link a post to one of my favourite linkys with this title. Small Steps Amazing Achievements, is run by the lovely Jane over at Ethans Escapades. It isn’t exclusively a special needs linky, but many of us who post over their are, like Jane, parents with children who have additional needs and for whom the little things are huge.

But this week, Small Steps Amazing Achievements takes on a new meaning for me. And here’s why.

A few weeks ago we have an appointment with a rep from Rifton. As Boo has been showing lots of interest in stepping since having his Lycra suit with us supporting under his arms, his physio wanted us to look at walking frames. Boo needs one with various bits of support, especially round his trunk, and the Rifton Pacer seemed like our best bet. So we tried one out.

I was nervously excited about the appointment days before it took place. I want independent movement for Boo so much. I want him to have the chance to walk with an aid if he can. If the appointment went well, his physio would put in a justification to the panel to see if the PCT might fund the purchase of one for him. It was almost too much to hope for.

The day of the appointment was a bit of an anti-climax, though. The rep was lovely, and my heart did skip a few beats in joy when it turned out that Boo didn’t need all the supportive kit the Pacer can provide. (We were taking bits off a piece of equipment, folks, rather than adding it on!) But the much-needed thoracic support on the Pacer which was keeping Boo upright was also clearly going to cause him problems.

You see when Boo steps with us, he initiates the first movement by using his high tone by going into extension (so stretching himself up and back) which gives him the rotation he needs to get going. Obviously he shouldn’t walk like this, but as his physio says, ‘if you’ve got it, flaunt it’, even if what you have is high tone. The thoracic support prevented Boo from doing just that.

He stood up quite happily in the Pacer. In fact he really seemed to like it. I think he thought it was a standing frame, but then looked concerned when it started to wobble if he pushed on the hand grips. But the brakes on Mum, his perplexed expression said.

We did get him to step, but only by initiating every single leg movement manually from behind him. We tried all manner of bribery and corruption but nothing persuaded him or enabled him to get his legs moving on his own. The minute we got him out of the walker he wanted to step. But not in it.

My heart sank. I worried they wouldn’t put a justification to panel. I worried this would go to the bottom of the list. But his physio and the rep were lovely. They said Boo would get the hang of this eventually. He would have to learn new ways of doing things, but he’d done that before and he and I were pretty determined people so they would work on the quote and justification.

Two weeks later we went for Boo’s next physio appointment where we learned that the justification was drafted and ready for panel (whenever they next convene) but in the meantime, since these things take ages and outcomes are always uncertain, an old Pacer had been found in stock for us to borrow. We tried again to get some stepping going, but nothing doing.

We took the Pacer home, but during half term we ended up travelling a fair bit and couldn’t fit it in the boot with all our other kit. Heck once Boo’s buggy is in the car, never mind the rest of his essential kit, we can barely take clothes with us.

When we got back I decided we would have a concerted go at getting Boo to get what the walker was all about. Instead, my poor old back just suffered dreadfully as I manually moved each one of Boo’s legs with one hand while holding the frame with the other and wearing holes into the knees of my already falling apart jeans. I had a terrible back pain flare-up and developed hideous pins and needles down one leg. My physio – yes, I have one too, now – was not impressed with me.

I got lots of helpful advice on Twitter about incentives to get Boo moving. I tried crinkly surfaces, a ball to kick and a mirror to walk to (which is a good trick for most other physio exercises we do). No luck. Boo just kept giving me the cute ‘Why is my standing frame moving, Mummy, and why don’t we watch In the Night Garden instead?’ look.

I decided to give it a break. I had to give my back a break. And then a couple of days later I was doing the vacuuming and listening to the apoplectic squeals of delight Boo makes when I turned it on, which quickly turned to shouts of ‘more’ when I turned it off. (Sissyboo used to like hoovers, too. They do not get this love of vacuums from me!)

It gave me an idea. I asked Boo if he wanted to do some steps to the vacuum and then we could turn it on again and play. He said ‘yeah’. So I strapped him in and told him what we were going to do. I knew the first step wouldn’t come naturally, so I made it for him and then asked him to step fully expecting him not to be able to. As I reached down with my hand to make the next move, he bent his leg and brought it forward.

I pushed the frame and said step. The other leg bent, rose and landed. He was stepping. He was only bloody stepping.

I tried not to let him hear I was crying in case he thought I was sad. I was anything but sad. I was bursting with happiness. Ten paces later we were at the vacuum and I turned it on and pretended to hoover him up. He brought his knees up to his chest in delight (don’t tell his physio that, OK). And we did it once more.

20 steps in total. In a frame. With assistance. Small steps, definitely.

But honestly, I can think of few more amazing achievements for Boo. I don’t know what this means long term. I don’t know if some steps will turn into lots of steps. If one day he might walk about school in a walker. For now, that doesn’t matter. What he has done is what matters, not what he might or might not. Because these small steps forward couldn’t be a bigger indication of his capacity to try and surprise us all. I am so proud of you, Boo. So very, very proud.


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!’


My Little Water Baby

I’ve been a bit quiet about Mr Boo in my Small Steps Amazing Achievements posts over the past couple of weeks and have handed over to Sissyboo, who’s been making great strides of her own.

Boo on the other hand… Well, let’s just say things haven’t being going quite so well. If you want to put an optimistic spin on it, he’s consolidated skills he’s been learning over the last few months ready for the next developmental spike. Another way of looking at it is that he is temporarily plateauing. To be frank, for about three weeks it has felt like we’d hit a brick wall and were struggling to get ourselves up following the impact.

But you only need a little glimmer of hope to get the gumption to pick yourself up, dust yourself off and move forward, I find, and in the past few days there have been a few little glimmers. One involves Boo’s promising new obsession with his feet, which may well form the basis of next week’s Small Steps post, but for now, I wanted to focus on quite a different achievement.

Boo is a cygnet!

photo (15)

For those of you who don’t follow the Aquatots swimming programme, that means Boo that has completed his second swimming level and a bunch of skills associated with it. I am so proud!

I started taking Boo swimming in September of last year. His sister had started Aquatots swimming lessons at about 4 months of age. We took a break of 18 months at one point, but now she’s nearly finished all of the 20-something levels and at age 5 1/2 can swim 17 lengths, dive like a pro, and is much more confident and safe in the water than her mother!

In fact that’s why I started swimming lessons for her. My own mum has a pathological fear of water, which she successfully passed on to me and I only learned to swim myself as an adult. Not only is this a bit embarrassing, it’s also a safety issue. I didn’t want my kids to be like me. In fact, that just about sums up my parenting goals full stop.

Even after Boo was born prematurely, I knew I wanted him to have lessons like his sister. So he was safe in the water. And when his muscle tone issues became more apparent, I became even more determined. Many children with cerebral palsy and other neurological and motor disorders are prescribed hydrotherapy as part of their treatment. Where I live, this isn’t an option, but private swimming lessons were, and if they could help give him more awareness of his body in space, that could only be a good thing.

But the reality of swimming lessons was even better than I’d thought. Boo has developed a freedom in the water he doesn’t have on dry land. When he started, his arms were rigidly down by his sides. Slowly he started to move them forwards and attempt to grab toys or the side of the pool (albeit often with clenched fists). Most of all though, he just loved being in the pool. Like his sister, he is a real water baby and he loves being around other kids his own age. He laughed from when the class began to when it finished every single week.

And then came the damned infantile spasms and the steroid treatment and level 2 swimming had to be abandoned. I missed it. I felt Boo was missing out therapeutically too, but there was nothing we could do. It was a happy day, indeed, when we took it up again in May. Boo hadn’t forgotten much and squealed even louder during lessons.

So what can he do? Well, he can ride piggy back on me while I swim round the pool (usually eating my hair, I have to add). He will kick his legs when suitably encouraged and reach out for toys in front of him, even if he finds holding them difficult. He tries to grab the side of the pool. He happily goes under the water and knows to hold his breath when I give the ‘ready, go’ command and kicks to the surface. He can swim about half a meter underwater himself and completely independently (yes, I used the words independently and Boo in the same sentence). And although he’s not supposed to do this, I love the way he rolls 360 degrees as he swims forwards.

He can roll in the water. Let me repeat that: he can roll, yes roll, in the water.

After I don’t know how many months of practice, he still can’t roll on dry land and might never be able to. In the water he can. He shouldn’t. But he does. And he loves it and I love it too.

One of the other things I love about all this is that this is not a SEN swimming class. I have nothing against SEN classes and can see that we will only get so far with Aquatots lessons before Boo’s physical challenges prevent him from progressing in the way his peers do. A SEN class will clearly be the right place for him then if I can find one locally. But at the moment, there is not very much difference between Boo in the water and the other neurotypical kids in the class (some of whom are a fair bit older than him). And maybe it’s wrong, but I get a kick of that. When the need arises, we’ll regroup and find a more suitable class for him, but for now I’m sticking with the lovely teacher and fabulous hydrotherapy pool we have access to. The half an hour we spend together in the pool is some of the best 30 minutes of my week.

Well done, Boo, my little cygnet. I am so proud of you. And you know what? One day, you’ll be a swan, baby. I promise you that.