Without wishing to compare my sweet-smelling son to a little boy who doesn’t wash… Like Pig-Pen collects dirt in Charlie Brown, Alex has a collection of his own: equipment. And he too cannot shake it off.
As all parents find, children bring what can only be termed ‘stuff’, or what we like to call ‘tat’, into the house. This ranges from scooters and bikes all the way through to the annoying plastic whistle that came out of a cracker.
That they will not throw away.
Whatever it is, and however you term it, it’s here to stay. In true Alex fashion his stuff is bigger, more durable and a lot more likely to take up the entire room. It is also essential to making life liveable and accessible.
Most of it I love because it brings ease to activities that would be hard at best, not worth trying at worst.
My favourite has to be his highchair. I don’t know if it was because it was first in the door or because it almost looks ‘normal’ or because I was just so grateful for something to make mealtimes simpler but anyway… ta daah.
The handy velcro keeps him upright (only now he’s starting to work out how to undo it…) and he can eat up at the table with everyone else. Which is so important. Because then we are together.
Then, there’s his buggy, the Snappi. There’s no doubt it’s a bulky piece of kit, and sometimes I just can’t face trying to squeak it down another not-quite-wide-enough aisle (and again I think, I should complain about this, but sometimes, you know, I only have so much fight per day), but it is great in so many ways. It is upright, so it helps maintain posture and also keeps Alex in the conversation – he’s not down at my feet, at an angle, he is there, he is present and joining in. Also, it has the snuggliest cosy toes so we can go walking, without worrying he is frozen. Most times, we’d just like to get in there with him it looks so inviting.
Last up, the portable booster seat with extra helpful straps to keep him upright and safe – seat 2 go. It is, you guessed it, a little unwieldy but it has got us out and about as a family. Not only do we sit round a table at home, but with this we are able to sit round a table in a restaurant, on holiday, someone else’s house. We do not have to use his pushchair and for that, good God I am grateful because it just pushes normal back into our lives again. Look, I will think, we are out, doing something just the four of us, how often did you worry that wouldn’t happen?
The list does go on, enter his great big car seat, 5 point harness, swivel base for easy access in and out of the car… the walker and specialised high/ low seat at nursery for him to access activities, and all the equipment from Brainwave to aid his physio at home (here it all is in our room):
I do have moments where I think, Really? All of this is in my life? Shouldn’t it have been getting easier at this point? But, you know, dwelling gets me nowhere productive. And here I am, this is where we are. *Channels Pollyanna*.
As life moves on, as Alex (ahem) grows up, he and we will need and benefit from different equipment which is, in a sense, where I came in. The wonderful McLaren we have is too small and I would like to get him a bigger lightweight pushchair for those smaller journeys – where we don’t need/ cannot face dis-assembling the beast that is his luxury SN machine – moving in between house/ car/ nursery/ the shops. This may seem like a ludicrous luxury but it both makes the journey something I want to attempt (as opposed to not doing it at all) and saves my back and that, with Alex weighing in at a healthy 16.5kg, is becoming ever more important. The trike would be amazing, just to take our children out together, cycling together as they should. Again, it’s the small things, but the sensory benefit our little boy will get from being out there, front and centre rather than buckled in his pram, and that we will all get from being out together (there’s that normal again) is priceless. And we are moving ever closer to needing a secure, height-adjustable bed to both keep him safe, and protect our joints.
Bulky equipment yes, but needed, necessary and life-enhancing. Which I think is all any of us ever want to give to our children.