“Life may not be the party we hoped for, but while we’re here we should Dance”

They say that when you have a child, you become their biggest and fiercest protector. They also say the hardest part of being a parent, is watching your child go through something really tough and not being able to fix it. I think “they”, whoever they might have been, had a point.

This time last year, if Chris or I had been at a party with Oscar, if I’m honest with you, we would have been on high alert. We’d mostly be worrying about him making a break for it. If there was a chance Oscar could get out, invariably he would. We’d always do a check of all exits to make sure there hadn’t been any doors left open, or keys left in the locks. We’d check gardens for holes in the fences because if Oscar wanted to, he’d find a way of escaping somewhere. We’d also have been watching him the whole time because he’d have a habit of trashing other people’s houses. Not in a malicious way… just because it was fun. Dirty laundry baskets would be thrown downstairs with the entire contents of the basket on the hallway floor, plants would have been depotted leaving a trail of soil behind him… in fact wherever he went he’d often leave a trail of destruction. And then of course there was the biting. It had started when he was two, stopped for a bit, then started for a again for a bit. We knew that it was more than likely down to his frustrations in communication, so a year ago Chris and I would have shadowed him the whole time at a party, just incase we needed to step in. It was exhausting, draining and we felt like we never spent any time talking to anyone else at these gatherings. We felt rude continuously saying, “Excuse me, I’ve just got to check on Oz” but it had to be done because more than anything we didn’t want to be those parents that just stood there, unphased by what their child was getting up to.
So last weekend, when we’d taken Oz to two parties, both Chris and I commented that he’s come a long way in a year. We didn’t feel like we needed to watch him the whole time. He didn’t destroy houses. He tried to play with the other kids. He was happy. He was engaged and he was no trouble at all. (Ok he MAY have escaped through the side gate, but we DID get him back unscathed… Oh and Flo MAY have followed him too but for the most part, he’s pretty good these days)
So why if he is so much better than a year a go, did I go to bed after the first party, feeling just ever so slightly deflated? I think I’ve come to realise it’s the “party” thing. I’ve heard other parents of kids with additional needs mention it before (and I’m not for a second speaking on behalf of every parent here as I know that there’s a lot of kids with additional needs who do brilliantly, who have lots of friends and wouldn’t struggle at all socially) but I think this weekend highlighted for me that sometimes, in a party/play situation, Oscar really does struggle sometimes.
Take for instance this first party. All the boys were charging up and down the garden and hiding behind the shed. Oscar was joining in, just about able to keep up, but as I watched and saw that his little brother Alfie was seemingly being the ring leader amongst it all at one point, charging ahead, shouting instructions to all the other kids, engaging in conversation with all of them… I looked and realised that Oscar was silent. He was trying to engage. He was trying to get their attention. But I guess to the other 4 and 5 year old little boys, Oscar’s idiosyncrasies (like the way he stands really close to you to get your attention or hits you on the back in a playful way as he runs past so you’ll look at him) to them, were just a bit odd. I watched as Oscar got a little too close to one of the boys and ended up bumping into him. Then I watched as this little boy turned around, looked him straight in the eye and said  “I don’t want to play with you” and ran off.
A year a go Oscar wouldn’t have given this a second thought and would have more than likely gone after him anyway. But this particular day I watched as Oscar stood there, his face dropped, his whole demeanour appearing to change as he shrunk just a couple of inches. He had understood every word of “I don’t want to play with you”. He’d taken it all in and it had hurt.
I watched as Chris, aware of what was happening too, headed straight over to Oscar and instead of making it into a big issue, encouraged Oscar to run with him and to catch up with the rest of the group which obviously immediately lifted Oscar’s mood. He had a great time after that, and the little boys comment was probably the furthest thing from his mind as he enjoyed the rest of the party. But it stayed with me.
Chris and I talked that night about the fact that we’re really aware of how it is for Oscar in those situations sometimes. How other kids can be. That it must be really confusing to a 4 or 5 year old child whose trying to fathom out why Oscar acts the way he does and why he can’t always answer them when spoken too. It must be just as frustrating to them as it is to Oscar I suppose.
But sometimes I really wish that little kids weren’t so horrible.
At another party the other day, a little girl (whose exactly the same age as him) asked me how old Oscar was. We’d just had a brief conversation about the fact that Oscar could only say a few words at the moment but that hopefully someday he’d be able to talk like her and I. It had come up because Oscar had bumped into her (yep this kid is clumsy) and he hadn’t said sorry. She had come to me to tell me what had happened and that he hadn’t apologised and that’s when I explained that it was an accident, that he definitely would have been sorry, just that he couldn’t actually say the word sorry yet (BTW he can totally sign sorry but more than likely decided not too knowing him). She’d taken it all onboard and that was when she asked his age.
 “He’s 4” I said. She looked at me puzzled.
“Yes but he’s only just 4 because i’m nearly 5” She said (because in her mind I guess that if he were nearly 5 and her age, OF COURSE he’d be able to talk)
“No” I explained, “He’s 4 at the moment but nearly 5 just like you”
And with that, thinking about it for a second or two, off she went.
As a parent it’s hard to watch. The kids not having the tolerance or patience with him I mean. Don’t get me wrong I totally totally get it, but it’s still hard. He tries so hard to engage and can in so many ways… it’s just that the words aren’t there yet and to a 4 or 5 year old, that’s just weird right?.
So as a parent to the child that can’t fight back, when do you step in and say something?
I’m the parent in the park, that’s always standing right next to the play equipment where my kids are playing because they’re either all too young to be left alone or in Oscar’s case, to vulnerable to be on his own without support. I’m definitely not the parent sat on the park bench outside the children’s play area, out of eye shot, chilling out with my coffee and talking to a friend. So I hear everything. I hear how kids are with one another. And I know for a fact that it’s not only the likes of children like Oscar who are told they don’t want to be played with. Kids are blatant. They say it how it is. They talk about who their friends are and who aren’t. Who there BEST friends are, is classic at this age. The sad thing is, this isn’t a new thing because I remember as a child, doing exactly the same thing. I seem to remember being one of those kids too.
But with all that in mind, I’m also the parent in the park that will step in. Whether the child is Oscar or not. If another child is being horrible and their parents aren’t around, I’ll call them up on it. Because well they need to be told right?
Interestingly the second party the next day was different for me. They had a children’s entertainer who was fabulous but fairly loud and for the first part of the party a dubious Oscar stayed close to me. But ever so slowly, as his confidence grew we edged closer and closer to the entertainer and where all the other kids were and although it took him a while, he got involved in the end.
And when I watched really closely (because now in a party situation, I can actually sit and have a chat with other mums because he doesn’t need me as much as he once did), I watched as he danced with some of the other kids, played with a balloon with another little boy and at the end, when the children’s entertainer asked all the kids to huddle together for a photograph with the birthday boy, I watched as Oscar put his arm round a little girl and hold the hand of the boy next to him. And both the girl next to him and the boy didn’t think anything of it and gave him big smiles. As we left the party, it dawned on me that as long as he’s having fun and feeling involved that’s all that matters. And that afternoon at the party, it reaffirmed the fact that sometimes communication isn’t about what you can say. It taught me he can engage without saying anything at all and despite his efforts to say more (and we’re getting more sounds all the time), perhaps for now Oscar doesn’t need words.
One of my biggest worries for Oscar, aside from the lack of speech, is worrying he won’t make friends. Worrying he won’t fit in. People talk about how society is changing and how we’re all so much more accepting, especially the younger generation but sometimes i’m not convinced. Oscar goes back to school tomorrow after a 2 week break for Easter and this evening I busied myself, sorting out his PE kit and packing his bag. His communication book was in there, which is the book that goes back and forth between myself and his TA. It covers anything that each of us might need to know and is really lovely for Chris and I to hear how he’s gotten on each day but as I reached for it, something fell out the bottom of it. It was a note and a drawing from a child in Oscar’s class. I can’t say who it was (as it’d be wrong of me to disclose names) but this little boy had drawn a picture for Oscar and on the back had written Oscar with a love heart and his name. It made me smile. Not because it was a  big deal. But sometimes these little things in their simplicity, are sent to us at exactly the right time we need them.


  1. Karin   •  

    Oh how I remember those days. I wish I could tell you it will become easier but sadly it won’t. As our children become older the gap between them and their same age non DS peers will widen. This is the one down side to mainstreaming their entire school life.

    What you will have to do is maintain a circle of friends who have DS or other learning difficulties. These friends will become life long mates. A few of the mainstream kids will keep in touch for a while. But very few will be life long friends.

  2. ann Kenwright   •  

    I love this blog. I’ve only recently found you but it really struck a chord with me as my boy Jamie who is six and a half is non verbal too, or more or less. He is only just now saying sounds and parts of words…badly! He is being assessed for Autism too, just to throw something else into the mix!
    Frequently I kneel beside him staring and straining to interpret the sounds that he’s making without success. Sometimes I get it right, the other night I realised he was singing Peter rabbit has a fly upon his nose but that was mainly because I spotted him making bunny ears – the tune was non existent lol! But when I started singing with him and he realised, well then he beamed from ear to ear, we both did lol!
    I completely share your anxieties about friendships and the future, it’s very hard isn’t it! Thank you for sharing tho, nice to know you’re not alone
    Ann x

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