I remember in the mid 80’s, being around about 8 years old, taking a trip up to London with my family and being approached on the street by a man with Down Syndrome. I was walking a little way behind my family, not so that they were out of sight of course, but more than likely, I was dawdling behind them. Being the mid 80’s, I had been channelling my inner “Sarah Ferguson” (Sarah Ferguson as in Fergie, who went on to marry Prince Andrew) and that day I was sporting a huge bow in my hair! A dreadful fashion faux pas in hindsight but I digress. The man I spoke of approached me. I remember he got right in my face and told me he “loved my bow” and that I looked “beautiful”. I remember the way he talked and thinking back then, that he sounded a little odd. I remember feeling like he got inappropriately close to me and that I didn’t much like that feeling, but mostly I remember feeling panicked. He wasn’t alone. I imagine he was with either his parents or a carer. They backed up his comment about my bow and continued on their way.
But that day has always stuck with me.
It was the beginning of my irrational fear of people with DS. I’ve talked about it briefly before and perhaps I am being a little too honest here (it is not my intention to cause offense and I do have a point I’m trying to make, which I’ll come to later, I promise) but that was really the beginning of a series of events that I can now look back on and wonder how ironic it was that I was to go on to have my own child with DS.
There was the Sarah Ferguson bow incident, then there was a young boy with DS in my local dance school when I was around 12 years old, who intimidated me; a whole bunch of young adults with DS who visited my college when I was 18 years years old, who just seemed, well really over familiar and then after that, no real interaction until later in life.
In every instance, there was something about these individuals, which made me wary. They were different and I felt nervous around them.
I’ll come back to the point I’m trying to make later…
A couple of weeks ago, it was 9.30am and I had just dropped Oscar off at nursery. It wasn’t unlike any other Wednesday morning, only that this day, I felt on edge. You see, over the last few weeks Oscar has been going through a bit of a phase. He’s taken to biting. I thought at first it was just me that he was biting, after all I’m the person for the most part that tells him to stop doing things that he shouldn’t be doing. I thought it was his way of retaliating. Of letting me know he wasn’t happy with being told off. And although not ideal, I felt comfortable that I could control it to an extent. Over the last couple of weeks however, he has taken to biting his friends, something I am completely and utterly mortified about. Now I appreciate there are so many much worse things happening in the world at the moment, but dropping him off that particular day, I felt nervous. I was standing talking to the nursery staff, who for the record couldn’t have been lovelier or more understanding if they tried. I could see Oscar across the room with his friend and she was giving him a hug… she must have hugged him about 5 times in a row and in-between each time, they kept pulling away from each other and giggling. Even though it ended and they went on their way, it took everything in my power not to go over there, just in case he might have bitten her, as there is nothing worse than seeing your child hurt another child (well, there is of course; national disasters, terminal illnesses, murder… but you get what I’m saying).
On arriving at the nursery last week, I was told he’d bitten a little girl, three separate times throughout the day. No one else, just this one little girl. MORTIFYING! I knew that the nursery couldn’t tell me who he’d bitten (nursery policy) and that although they had to tell the little girl’s parents that she’d been bitten; equally they couldn’t tell them who the culprit was. It was pretty obvious however that when the parent questioned their child about who bit her, being almost 3, this little girl was going to be more than capable of saying “Oscar did it”, of course. It turns out the little girl in question was a friend’s daughter, who again couldn’t have been more understanding and nicer about the whole thing, but it was still embarrassing all the same.
I always remember when Oscar was a baby, he growled. He doesn’t do it now, but at the time, I was concerned. WHY is my baby growling? He seems to be growling for no apparent reason. Like the time we went to baby sensory class and everyone elses children were sitting quietly or babbling away nicely. Oscar didn’t though. He growled. People would often comment on it. One of his therapists said she thought it was a little odd (which for the record, this therapist wasn’t a speech therapist so didn’t really have the knowledge to back up her “odd” theory and for the record, using the word “odd” to a relatively new mummy, about her already “different” child, was bordering on sending her over the edge but whatever). I remember being out and about with him and feeling like everyone was looking at him like he was some kind of crazy loon. We’d get into a lift, where of course, especially in England NO ONE dares talk to each other being the stuffy Brits that we are, and in the silence he’d growl. I’d then do my mock surprised “Oscar, what’s that funny noise?” As if he’d literally done it for the first time there and then, to be met with smiles and laughter. Looking back now I’m not sure why I was so embarrassed… It WAS a phase, which he grew out of, after some time I might add. And honestly, the only growling he does now is if we sing the verse of “Row Row Row Your Boat”, with the lion in it, then we of course the growl at the end in true lion fashion.
Also I remember a while back, I wrote about Oscar going through a period of pushing his little brother over. Alfie had just started to walk and Oscar would take great delight in body slamming him to the floor and like an international rugby player, pinning him down. I had been worried, I sought advice, I reprimanded him… and it passed. It took a while mind you, but he eventually stopped. I mean, he still sometimes gives Alfie the odd push but then what 2 and three quarter year old wouldn’t? The good part is that Alfie gives as good as he gets now so his match has been well and truly met!
But the biting thing seems worse than these other little phases. A push happens and someone can get up, usually unharmed. But a bite? Wowsa it can hurt! And he’s got a good set of gnashers on him now.
We were at a play date a few weeks ago, with a whole bunch of Oscar’s friends. We had all been to music class and then afterwards we went back to one of our friend’s houses for lunch. The children were in great spirits. We’d all had lunch and I knew it was getting to that time of day where both Oscar and Alfie were ready for their afternoon naps. I should have left about an hour before I did as they were tired and subsequently Oscar was wired. If I had been on the ball, I could have stopped him in time… but I wasn’t. I could see that Oscar wanted to get out of the door, but one of his friends, a little girl, wanted to shut the door. There was a lot of pushing and pulling going on. One wanted to get out; the other wanted to stay in. It was a battle of wills, who was the strongest? Who was asserting their authority loud enough? The door was swinging. And then a shriek. A loud piercing cry. It was the little girl. A cry SO piercing that I knew instantly what it meant… She’d been bitten! Oscar had become so frustrated, that he couldn’t get out the door and I’m presuming that he couldn’t put what he wanted into words and so he bit her. That’d make her get out the way surely? And it did of course.
I immediately approached Oscar. “No biting”, I said and signed to him. I then took him over to the little girl who at this point was in the arms of her mummy, inconsolable. “Look Oscar, she’s sad” I said and signed “Say sorry”. I helped him sign “sorry” as even though we have MANY signs now, a list that I’d been so proud to take to his paediatrician and team meeting last week, no matter how many times we use it (and we use it a lot at the moment), just like Elton said, sorry most definitely seems to be the hardest word (sign) in Master Roberts’ world. MORTIFIED.
Thankfully, this little girl was ok after a few minutes and thankfully her mummy was understanding. “Children go through these sorts of phases, Sarah”, she said. “It could have been any one of the children here today.” Of course I knew she was right and subsequently, having spoken to other friends and parents of little children, they all say the same thing, but I realised as I got more and more upset by Oscar’s behaviour, that the biting wasn’t the real issue here.
You see, had it been Alfie biting I could accept that people would be happy with the “just a phase” label. But With it being Oscar, I realised I couldn’t shake this one thought going round and round in my head. Would people feel anxious about their child hanging around with him now and in the future, knowing that he could be volatile at times? Would they decide that they didn’t want to have him in their friendship circles, for fear of his behaviours? Perhaps an irrational thought on my part (lets not forget I am 23 weeks pregnant and a little over emotional at the moment) or perhaps, if people were truly honest, it was something they may be feeling. Maybe not so much now, as children of Oscar’s age, regardless of having additional needs or not, still constantly push each other, shout at each other, fight over toys and so on, but maybe in a few years time, when their children are fully aware of the consequences of their actions and Oscar potentially still not quite getting it, would they then turn around and say we’ve had enough of him? I guess that’s my biggest fear in all this. Are people not going to want Oscar in their lives?
So now back to my initial point…
I appreciate when I think back to the girl I was with my “Sarah Ferguson” bow in my hair days, I was young. But what if Oscar’s peers feel nervous around him? And even into my teens and early adulthood, having not really been exposed to people with DS and having very little knowledge and understanding, I made a judgement. I give my friends and family full credit here and know that they have lived life long enough not to be so narrow-minded and prejudiced as I once was, but if they were? Could I blame them? I was told this week that amongst a group of friends, one of the children started biting. It turns out, one of the parents felt they couldn’t let their child be at risk of being bitten, so sent an email to the mother, saying that she felt she could no longer mix in the same group. Hearing this, I felt sad. Because surely at some point, every child goes through some kind of phase and although not every child bites, there are many other ways they can vent their frustrations.
I’m hoping with Oscar, people understand. I’m hoping that in time, it will pass. I’m hoping that anyone reading this that knows Oscar and me, knows that I am doing everything in my power to make it stop. To help him understand it’s not acceptable and can’t go on. I’m hoping that people will give him a little bit of a break and give him that time. And I’m so hoping he/we will not lose friends over this. When I was that little girl back then, there were no children in my class at school that had DS or any other disability for that matter. But here’s hoping times having changed. Children are more understanding and accepting… there is that hope at least.
It has been a whole 13 days since Oscar has bitten. He’s been to 3 sessions of nursery, playgroups, and music groups and mixed with a lot of children. I don’t for one second think it’s the end of the phase already, I’m aware he has a habit of lulling me into a false sense of security at times…. but it is a start. I’m guessing behind the biting comes frustrations. He’s coming on so much communication wise, both in his signing and the odd word here and there. I’m presuming the biting is a frustration in that he so desperately wants to get his point across, that sometimes, the only way he knows how, is to bite. This parenting malarkey is a minefield. There’s no instruction manual available that tells you how to deal with this stuff. This isn’t the first phase and most definitely won’t be the last. All we can do is put the lid back on the blender from time to time… and hope that there’s not too much of a mess!