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.