I suppose I should commend Oscar for his sense of adventure. And I suppose the fact that he’s determined and independent is a good thing, right? I listen to other parents talk about their children and how they never stray too far from their sides and I wonder why I ended up with three kids, that invariably head off in completely different directions. And although all three of my kids love to explore, there are two of them that get a certain distance away, panic they’re too far away from their mummy and scrurry back but a certain someone else, couldn’t care less how far they wander. In fact they’re far too busy having a lovely time, keeping me on my toes… and yes, you’ve guessed it, that certain someone, would be Oscar.
I’m not sure about you but even without three kids in tow, going through security at the airport makes me a little nervous. The mere fact you have to remember to take out your mobile phone, iPad, perhaps take your coat off and then time it so you walk through at the exact same time your belongings get to the end of the belt, for fear that someone in the line before you might pick up your bits… Well, it stresses me out. Combine that with taking all your own stuff, plus your three kids, all their stuff, your husband AND all his stuff… In those situations, you’re basically screwed.
So picture the scene. You’re about to go through security at geneva airport. Flo is in her baby carrier attached to me, both boys are strapped in side by side in the double buggy. You’ve put everything on the conveyor belt (did I mention they had to check the bottles of milk and baby food I was carrying for Flo too?) and watch it slowly start to be screened. Only at this point, security ask you to take your baby out of the baby carrier AND get the boys out of the buggy, collapse it as it’s too wide for the screening machine and then all walk through the scanner. You can imagine my face at this point. Right.
The boys, clearly thrilled at the prospect of getting out of the buggy, jump out and run through without a care in the world. Chris follows only for the machine to beep. (Of course it does. It beeps EVERY time we go through airport security because EVERY time it’s his flippin’ belt) By this point I can see Oscar and Alfie in the distance, running a muck and about to enter duty free.
Now, I mean this with the greatest of respect but Chris has always been a bit rubbish at doing more than one thing at a time or with any kind of urgency. While he was busy collecting his iPad, phone, keys, bag, BELT etc, having whizzed through the screening, I was basically dragging the kids back to where we were standing.
Flo, now out of her carrier, was equally delighted and having sat her on the floor was herself, about to make a break for it. Thankfully I could wedge her between my feet (where the frig else do you put a baby in those situations????).
“Stand there.” I say to the boys. They laugh excitedly and start to run away again. Obviously, my authoritative parenting voice appearing to work brilliantly in this instance. I drag them back.
“STAND THERE.” I’m a little firmer this time. They do. Right, now to grab all our stuff. I turn round to check they’re still there, Alfie’s stood quietly watching Chris and I, but Oscar’s gone. Panic.
“Where’s Oscar?”. Alfie looks at me like most two and three quarter year olds would, with a look of, am I bothered spread across his face
“Where’s Oscar?” I shout, perhaps a little too frantically/dramatically/like I’m auditioning to be the next Liam Neeson in the next “Taken” movie,
“I don’t know,” Chris shouts back, probably not as loudly as I had done but at this point we’re most definitely causing a scene (because we weren’t before with our out of control kids/conveyor belt debacle).
I run out of security, over to the duty free shop, look right, look left. Nothing. He’s not there. All I see are hundreds of people milling around, without a care in the world but no little dude in a green tshirt and red shorts.
I run back to security, the panic rising
“He’s here,” shout the men and women behind the security desk/screen. All chuckling to themselves, that they have a new friend. In the few seconds I’d turned my back, Oscar had obviously crawled under the security desk and was wandering around their little area, smiling, waving and saying “hiya”. They all thought it was hilarious. Chris even took a photo… but my heart was pounding.
You see the thing is, amongst the DS community, Oscar is what’s known as a “runner”. In talking to other parents of children with DS it’s not uncommon and contrary to popular belief he’s not just running for the sake of running… I truly believe his escapes are calculated. I fully believe in his head, he knows exactly where he wants to go. If a door opens, he out of there, quicker than a flash. We were sat in my mum and dad’s garden the other day and someone opened the gate. Quicker than the speed of light, Oscar was across the garden, squeezing his way under the arm of the person opening the gate, shielding himself behind someone else, hoping he’d go unnoticed. Dad says he must feel a draft, as as soon as a door opens, he seizes every opportunity to make a break for it.
So knowing what we know about Oscar, Chris and I have worked out, that when we’re out and about with him, we have to be on our guard. We were attending a party just a few weeks ago and a whole bunch of our friends were there. We knew that we’d probably end up chatting but said to one another that one of us would be on “Oscar watch” at any one time. This might sound a little dramatic and perhaps at times I go a bit over the top but knowing his ability to escape and the fact that he has a tendency to be a little over familiar sometimes (a polite way of saying he’s been known to bite from time to time) we always like to keep one eye on him.
When we go anywhere new or somewhere we haven’t been for a while, I always do a check of exits/escape routes. That might sound crazy but I honestly do. So on this particular day, discreetly, I had a look round the garden, checking there were no holes in fences or bushes, that gates weren’t open, that he couldn’t get through the garage and then I did the same with the front door. On this particular day I felt assured that there was no way he could make a break. So a few hours in to the party, and while I was on “Oscar watch” my attention was turned away from him for a minute or so while I got Alfie a drink… and then, just like that, he was gone. He’d been playing in the living room, happy as lorry but then the next thing I knew he wasn’t there. I wasn’t too worried at this stage. I suspected he had gone out into the back garden to find Chris. I walked into the garden, had a look round, scanning the crowd but he wasn’t there. Again not to phased, I decided he’d probably followed some of the older kids upstairs as he’d watched them previously and I could tell he’d wanted to go with them. So off I went, scanning the area as I went, up the stairs, opening all the bedroom and bathroom doors, calling his name… But he was gone. Panic began to set in at this point. If he wasn’t downstairs, he wasn’t in garden and now he wasn’t upstairs, where was he? He’s made it out the front I thought, but the door was shut, it was heavy and I surely would have heard it if he’d gone out? I ran down the stairs, out the front door, looked up the street but he wasn’t there either. He MUST be in the back garden I thought, I MUST have missed him. Maybe he was hiding in the garage, as he’d gone in there to have a look round earlier. I ran back inside, through the house, out into the back garden. At this point a couple of people had noticed the panic in my face and started searching too but he wasn’t there. I shouted to Chris that I couldn’t find him, whose gut reaction was to run out the front of the house, while I checked upstairs again. Maybe he was in a cupboard or under the bed? Realising that he definitely wasn’t at the party and must be out the front I raced outside too, heart in my mouth, hot, panicked, willing us it find him… only to see Oscar being passed to Chris by a gentleman and his wife who’d been walking their dog. They said he must have walked out of the cul de sac, crossed a main road as they found him walking on the OTHER SIDE of the main road, “talking” on his walkie talkie. They didn’t know which house he was from but saw the balloons outside our friend’s house and assumed he must belong there. I burst into tears. Relieved, grateful but mostly because I was cross with myself that I’d let this happen. The man who found him told us he was a police officer himself and a detective inspector…
And I cried a little more, not only because I was so grateful he’d been found before he got hurt or taken but mostly because I was so so mortified I’d let him down, when I was supposed to have been watching him.
Oscar was absolutely fine. Completely and utterly unphased. I, on the other hand, was a mess. You play out all the different scenarios in your head, thinking about what could have happened. The what ifs dont even bare thinking about.
But it was the shock I needed. The shock I needed to tell me that I was right to be vigilant and to always check new spaces for him to escape. It turns out I hadnt checked the utility door. A door I assumed opened out into the garden but actually opened out onto the driveway and accessed the street. It was completely my fault. I made an assumption and I was wrong to.
You see the thing is though, sometimes I think some people think I’m being over cautious about Oscar. That I’m perhaps being that over protective mum and who needs to give him the benefit of the doubt more. I think perhaps sometimes I do. I know he’s learning all the time. There was a time when the front door opened to our house, that he’d dart down the street. Now he may run, but nine times out of ten, he knows to run to the car door and wait patiently for me to open it. Or wait by the buggy ready to leave our driveway and walk alongside us.
But there are sometimes, like at the airport or at that party, that I was wrong to ask him to stand still while I collected our belongings and wrong to have turned my back on him at the party, even for a few seconds.
I’ve recently been asking myself, why he does the things and acts the way he does. And I’ve realised, that with his first day of school fast approaching, I’m so conscious of wanting Oscar just to conform.
The other day I got Alfie out the car and asked him to walk inside. I then got Flo out and at the same time Chris got Oscar out his car seat. As we all started to walk into our friend’s house I realised Chris was still carrying Oscar and I whispered to him so that others wouldn’t hear “Chris put him down, he’s 4, he should be walking”. Chris looked at me like I’d lost my mind, clearly wondering why it mattered if he was carrying him or not and as soon as the words came out of my mouth, I knew I was being a d#%k about it. Why did I care so much if he was carried in to a party? Does it really matter? I knew it wasn’t about anything, other than the fact that I didn’t want others to see him as a baby.
Likewise on Oscar’s trial session at school, I recently wrote about how well he did walking to school as I pushed Flo along in the buggy. I wasn’t sure if he was going to manage the walk to school. If the distance was going to be too much for him or it be too much of a challenge for me to manage the buggy and him, he who has little or no concept of danger and who has a tendency to run ahead or step out into the road. And even though it was successful, I realised Oscar walking to school that day was more about ME wanting him to be seen to be normal and to conform. I didn’t want him to sit in the buggy. I mean no one else’s 4 year old would need the buggy, would they? The stupid thing was, (and by stupid I mean me), as soon as I got to school and we were waiting to go in, I realised a lot of 4 and 5 year olds were in the arms of their parents. Obviously feeling apprehensive about their morning, they were having a cuddle with their mummies, while they stood and chatted to other parents. Were THEY bothered they’d had to do that? Of course not. And quite ironically again, as Oscar was walking home, me following with the buggy, I briefly got talking to another Mummy who was battling with her 4 year old because he didn’t like walking and she told me she usually takes the buggy everywhere for this very reason.
I’ve realised that my behaviour recently has been ridiculous and I just need to get over myself and stop worrying how things look to other people. Does it really matter as long as my son’s safe? He needs us at the moment. To shadow him, to watch him, to be his eyes and ears, I guess. He’s unpredictable. We can’t guarantee how he’ll behave or react in certain circumstances. We get that and are mindful of that. This is just the way it is at the moment but I’m pretty sure it won’t be like this forever. Having young children is hard work. Having young children, one with additional needs, can at times be harder than I first imagined. Not because of the DS but more because of the pressure you put on yourself as a parent, to be the best parent you can possibly be for them. For now all you can do is hope. Hope you’re doing your best. Hope they will learn what to do and what not to do. And hope, that although at times your heart pounds with panic and your nerves are shot to bits, you hope your little boy will always have the same adventurous passion for life that he shows now. Without that, life would be terribly boring, surely? ;0)
“It’s Oscar. Hi Oscar,” I heard a little voice shout over the noise of the preschool room. We’d just walked through the door and the boy who’d noticed us walk in came over and he and Oscar greeted each other with a big hug. It was a lovely exchange and made me smile. I realised though that I hadn’t seen the little boy in the preschool room before and considering his size I decided he was probably just starting in that room, and knew Oscar from when they used to be in the younger children’s room. As I left them to it, I also noted that it had been a long while since Oscar had been greeted that way. I mean sure, he always gets a warm welcome from the staff but it dawned on me that the kids his own age, the kids all fast approaching school age, didn’t seem that fussed by Oscar anymore. Not like they used to be anyway.
And don’t get me wrong, it appears Oscar couldn’t care less. He always strolls in confidently and happily, hangs his coat and bag on his peg (with my help, of course) and then off he goes. He doesn’t seem phased in the slightest that none of the other kids are in the least bit bothered by him being there… It’s just me. Over sensitive, over protective me. Because here’s the thing; while I know Oscar has friends, I can also sense a shift in those friendships since his mainstream typical peers have started to grow up and Oscar, although doing well in so many areas, has in some areas started to lag behind.
I’ve heard the phrase “Our kids are more alike than different” a lot recently. It’s in reference to the fact that children with Down Syndrome are much like their mainstream typical peers. I think this is true in a lot of ways. Oscar is cheeky just like most other (almost) 4 year olds. He’s inquisitive and adventurous, caring and sensitive to how you’re feeling, determined but defiant just as much as the next kid. But in a lot of ways, he so very different from his typical peers and of late I can’t help but pick up on this.
I’m not saying always, but sometimes, he acts differently than the others kids do. When he’s upset or unsettled he chews on his fingers and cries. When he’s excited, he runs in circles doing his breathing in and out of his nose thing. When he’s cross he head butts doors (seriously, I won’t bore you with it now but the head-butting thing is a whole other issue for another day). When his brother Alfie falls over, instead of helping him up, like other 4 year olds might, he drops to the floor dramatically himself. He doesn’t always act like a “typical” little boy and that’s because he’s not.
You see, I kinda feel like we’re at this in-between stage. When he was younger, other kids his age had no idea he was any different to them, but now he’s older and friends his age have become more aware, it’s suddenly really obvious to me that they see him differently.
The other day at a friend’s house, Oscar, a couple of his friends his age and a 19 month old were playing in the kitchen. The oven was on and knowing a certain someone was not to be trusted, I walked in and told them that perhaps it’d be a good idea if we all went to play in the living room instead. To which one of the little boys (Oscar’s age) turned to me and said “Yes, the babies aren’t allowed to play in here either.” And just like that, I realised that he was referring to the 19 month old but also referring to Oscar as a ‘baby’. In his eyes, because Oscar’s not able to talk to him like his other friends can, he’s classed as a baby. Simple as that.
And I get it. To an almost 4 year old, when a child that’s a little bit smaller than them in stature, still in nappies and doesn’t have the capability to engage in conversation about the latest Paw Patrol episode they watched, in their eyes, of course they’re younger than them.
When Oscar and his friends are all playing together, sometimes he plays beautifully but other times he might decide to tip the entire contents of the toy box onto the floor because he knows it makes a great big noise that he quite likes. When this happens the other kids his age, just look on in bewilderment. And when Oscar decides that he’d quite like to join in the girl’s role play game at nursery, when they all lie in their makeshift bed, with heir blankets over them, sometimes Oscar decides to take off all the blankets and run away with them, laughing to himself. When this happens Oscar is met with shouts of “Nooooooo Oscar. Stop it. I was playing with that first”. And every once in a while, when Oscar decides to give his friend a hug because, well, he’d quite like one, he just goes in for the tightest longest hug imaginable, leaving his friend looking at me, with a “Please save me” look in their eyes, because it’s kinda squishing them. You see, Oscar doesn’t always get that tipping the contents of the toy box on the floor is just annoying. And stealing the girls blankets? Yeah, so not cool. Oh and the tight hugs? Oscar hasn’t quite grasped the whole personal space/boundaries thing yet. We as adults get all of the above but to an almost 4 year old, although they might like him and find him loveable at times, at the moment, mostly I think they find him kind of annoying.
It’s not just the 4 year olds though. Oh no, even Alfie, my two year old has started looking at me slightly puzzled at some of the stuff Oscar does. And he’s only frickin 2 for goodness sake. And the truth is, I don’t blame them. I don’t blame any of them. I totally and utterly get why they’d react that way. Hey, when Oscar does some of the things he does, I myself raise an eyebrow too.
It’s interesting though because the other day we were in the park and some older kids, I presume around 7/8 years old took a shine to Oscar. He stood there watching them play for a while, then started laughing at them because they were jumping off the climbing frame. The more Oscar laughed, the more they played up to him. The jumps became bigger. The pretend falls to the ground became more melodramatic. And the more Oscar dissolved into fits of giggles, the more attention they paid him. They helped him as he climbed up to join them and talked to him and even though he couldn’t talk back, they didn’t seem to mind. They accepted him just as he was, regardless and as we moved away, I heard the two kids say to each other: “Aaaaahhhh he was so cool and funny wasn’t he?”
“Yeah so cool”
My point being, when kids are a bit older, they might “see” different, but they’re ok with that.
So I’m wondering at what age should the whole DS thing be brought up? A while back I thought it’d be much later down the line, but I’m thinking now it might be earlier. Some people might be of the opinion that nothing needs to be or should be said. Some think the sooner the better and others might say wait til they ask. There is a part of me that thinks, children Oscar’s age are just these small, little people who couldn’t possibly understand but then there’s the other side of me, the side that hears a child refer to Oscar as “Naughty Oscar” that feels it might be best to sit them down there and then and explain that it’s not that he’s naughty, just that it takes him a little longer to understand.
A few weeks back it was World Down Syndrome Day and on that particular day, a whole bunch of us were going round to a friend’s house for lunch. My friends had suggested we all wear our mismatched socks including the kids and as I arrived I was so incredibly touched that all of them, every single one, had remembered to put their brightly coloured socks on. I had wondered though, had the kids not questioned why they were being asked to put on odd socks that day? Did they not think it was ridiculous and want an explanation? I asked my friends. A couple said that their kids hadn’t even noticed. Another said that she made a game out of it and said: “I know, wouldn’t it be really funny if we all wore different socks today?” Which was met with a giggly “ok”. But then there was one other. The little girl who I’d have said would be the kid who’d have questioned such silly antics. So when her mother said that they were to wear mismatched socks today, her response was of course: “but why, mummy?” “Because it’s World Down syndrome day and Oscar and his family celebrate it.” She thought for a while and then she asked, “What’s Down syndrome?” Her mummy, a very dear friend of mine, is more than capable of explaining it to her little girl but said rather than launching into it there and then, deflected the question and said to me she’d wanted to check with me first, as to what I’d like her to say.
So here’s the thing… What DO I want her to say? What do I want any of my friends to say to their children? What do Chris and I say to Alfie and Flo when they’re old enough? What do they then say it their friends when they’re asked the question, “How come your brother looks, talks and acts that way?” At what point do I want them to say it? Today? Next month? Next year? In a couple of years? I’m not sure. Some children, like the little girl who was puzzled by the mismatched socks might be ready for that chat now, others may not understand yet.
When the time’s right though, I think I want them to say that Oscar is a little boy just like them. He’s a little different to you and me but that that’s ok. I want them to say that just because he acts the way he does at the moment, they must try not to get cross and try to be patient if they can. That things just take him a little longer to understand, but that he’ll get there in the end. I’d like them to tell them that he may find some things harder than other people do but that perhaps there are some things they might find difficult in their lives too. Not everyone’s going to be good at everything after all. What I would love them to tell them though, is all about Oscar’s strengths. That he’s brilliant on the trampoline and on his scooter. That he can run super-fast just like they can. Oh and when they’re feeling sad, Oscar will notice and he’ll give them the biggest hugs. And finally, that just because he can’t talk to you at the moment, doesn’t mean he never will. One day hopefully he’ll be able to tell you exactly what he thinks of Paw Patrol.
I’m guessing my worries are heightened because later this year Oscar will be starting school. I know he’ll be supported well, as thankfully we have the 1:1 hours he needs, but I worry about friendships forming. Will he make friends? I know in his own unique way he’ll be able to communicate with his classmates but will they have the patience to persevere? All any mother wants for their child is for them to be liked. A friend and I were talking recently and we said that none of us can tell our children who to be friends with or who to like. They’re going to make up their own minds… Even at the grand old age of 4. All we can do is hope that they find their own way in life. She also said she hoped Oscar would be in her daughter’s life always. I said I hoped so too.
A few nights ago my sister Clare sent me a photo of my niece Bella standing next to a poster. The poster had on it some of the images of the photographs taken at the “This is me” exhibition (the charity we belong to had put on as part of WDS Awareness Week) and amongst those images was a photo of Oscar. Bella had asked my sister if she could have the poster. Clare had said, “of course but why do you want it?” To which Bella replied “Because I want to put it up in my room and show all my friends my cousin Oscar”. When I read the message from my sister my eyes welled up with tears… Bella is 4 years old. Not so long ago I asked my sister Clare if Bella understood about Oscar not being able to talk that well (yet) and she replied with the following…
“She often now notices people who have Down Syndrome and will say, he or she is just like Oscar aren’t they Mummy?… And when I say, yes and what is it that Oscar has, she doesn’t say Down Syndrome, she always says “magic” because he’s just that extra bit special isn’t he?”
I’m not sure she completely understands the whole DS thing but what I do know is that she loves him despite the fact that he ruins their games sometimes, takes a toy off of her that she’d been playing with or gives her hugs that are just that little bit too tight. In spite of all those things, she truly, truly loves him. We CAN’T tell our kids how to act, feel or who to like (and I would hate for them to feel forced to be friends with him) but I hope that one day, his peers will understand just what he’s about. A little boy more like them, than different, sure… But someone that they want to be around, regardless.
Woooooooooow!!!!!!! I kid you not, ladies and gentlemen, she honestly and truly said that. A 40 something year old, well-educated woman, asked if Oscar’s Down syndrome was now cured! I mean honestly???? Trying hard to stifle my amusement I explained to her (kindly) that the Down Syndrome is something that would never be cured and I was ok with that.
“I thought I would have to teach my child about the world. It turns out, I have to teach the world about my child.”
It might be the January blues or it might be because I’m on a diet (which, I’ve decided, is quite possibly THE most depressing thing in the world) but of late, I’ve been feeling a little low. I’m not one to dwell on doom and gloom, preferring to look on the bright side of life, but sometimes, you can’t help the way you feel.
Chris and I can’t walk past our local playground these days without Oscar or Alfie shouting that they want to go and play, so as I walked past earlier this week, having only Oscar with me, I said we could go in. It also happened to be around the same time as the local primary school had finished for the day, so it was mega busy. Oscar burst through the gate, clearly delighted his wish had come true and proceeded to run around, asking me for help (albeit in his own way) when he couldn’t quite manage something. He was excited. Perhaps a little over excited and I’m going to say something now that I hope doesn’t offend anyone, but he was doing his “excitable Down Syndrome thing”. Now, I by no means mean that all kids with DS do this, but it’s just something that Oscar has always done. When he’s excited he breathes in and out of his nose really REALLY fast. As I said, he’s always done it, from a very young age… But now that he’s 3.5 years and other kids who are 3.5 years don’t act this way, it’s really obvious that it’s his “DS thing”. So he was doing this and all of a sudden I felt people looking at him. To be honest with you, I haven’t felt this for a long time (the looks, I mean) but I felt their stares. Groups of women were looking over. Some were smiling, some were doing that sideways look, where it’s like they’re pretending not to but they obviously are and don’t want to seem rude and then some were just blatantly staring. Perhaps they were intrigued, perhaps they’d never seen a child with DS in the park before but all of a sudden I felt very alone. Normally one to hold my head high, it seemed I couldn’t that day. Instead, after a few minutes (and because it was also absolutely freezing) we left. To add insult to injury, Oscar, who didn’t want to leave, did that “I’m going to go crazy” thing and wouldn’t go in the pushchair, ridged and defiant and all I was thinking, is that the women were thinking “aaaahhhh look at her with her special needs son… how sad”. And I hated that I was thinking that.
Which leads me to the title of this piece – “I thought I would have to teach my child about the world. It turns out, I have to teach the world about my child.” Am I really going to have to spend the next however many years, explaining who my son is and why he does the things he does?
I was cross with myself that evening. Why had I reacted like that? I guess some days, regardless of how strong a person you normally feel you are, sometimes there’s no fight left in you. I think that day, I was tired (I blame the lack of sugar) but I was cross that I’d let others get to me.
There is no doubt that Oscar’s communication is really coming on. We have had a few more words recently and his signing is evolving all the time, but as far as speech is concerned, he’s definitely an “I’ll do it in my own time” kind of a kid. It doesn’t worry me as such, as I’ve heard from others that some kiddies with DS had little or no speech at this stage and then once they started school, they took off… But I can’t help but feel sad from time to time when his frustrations come into play. The other day we had a few of Oscar’s friends round to our house. They’re all “typical” kids and have known Oscar for a while now. I take an interest in how they play. Some play in pairs. Some play alone. But sometimes I watch and see that Oscar tries desperately to join in but can get left behind. This particular time, one of the boys gave Oscar a toy to play with. It was a kind gesture so I said to Oscar, “Say thank you”. I always say “say” but for the most part he can’t actually “say” what I’m asking him to, more often than not, he’ll sign what I’m asking. In this case he did just that. But the little boy he was talking to turned to me, looked me straight in the eye and said “Oscar can’t say thank you because he can’t talk yet”. He was right. He can’t say “thank you” yet. And I guess in contrast to his other friends it would appear that he can’t say much at all. But that kid floored me. I mean, it was like a punch to the stomach. The cold hard truth delivered by a 3.5 year old. He was absolutely right in what he was saying but my god did it hurt.
I’m guessing his Mummy, my lovely friend, had spoken to him about the fact that Oscar can’t say much yet. I’m guessing she did indeed “teach” him just that. I found myself that day reiterating what she had probably already told him, that he will talk one day, we hope, and that it’ll just take him a little longer. There I was again. Teaching the world (a 3.5 year old) about my child.
And I’ve promised myself not to do the whole comparison thing. I don’t know how many blogs I’ve written over the past two years, where I’ve given it the “I’m not comparing anymore” line, but how can a parent not? I feel like it’s been heightened even more recently, as since Alfie’s turned two, his speech is coming thick and fast. I mean obviously I’ve never had a “typical developing” child before (and believe me, I’m not saying Alfie’s the next Einstein) but my goodness, how the hell does he know all these words? I have sat with Oscar through endless therapy sessions, practised our words and matched our pictures. HOURS!!!! And then Alfie swoops in and just says things, just like that. Things that I haven’t even taught him to say. Like “moon”. We got out the car after nursery last night, he pointed to the sky and shouted “moooooon”. WTF? How?
I’m pretty sure though, adding to my blues, is all the talk about the NIPT test (Non-Invasive Prenatal Testing) that is now being offered on the NHS. Don’t get me wrong, I can see that bringing in the test will save a lot of babies and give people the answers they have been wanting but equally it makes me sad to my very soul to think that babies like Oscar, will be aborted simply because there’s a lack of education and knowledge on what having a child with DS is actually about. It feels as though our kids have been targeted here and in some countries they’re expressing their bid to eradicate babies being born with DS. Just so unbelievable. Which begs the question, would it really be that bad to have a baby with Down Syndrome?
Something I hadn’t been aware of before now, is that legally in the UK, if you are expecting a baby that has been diagnosed with Down Syndrome, you are entitled to an abortion up to 40 weeks. 4-0 weeks!!!!! Full Term!!!! I mean seriously? What does this say about having a child with DS? No wonder people are petrified if this is the message this country is sending out as being acceptable. It basically says that my sons life is worthless and holds no value. And that, I find completely heartbreaking
Perhaps I felt sad in the park that day because of how the NIPT test has been portrayed in the media. I mean, had the ladies in the park heard the news and were now looking at us and feeling bad for us as a family, because if they were, they really mustn’t. I wanted to shout at those ladies watching my son play, that he’s just having fun and instead of being able to shout “Mummy look at me”, like their kids might be able to, he stands at the top of the slide and excitably does his “Down Syndrome thing”. They mustn’t pity us, they mustn’t pity him because he’s truly, truly loving life, as am I.
I wrote recently about when it’ll be that I can stop worrying about Oscar running off, when he’ll understand the dangers, when he’ll just stand still. I follow other people’s blogs and sites who have kids with Down Syndrome, some that are that little bit older and there’s definitely a fine line between preparing yourself for what lies ahead and knowing just that little too much about what the future might hold for us… but truthfully I take comfort in those blogs, that we’re all in it together.
What I do know, is that I have never come across another parent of a child with Down Syndrome who leads anything other than a normal, happy life. Sure, there are challenges but then there are in life regardless, right? And the quote’s right, I AM teaching the world about my child. I have to. I owe it to him to show others just how great a life he leads because had we got a prenatal diagnosis just over 3.5 years ago, I wouldn’t have been able to see how our lives would be because fear of the unknown would have gotten in the way. I guess I am still teaching him about the world too. Albeit slowly. He’ll get there eventually. But more importantly than teaching the world about my child, he’s teaching me things every single day… and for that i’m thankful.
This morning I received a letter. A letter that quite honestly made me feel sick to my stomach. The letter was from the local authority, letting me know that Oscar had been turned down for an EHCP (Education Health and Care Plan) assessment and was asking whether we want to appeal or take it to a tribunal. Oscar is due to start school next September (2016), which has come round so quickly. The letter was referencing the EHCP process, which is the new name for the “Statement” that used to be issued to a child. We’re doing this now, to ensure that he has a 1:1 Teaching Assistant in place for when he starts school. The whole process is all about gathering enough evidence from his therapists, professionals, ourselves as his parents and/or anyone else involved in his life, to try to prove to “Education” why he needs that support. What the letter means, in short, is that because Oscar’s needs are currently being met at the nursery he’s at, an assessment is not required. The lady who wrote the letter is Oscar’s Case Worker and someone we met a couple of weeks ago at a meeting that we had at his nursery. Oscar’s Case Worker, the nursery, Chris and I decided that it was too early to do an assessment now because we wanted to leave it as long as we possibly could to get a more realistic evaluation of how his development is likely to be when he starts school and we were told to reapply in a few months’ time. There was no mention of this in the letter which, if I’m honest, has worried me.
I’ll start from the beginning…
Like most parents of a little one approaching school age, around this time of year we’re supposed to start thinking where we’d like our child to attend. For some it might be quite straight forward – Are they in the right catchment area? Has the school got a good Ofsted (Office for Standards in Education) rating? I think in most cases though, where to place your child is not a decision parents take lightly, but when you add in to the mix that you have a child with Down Syndrome or any other additional needs, it can raise a whole heap of questions and concerns… Oh and a ridiculous amount of form filling and paperwork!
Parents of a child with DS have to decide from the outset, about whether to send their child to mainstream school or a special school. I have found it interesting in speaking to a number of friends and acquaintances recently, that when I’m asked if Oscar will be going to mainstream school or the alternative, it’s said with caution and, well, super tentatively. I don’t mind the question. It’s a completely valid one after all. But I do wonder why they ask it with such caution. I guess no one likes to automatically assume he’d be going to mainstream school. Perhaps people ask the question with the same mind set I had back when I went to school. That there just weren’t people with DS in mainstream education or very few at least and by that token, perhaps they’d be surprised (and I hope pleased) to hear that between 80-90% of children with DS start out in a mainstream school these days.
For our kids, as you know, it’s all about early intervention and the fact that there is proof that with the RIGHT support, children with DS are learning to read and write for example, just as their peers do, even if it does take that little bit longer. There is masses of evidence to suggest that putting kids like Oscar alongside their peer group, it helps to aid their development. It’s my hope that in doing so everyone involved will have a greater understanding of DS and other learning difficulties and any preconceived misconceptions will be wiped out… Eventually… I know this is still a work in progress even if it does take a few more years to filter through.
We know that our kids respond better to a visual learning style. We also know that visual processing and visual memory skills are a strength of children with DS. That’s why there’s proof that reading is usually a relative strength. We know that social understanding is something that our children are good at and that non-verbal communication, such as Makaton, is an area they excel in. We know that there is more than likely going to be specific speech and language delay. Their receptive language is usually superior to expressive language and that their auditory short-term memory and auditory processing are areas of weakness.
In considering all of the above, if the school is aware of all of this and the teaching assistant is good at his/her job (working alongside Oscar’s therapists and myself in setting him targets to achieve greater things), then the process of inclusion will absolutely work.
I had all this in the back of my mind when Chris and I first started thinking about Oscar’s education and what would be right for him. It’s our hope that he will attend a mainstream school and perhaps naively at first, in my quest to find the right setting I thought inclusion and integration would be the ethos of every mainstream school. I was mistaken.
Our local primary school, that we’d always hoped Oscar would attend, has turned out to be our first choice. There are other schools in the area which we liked too and we are so pleased we have options to consider. However, there was one in particular, also close to us, who advertised “inclusion” who honestly couldn’t have made it any clearer that they didn’t want Oscar there. I guess as parents, you have a few filed questions that you bring out, when testing whether a setting is the right place for your child. I said that with Oscar being a summer born baby (July), he will only just have turned 4 when he starts school and while I will do my upmost to have him dry (toilet trained) the likelihood is that he’ll still be in pull ups. My question was about the provisions the school would make, should he still be in pull ups. I’d hoped she’d say that it wouldn’t be a problem and that they’d have facilities to change him. But the response of this lady, who by the way was the Assistant Head Teacher and SENCO (Special Educational Needs Coordinator), was that “with him being a summer born baby, you know you can defer his entry”. Of course I knew this but it angered me that she hadn’t answered my question. I had asked what provision they’d make for his toileting, not to be given an excuse as to why he shouldn’t attend. The rest of the meeting went kinda along the same lines. I had walked around the school and seen a little boy with ear defenders on (who she pointed out had autism). He had his back to the class, his head in his hands and was sat quietly on his own. She said he that he got quite overwhelmed at times so that’s why he was there. If this was their idea of inclusion then in that very instance I knew this wasn’t the place for my son. Anything I had asked that day, I got a sense that Oscar would have been a burden for them. I left feeling sad but mainly very cross that they had given it all the spiel about integration and inclusion, but the reality was, they blatantly didn’t want him. I’m only glad they were so obvious about it because it made my decision about where not to send him, far, far easier.
As for the letter I received this morning? I have been trying to get hold of the lady who wrote it all day. I want to let her know that just because Oscar’s needs are being met in nursery at the moment, it doesn’t mean he shouldn’t be assessed for how they’ll need to be met at school. I want to let her know that I won’t just sit back and accept this because Oscar (and others like him) have the right to at least try in mainstream education. I will of course be polite and make sure I am well read on the process before I act but I want her to know the effect that her letter had on me and how I won’t rest until Oscar has the hours of support in place that he requires.
A lot of children with additional needs, who’ve started school this year, have done so without an EHCP in place, mainly due to all this being a new process that everyone’s trying to get to grips with. The schools have had to appoint TA’s, at a cost to themselves, because having accepted a child with DS into the school they feel they have a duty of care to make sure that child is well looked after. We were told by various professionals to submit our form in September (which I did) only to be told it’s too soon to apply. I worry that like the school starters this year, we will miss out because now the submission will be too late.
We have been told that Oscar, and children like him, could have anything from 13 to 33 hours support a week so it’s very varied and obviously dependent on each individual child’s needs. It’s my hope that Oscar has full time support (or as close to it as possible) as 13 hours (the minimum) in my opinion, just wouldn’t be sufficient.
Oscar started his visits to the preschool room at nursery last week. By all accounts, it’s going well but his Key Worker said to me this morning that he’s very excitable and in to everything. It’s very hard to decipher what exactly is just Oscar, a three year old boy, exploring his new surroundings and what’s the DS. I was told that now that the snack table is on show the whole time and readily available to him, he keeps playing and then going over for another snack and because the snack table has the knives out, he had a tendency to go over and play with them too.
Now we’re faced with making a definitive decision about where to send him, a whole heap of questions are flying around my head at the moment – will he cope in mainstream school? It’s hard to imagine Oscar ever “calming down” and not being quite so excitable but then I have to remind myself that some of my friends felt exactly the same way about their child who has DS, when they entered mainstream school and they’re seemingly doing well. The thought of him conforming and doing what he’s told is daunting but I know he’ll get there in the end. Should I keep him back a year seeing as he’s a summer born baby? Perhaps with an extra year in preschool and him then being one of the oldest in the year, would mean that the gap in development wouldn’t be quite so wide? Should I send him to a Special school instead? If I did, surely I wouldn’t be giving him the opportunity to at least give mainstream a try. Would I be doing him a disservice by not trying or would I by sending him and he won’t manage? I don’t believe there is a right or wrong answer as far as special or mainstream is concerned. All you can do is select the school that is right for your child, they are an individual after all. Every one of us has a right to an education and as long as Oscar is happy, I’m happy. That’s surely all there is to it.
It’s with the right support in place that Oscar will thrive. He’ll be allowed to learn, explore, watch others, socialise and integrate just as any other little person will do as they start school. I just hope that the EHCP process is concluded as quickly and as painlessly as possible. I’m thankful for the parents who’ve been there and done it and are sharing information to help people like me. I thank my friends who are currently going through the same thing and who have given me a kick up the butt to get things moving… Without them, all this would be a lot more daunting.
I was told last week that the Local Authority make it harder for us because there are always going to be parents who sit back and accept what they’re given, even if it’s not enough for their child. They are relying on the fact that some people will do just that, even if the hours of 1:1 they’ve been issued are too few to give their child the attention they need. I’m not going to be one of those parents. I simply can’t be or else I truly believe I will have failed my little boy.
“Tell me and I forget, teach me and I may remember, involve me and I learn” Benjamin Franklin
Last week a woman, Ursula Presgrave who “stars” in the UK TV show, Call Centre, caused outrage, by saying that “Anyone born with Down Syndrome, should be put down because it’s just cruel to let them lead a pointless life of a vegetable”. She posted this on her Facebook page which lead to a barrage of people describing her as vile, sick and attention seeking.
Here’s an open letter to Ursula from myself…
I guess by even giving your story the time of day, I am adding fuel to the fire and satisfying the attention you seem to desire but I can’t let this pass without a mention. It’s my belief that there are always going to be people out there that say bad stuff. Stuff to cause controversy and to spark a reaction. The internet is plastered with it. I usually don’t comment, choosing not too because it seems that every few months or so, there’s someone saying something derogatory about DS, just as you have and why waste my time and energy.
This becomes harder however, when people like you say such hurtful things. Is it because you genuinely believe that people born with DS lead the life of a vegetable? (I’m not sure here what angers me more, you thinking they do or the fact that you’d refer to anyone as a “vegetable”???). Or does it come down to one thing here? Is it down to your lack of education on the subject.
I’ve heard some say, you work in a call centre, what do we expect? Do any of us truly believe you’ve been educated well in the first place, if that’s your background but to me that would be stooping to your level, belittling who you are, your life and upbringing and that’s just not my style.
What I’m talking about here, is the fact that you probably haven’t had the pleasure of being around anyone with Down Syndrome. You have probably only seen people with DS looking from the outside in and formed an opinion from what you THINK you see. Sadly, you haven’t seen how children like Oscar have so much to offer society and just how capable they can be. You haven’t had anyone like Oscar in your life, who potentially could have taught you more about love than you ever thought possible. Oscar has had a huge impact on our lives as a family, bringing us closer together, feeling the outpouring of love an acceptance from those family members and friends alike. I know for certain you can’t have experienced that, for if you had, you simply wouldn’t say the things you have.
So with that in mind, I pity you. I feel sad for you. As through your lack of education and dare I say it, ignorance about Down Syndrome, you’ll never see the beauty in people like Oscar.
This weekend I attended the MAD BLOG AWARDS in London. To my surprise and utter delight I was a finalist in the Blog Of The Year category and went along to the event. It was a fab evening, the chance to meet like minded bloggers from all over the country. Meeting new friends, catching up with old friends, it was great. I didn’t win this time but what I did come away with was something that resonates with me now as I ponder your statement. One of the category’s was “Outstanding Contribution”. This category was full of women, talking about their life experiences. Hardships they had had to face… Illnesses, loss of loved ones, disabilities etc. Blogging had been giving them a platform to talk. To have a voice, to be heard and to educate on their chosen subjects. Those women were doing great things, the opposite of what you have done on your platform here as a “celebrity” Ursula.
I’m pretty certain you don’t read my blog or indeed others like it. For the people reading my blog and “liking” my page, aren’t the ones that need the educating. But if my readers continue to like and share my posts, then perhaps some good can be done after all. That’s why today, as I sit here and write this, it’s my hope that if one person reading this thinks that Oscar has a “pointless” life, they can now see that actually, he’s got a great life. He’s not a burden on his family or something to be sad about. He’s not a “vegetable” as you so eloquently put it. He’s a little boy, whose loved and leading a full life to the max.
I wonder if you can say the same about your life Ursula? I doubt it. And that makes me very sad.
You’ve got your hands full – quite possibly the most annoying overused phrase known to man. Or perhaps it’s just me, as most annoying to “all men” would be an over exaggeration but you get my gist. I’m talking about the woman in the chemist, the next door neighbour, the man walking his dog on the street, the midwife, the health visitor, the postman. “You’ve got your hands full”, always accompanied with a little laugh, like they seriously think they’re the first person to come up with this revelation. Or perhaps with an all knowing gasp, as in “you had three children, you nutcase? I stopped at 2 kids as that was bad enough”. Never one to offend or be rude (I hope) I politely reply with the obligatory chuckle, along with “yes, I know”, when in actual fact what I REALLY want to say is: “No s#%t, Sherlock!”
I appreciate this makes me sound as if I’m having a bad day and I promise you I’m not. If anything, it somewhat bemuses me. For truthfully, everyone’s right in what they’re saying. I HAVE got my hands full and like everyone pre-empted when I was pregnant, it IS hard work. And here’s the thing. So far, aside from being pretty knackered from the sleepless nights and the all-time low of not showering and using a baby wipe to “freshen up”, you know what? I reckon I’m doing ok. I mean I’m never gonna win mother of the year, mind you, but I’m doing ok.
Anyway, I have had some lovely messages from followers of our blog and page, sending their congratulations and asking how we’re getting on. So I thought it was about time for an update.
Rather ridiculously, we moved house when Florence was 10 days old. It was, of course, meant to happen months beforehand but hey, these things never go to plan, right? I had a planned caesarean so other than trying to manage the unpacking AND the children, we got through it… With lots of help from family… And copious amounts of wine. Wine has helped a lot. Oscar is totally in love with Florence and will often go and sit next to her chair and stroke her head or hold her hand. Alfie on the other hand, is not. He ignores her the whole time but every so often, if I’m feeding her or holding her, he’ll give her a little tap. A tap or put a bowl/blanket over her head, whatever mood takes him. I’ve said it before, but every day is survival. If we’re all fed, watered and happy at the end of the day, then we’ve done well. Sometimes, I do feel that with having three kids, one of them is always missing out. If I spend too much time playing with the boys, Flo’s neglected but then equally, if my attention is turned to Flo for too long, Oscar and Alfie are more than likely getting up to mischief together somewhere in the house or garden.
You see, I’d say right now, Oscar and Alfie are pretty well matched. At just over 16 months apart, I reckon both physically and developmentally, my two little pickles are now almost on a par.
I wonder if my house will ever be tidy again? Will I ever make a meal from scratch? (not that I ever did but I might one day, right?) Will I ever sit down in the evenings and relax again? Around 5pm Flo decides she doesn’t want to be put down and fusses/feeds constantly (a hard time of the day when you need to get two boys their tea and ready for bed) so all hell is always in danger of breaking loose. At 7pm, the boys bedtime, I’d always had my “me” time. My time to spend talking to Chris. Now, I have Flo, still fussing and feeding until she finally gives in and goes to sleep, my evenings are the furthest thing from peaceful.
I’ve come to a realisation since having Flo. And I’m guessing it’s because I’ve been trying to juggle looking after a newborn and two toddlers, that looking after Oscar, as lovely as he is, requires just a different level of care to the other two. He is literally always on the go.
And I know a lot of people are going to say, he’s three, Sarah. This is normal three year old behaviour and they might be right. But just recently, having had days where I have either just Oscar and Flo (because Alfie has been in nursery) or just Alfie and Flo (because Oscar’s been in nursery), on the days I have had Oscar, I realise I can’t ever really let my guard down.
Not to say that Alfie’s easy. He’s not. He understands exactly what I’m telling him or what I ask of him. He tantrums like the best of them and if left to his own devices, would run off at the drop of a hat. He might say a few words now but equally he gets frustrated that I don’t always understand what he’s trying to tell me. He acts, I suspect, just as any other 21 month old might do but I think the difference is that I can read Alfie a little better, whereas Oscar’s just that little more unpredictable.
Although Oscar understands what I ask of him, sometimes he gets side-tracked. I can ask him to go and get his shoes but if there’s something on the way to picking up his shoes, that takes his attention, then the shoes are forgotten. His energy levels are high and at times, managing that energy can be tough. And that’s not to say he’s not doing well but I’ve realised there are a lot of things he still does, that other three year olds have grown out of. For example, if I’m not looking, he’ll sit and take out all the baby wipes from a packet, just because he can. Or if we’re in the park, I have to shadow him the whole time, just in case he runs out of the gate and darts across the road. And if for a moment I do take my eyes off him, even for a couple of seconds, he could just decide to lie down in the park and lick the tarmac, which I found him doing the other day! Again, just because he can.
What I’m trying to say is that, yes Alfie is a handful at the moment but if all goes as it “typically” should, he will grow out of it. We won’t always have to watch him as closely as we do and in time, we can relax. Yes Flo is a newborn and needs and relies on me for everything, but again this will be over in the blink of an eye. Which leads me to wonder – will Oscar always need to be watched? I’m sure he won’t but I guess it may still be quite some time before we get there. It seems a while off before I’ll be able to go upstairs and leave him downstairs without worrying that the kitchen door is definitely shut so that he can’t go into the drawer with the knives in it or open the front door and wander (run) out while I’m not looking.
I know all parents worry about their children’s welfare and this isn’t meant to come across as doom and gloom but I guess it’s about looking at the facts. I have three children, three years old and under, one of whom has additional needs and who needs me to be his protector. It’s not about wishing the time away, because believe me, every evening when Flo’s having her fussy five minutes (hours), I look into that little face of hers and try to soak up every second because I know she won’t be this teeny baby in my arms for long (and because seriously, I give you my word, there will be no more Roberts babies that’s for sure. I.am.done). And when Alfie’s having a meltdown because he wants to watch Peter Rabbit on the TV and not the episode of Postman Pat I’ve put on for him instead, I try to keep calm and remember it won’t be too long before he can tell me EXACTLY what he wants.
But with Oz, for how brilliantly he’s doing, I realise, for him and I, time moves a little more slowly. I want him to stay small so I will always be there to protect him and not have to think too much about the future and what lies ahead for him but sometimes, if I’m truly honest, I wish it was just that little bit easier. Not just for me, but for him.
I always knew having three would be hard and although Oscar and Alfie are pretty equal at the moment in the amount of care they need, albeit in slightly different ways, I guess I know that with Alfie it’ll probably pass a lot quicker than with Oz. I have no doubt that Oscar will grow into a fine young man. Both confident and capable. I guess I won’t know for some time though what the future holds so for now I must try to remember to live for today and in the moment. Yes, at times I feel run ragged and yes, at times, the guilt I feel about realising I could do more or spend more quality time with all my children, is all consuming but seeing them all together and all happy, is worth every second I spend picking Oscar up from the tarmac (I’ve only caught him licking it once, he’s not that weird, I promise).
So what I’m saying is, life can be hard sometimes but this IS life and when I look around, compared to what some people are going through, I haven’t got it bad at all. Oscar’s happy and loved and so I have to run a little faster to catch up with him? At least it’ll help shift the baby weight – every cloud right?!
Just the other day, I was pushing the double buggy. Oscar was at nursery and Alfie and Flo were both fast asleep being pushed along. A well-meaning old lady stopped me on the street, peered in and uttered those 5 words that have been grating on me for the last six weeks. I laughed, perhaps a little louder than I should have for I realised, she thought I had my hands full and she could only see two of them!! She hadn’t seen my Oscar. The one that constantly keeps me on my toes, who I know I always need to be that step ahead of and whose hand I hold a little tighter for fear of him letting go.
“You’ve got your hands full,” she said with a gasp… If only she knew.