What a wonderful thought it is that some of our best days of our lives haven’t happened yet…
Updated: Mar 3
Back when I first had Oscar, I remember thinking I didn’t allow myself to imagine, what life might be like too far into the future for Oscar, Chris and me. It just felt like too much to think about, too soon. The future was a scary place, you see. It was the unknown, I suppose.
I know back then, I could cope with seeing other small children, a couple of years or so ahead of us but if I came into contact with anyone with Down Syndrome, that was just that little bit older, I remember holding my breath and wishing and willing that they’d be ok.
And when I say ok, I basically mean that they were coping. That they were happy. That their parents were happy too, I suppose and that life for them all, wasn’t all that different, than the next person.
You see, that had been one of my biggest fears. I’d had this preconceived image in my mind about how I imagined our life would pan out. How I thought families who happened to have someone with DS in it, lived their lives… and back then, I so hoped I was wrong.
Of course, now 5 and a half years into this journey I realise that actually, life for us isn’t all that different from what it would have been like, had we just had three small children regardless of one of them having additional needs. When we take all three out on their scooters, it’s always a work out to keep up with them. When we tell them we’re leaving the children’s playground, all three of them put up a big old protest refusing to leave and when we tell them it’s time to turn off the TV and come and eat their dinner, they totally all pretend they haven’t heard us, so they can watch the end of an episode of “Go Jetters” they’re sat there engrossed in. Not unlike most households I imagine.
Having Oscar, in so many ways, isn’t too dissimilar to having any other child…
Only sometimes it is.
This may just be me. And perhaps by admitting this out loud I may be in for some backlash or perhaps, by talking about it, some people might understand exactly where I’m coming from (I hope so anyway).
But when you have a child like Oscar, you sometimes forget the quirky little things he does and the way that he acts, that may to others, make him stand out as being different. Things that have just become your norm, that to some may seem a little odd. Like sometimes when he’s tired, instead of telling me that he can’t walk any further, he’ll put his finger in his mouth and chew down on it, making a moaning sound. He’s always done this to be honest… since he was a baby. I guess it’s his thing. But I figure to others, If you’re not used to it, it may seem a little strange.
And when, on the odd occasion he gets cross, usually because Alfie or Flo have taken a toy from him that he’d wanted, he’ll stand there for a few seconds looking annoyed, then because he doesn’t quite have the words to tell them that actually, “I was playing with that”, he’ll run at said toy and head butt it. Odd, hey?!
For the most part Oscar, aside from the obvious characteristics that a person with DS might have, looks and acts like your average child. He runs, he jumps, he plays, he interacts but sometimes these little quirks, that make him him, crop up and it reminds me of how differently he can behave to the next child.
Last week, as we were about to pick Alfie up from Preschool though, Oscar, Flo and I had to cross a road to the entrance. I had noticed a lady standing on the other side of the street but hadn’t thought much of it. As we approached the road I told Oscar to stop and wait. Which he did. I asked him to look for cars and understanding the instruction, he moved his head from side to side, to check. And when I confirmed that there were no cars, he waited for my “Ready steady go” before heading across. To anyone watching it would have looked like:
A) I totally had my s#%t together and
B) that Oscar was this angel of a child who always listened to everything I said ??
And as we approached the other side, the lady who’d been stood there and who’d witnessed this display of A* parenting ?, asked if I was Sarah as she’d heard about the blog and Oscar etc. You see, a relative of hers, had just given birth to a baby boy who happened to have DS and she knew that I’d been chatting to her via this page.
We talked for a while. About the new baby and about the diagnosis. We touched on how things were in the beginning for us versus how they are now and all the time we were chatting, I felt secretly smug that she’d witnessed Oscar crossing the road and generally being on top form.
You see it’s something I’ve always been conscious of. I guess because of how I’d once felt when I’d first had Oz. But when meeting new mums (or family members in this case) who’ve just had a baby who happens to have DS, I’m suddenly so much more aware of how Oscar’s behaving and how he’s “seen” by others.
Because you see, I recall all too well when I had just had Oscar, that I hadn’t wanted to see ‘different’. I of course wanted to see other children with DS but I wanted to see that they were ‘normal’ and being brilliant. I hadn’t wanted to see them acting differently to the next child.
In this instance I had hoped that Oscar could show this woman that he was indeed just another little boy, leading a pretty nice life. He wasn’t a burden, he wasn’t too much to handle. He was just Oscar.
Having finished our conversation with the lady, my attention was turned back to Oscar. He and Flo were rearranging the bins in the Preschool courtyard area which again I thought wasn’t too big deal and might not be too dissimilar to the next child. How lovely it was for her to see him playing, I thought.
Just as I was saying goodbye, Oscar started to run with the little food waste bin and head towards the Preschool entrance. I called after him to stop, only he had other ideas. He ran faster and it took me a while to catch up with him (ever hopeful that he might have listened to me, I actually didn’t set off straight away, giving him the benefit of the doubt. Rookie error). Once I had, I asked him to go and put it back. Only he didn’t want to. I asked him again, aware now that a crowd of parents (and the lady I’d been talking to) were gathered by the entrance waiting to collect their little ones. I told him I’d help him, which he seemed a bit happier with so we walked together to put the bin back. Flo had joined us by now, finding the whole thing hilarious. We put the bin back where he’d found it and before I had a chance to say thank you and well done, Oz bolted. He ran back towards the Preschool entrance and the crowd but as he ran he started shouting at the top of his voice. The shout wasn’t him shouting any words as such. It was the type of shout that I would have associated, before I had Oz, with a child who had additional needs. It was loud. High pitched. Startling. In fact, I’m pretty sure the entire queue of people were now all looking at him.
You see to me, Oscar’s outburst, which by the way, was just him exuding a bit of energy and his way of showing his excitement, was no big deal. It wasn’t intimidating to me, or Flo, who was running excitedly alongside him, but to others, to those who don’t know Oscar, I’m well aware it might have been.
On any given day, I probably wouldn’t have given his little outburst a second thought. But as soon as he did it this time, all I could think about was the lady I’d just met. Who I knew would have been watching him. Who if she’d been anything like me, would have been looking at Oscar and willing him to just to be “normal”. She wouldn’t have wanted to have seen different. She’d have wanted to see that he was ok.
I’d wanted her to see all the things Oscar was capable of. All the things he’s achieved over the years. Things that I couldn’t have even have imagined he would do, back when I’d been in her position.
I HOPED she’d seen the little boy who crossed the road and followed instructions beautifully. The little boy who played excitedly with his little sister, who herself, sees him for him and no different. I hope she saw a little boy who pushes the boundaries with his Mummy because he knows his own mind. And I hope when she thinks about his little outburst that she viewed, for what it was. HIS way of expressing himself. A little boy having a great time.
My message to her and to anyone just starting out on this little road… is that, when I look at young adults with DS, whether it be a stranger on the street or someone on social media that I follow, I occasionally still hold my breath. I still wonder how Oscar will do in comparison. If he’ll struggle the same way they have or be just as brilliant as they are. And as much as I know how we are all so very different, and that all our kids do well in different ways, I often still find myself wondering if he’ll be ok.
The thing i’ve figured out over the years though, is that, when you actually get there… to your destination I mean… whether it be a year on, two years on or five years on, it’s nowhere near as scary as I imagined it would be. Nowhere near.