When Rufus was really, really tiddly, for a long time I would go to bed at night and hope I would wake up to a baby that looked the right size. That I’d go to see him on the neonatal unit and maybe see a bracelet of fat instead of ribs, a dimple where I only saw joints. Even when he came home, sometimes it’d shock me just how little he’d look in commonplace environments. When I first put him in his own cot, when I would lay him next to what the health visitor deem as ‘age appropriate clothing’, and especially any piece of baby paraphenalia that a mum’s group or site would recommend for his age. If he did go in them, they would be padded out with towels, blankets, muslins. Cushions to help his little chicken feet reach the bottom. He came from Lilliput, my elf, a version of Liliput where their muscles were a little bit dodgy and they got tired very, very quickly.
Behind my back he was trying his best though, he was growing. There were no miracle spurts, but suddenly he could go in something with one less rolled towel, with a slightly straighter back, able to not navel gaze for the duration. These things became my lifesavers, much, much later than most people get the advantage. It started with a bouncer, taken onto NICU.
In terms of its cost per use, this bouncer has cost us next to nothing. It saves us on the nights where reflux or teething or an unidentified virus means that Rufus just won’t settle in his cot, when he needs to be at an angle to make him comfortable. When he wants to bang his legs and feel the whoosh of the chair. It bears stains that will never truly wash out, it now creaks under it’s excessive movement. We pimped it with an overpriced toy which he has also beaten into shape with other toys. And here I am, getting heavier with D mark II, wondering how they are going to share it when Rufus is so reluctant to go cold turkey from his best friend. It has its brethren, which I will cover, but it’s the bouncer I worry about the most.
And it’s not just the worry that mini D that’ll be making a bid for it, it’s that sneaky growing he’s been doing. He near fills it now. His head dangerously close to the top, his weight pushing it back further, making it creak louder. Much to his own delight he can make it rock back and forth so violently that I expect to find him head first in the television one day. He can bang his feet loudly on the plastic base. All these things make it the more appealing to him. I can no longer rely on him being small for his age, my elf is trying to shape shift into human form.
So now what? We need occupational therapy. Gulp. Dipping that toe further into the pool of disability. Helpfully we’ve been informed that there is an 18 month waiting list for OT, and because Rufus is yet to get the key to the door and turn two, he might just ‘catch up’. Erm, that would take some drastic physical development in two months then. And bless the wee lamb, he’s trying his best, but like the bracelets of fat, I don’t think I’m waking up to that scenario anytime soon. But I’ve been doing some research on the side, looking into whether there even exists a special needs version of the bouncer. But apparently disabled children don’t need much in the way of fun. They need support, wipe clean fabrics, and something fashioned by the same people that design those itchy train seat fabrics. I like my house, I’d rather not ‘institutionalise’ it.
This week the physio delivered his finally recovered ‘puppy’ standing frame. Ahhh, how cute eh? Who doesn’t like puppies? Oi, behave you lot! I can see it’s benefits. Once he’s strapped into it Clockwork Orange style, Rufus doesn’t seem to hate it. But it’s a monster, a primary coloured beast on wheels. It doesn’t rival his £30 Bobby walker though, but the physio gave me that roll of eyes that lets me know she knows best. Rufus and I looked at each other with a wink, just pretend we use that and the corner seat, and not the Jumperoo, Bumbo and the walker all day eh?!
I’ve been let down enough by professionals to not put my hopes in OT either, restricted as they are by budget cuts. I’ve read many a blog or post from parents of children who need specialist equipment despair at what’s on offer, or what you get. And until Rufus is two, I don’t even get an invite to that exclusive party anyway.
It was when I was addressing my caffeine, and overriding need for cake, in a Costa coffee the other day (I promise this post isn’t sponsored despite the brand dropping) when I saw that they had oversized “British Favourites”. A giant Bourbon, or Custard Cream anyone?
Ah ha, this is what I need! I need baby companies to supersize their equipment, what else do you do when chronologically your child is a toddler, but his body leaves him languishing in the 5-6 month mark?
So, come on, supersize these please:
The thing is, I want all these things to stay as discreet as they are now, to slide out of the way (the Jumperoo being the exception). Because I don’t want people to see Rufus as the equipment he needs, dwarfing him. I’d like them to see his cheeky smile, his squeals of delight, the glint in his eye as he knows he’s achieved something others may take for granted. And like at Costa, I need these things upscaled just enough so I can really enjoy my cup of coffee!
Some lovely blogs also highlighting the highs and lows of specialist equipment are: