Angelman Syndrome: The Potential To Be The Making Of Us

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“The last thing we want to do is to make you feel like you stand out,” she said.

“Oh, it’s okay, I do anyway. We do. I mean, we always will. That’s part of the deal with having Angelman Syndrome.”

Standing out. 

This week has been a week of feeling, well, different to the rest of the mums. Of being acutely aware that Rufus is different to the rest of the toddlers we hang out with. Of feeling like we stand out and wishing, just for a second, like we could blend in and not be noticed.

I realised early on in life that I stood out from the crowd. I have curly hair. Not a big deal in some places but in the town where I was raised, at the primary school I attended, I was literally the only person in my class with curly hair. And I mean super-curly Italian hair. My mum used to say how everyone admired my hair when I was little. I now realise it was mostly old ladies who wished their hairdressers could make their wash and sets look like mine. One of my primary school teachers wrote me into a class play as a victim of bullying and came up with the idea of the bully calling me ‘Vileda Supermop’. Brilliant idea. Guess what all the boys called me for the rest of the year? At secondary school my chances of blending in didn’t get any better. Within the huge secondary school I attended there was only one other girl with super-curly hair in my year group and she lived on the other side of town so she had the kind of mates that meant you wouldn’t mention her hair let alone bully her about it. So little old me was the brunt of all the curly hair jokes. Microphone-head; ’testing, one two, one two’ with a succession of fierce pats on the head; Afro (yes, I grew up in a pretty much all-white town so they thought this was funny); Pube-head; you name it, my hair and I got it. Being pushed into the holly bushes on the way to school or having your head flushed down the toilet were two of the things everyone dreaded the bullies doing at my school. Thankfully neither of these happened to me but having the Head of Year’s son spit in my hair on the way home from school was a pretty low point. So, you get the picture, I really didn’t blend into my surroundings. Of course as a teenager this was pretty devastating so I did everything I could to change my hair so I could just blend in: straightening it, chemically relaxing it, using every curly-haired product under the sun to tame it, braiding it, putting it in such a tight bun on the top of my head that I hoped nobody would notice it, cutting it short and having a reverse perm, growing it long in the hope that the curls would grow out. Despite all my efforts, it kept growing back curly and it seemed there was nothing I could do to stop it.

Maybe I grew tired of trying or maybe I just grew up. Whatever it was, one day I just decided I would fully embrace my curliness. And I’m glad I did. 

Fast forward to present day and I live in a vibrant, diverse community within a huge and creative city where having curly hair is completely normal and no-one really stands out from the crowd for the way they look because there are so many versions of ‘normal’ that no-one really looks twice at anyone. Finally, curly-haired me blends into the crowd. So I go about my day doing normal things, going to the park with the kids, blending in, not being noticed. But, the thing is, recently I have noticed that old, familiar feeling of being desperate to blend in creeping back in. Of course, it has nothing to do with the way I look anymore. It’s about the boy I spend all my time with and the increasingly obvious Syndrome he carries around with him. 

When Angelman Syndrome officially entered our lives 9 months ago, blending in ceased being an option. Life became about standing out, feeling different, unusual, learning to adapt to surroundings or to activities, about encountering new people who wanted to know about Rufus, having the pity-looks, the questions and then The Conversation (explaining the ins and outs of the Syndrome and what the future holds for him). There is no more blending in now.  

On Monday morning I got in the car after Rufus’s very first trial swimming lesson and felt a big old lump in my throat. After several conversations back and forth with the lesson provider about which age swimming group would be right for Rufus, the swimming company verifying with ASSERT UK that Rufus (with his condition) would be safe in the water and finalising the details, we braced ourselves and turned up at the group. Separately from one another, the instructor and I realised very early on into the lesson that the group wasn’t right for Rufus. Not only did his tiny, wobbly body look so different to the other normal-sized boys who were also nearly 2 years old, they could all follow instructions, walk, talk and were beginning to move towards independence in the water. Don’t get me wrong, Rufus had a wonderful time in the water. He loved it. His continual beams, giggles and face grabs reassured me that he was having the time of his life. I mean, anyone who knows anything about Angelman Syndrome knows that water is a winner every time. But really, whatever the teacher was trying to get him to achieve, he wasn’t even remotely interested. So at the end of the lesson, as we started making our way out of the water she said, 

“Just hold on, I’d like a quick chat after everyone’s gone,”

Of course, like any parent who is grabbed by the teacher in the playground at the end of the day, I knew he’d done something wrong. 

And it was then that she explained that she felt it was right to put him into the lower group, the group for 6-18 month olds. He’s 21 months old. Her reasons were absolutely valid, I agreed with everything she said, in fact, I would have suggested it if she hadn’t but the fact was he was being demoted. He couldn’t follow instructions and wasn’t anywhere near moving towards independence in the water. And I felt sad. I felt sad for my boy that he stood out and he wasn’t like the other boys. I think she could see that and so that’s when she said,

“The last thing we want to do is to make you feel like you stand out,”

So I explained away my feelings and responded with, 

“Oh, it’s okay, I do anyway. We do. I mean, we always will. That’s part of the deal with having Angelman Syndrome.”

As I look back over the events of this week I realise that my ’normal’ is actually quite unusual for most mums. I guess when I said to the swimming instructor that standing out is ‘part of the deal with having Angelman Syndrome’ I meant that everything ‘normal’ we try to do will always look different to how I imagined it should look. To give you an idea, here’s how the rest of my ‘normal’ week looked after swimming: Phoning his paediatrician for a new prescription; racing across town to collect the prescription in time because I knew the medication was something they would have to order in; collecting his sister from pre-school and meeting a mum at picking up time who asked his age as I held him in my arms and looked at me strangely when I responded with 21 months; meeting with a health visitor and sleep specialist to discuss how to move forward in his sleep plan; racing across town again to deliver the prescription to the pharmacy so we can get the sleep medication he so desperately needs in order to function normally as a family the next day; being kept awake by him for 2-3 hours every night this week for no apparent reason other than he has a sleep disorder; meeting with a Speech Therapist for the first of 6 pre-language play sessions; collecting the prescription; buying shoes and realising that his feet are too big for ‘pram shoes’ but feeling annoyed that there’s no point in spending loads of money on proper shoes when he’s not even walking; having The Conversation with a lady in the park and tripping over my words trying to explain why he’s not walking and talking like her daughter who is exactly the same age; being seconds away from calling 999 as he started going blue from choking on a piece of pear.  

And that’s part of the deal with having Angelman Syndrome. Every single day we have these stand-out moments that I know are regular Angelman Syndrome moments which most of my friends are not experiencing. I know we are different and I know this is the way our lives are now but how, for a second, I just wish we could blend in and have regular toddler moments sometimes and have those normal conversations comparing the mundane and ridiculous with other toddler mums. How I wish I could go to a swimming lesson and watch my son follow instructions like the other boys and show signs that one day he, too, would learn to swim. How I wish that his paediatrician’s phone number was not one of my most frequent calls this week and that I could experience a regular toddler meltdown whilst shoe shopping. But wishing will get me nowhere. Wishing to change something in our genes is pointless. It’s in our genes. I should know, having spent half my life wishing to change my curly hair. If I could’ve told my young self, so desperate to look like everyone else and to blend into the crowd that one day not only would I love my hair, I would actually see it as a trademark look that I would never want to change, I wouldn’t have believed me. The thing about my appearance that I was most desperate to change; the reason I was bullied, is now the thing about my appearance with which I am most happy. The battle is over, the curls have won. Untamed, unkempt and more often than not, unwashed. 

As I find myself fighting this internal battle right now about wanting Rufus and I to blend in when we are out and about, wishing to appear normal and trying to avoid eye contact with strangers, but also wanting to stand out and tell the world how great he is and to teach everyone I meet about life with Angelman Syndrome, I wonder what the future me would say. Perhaps she would say that when this battle is finally won, it has the potential to be the making of us.  

Rufus is absolutely pleased as punch to be the person he is right now. He’s here in the world doing life and living it to the full and as far as I can tell by the ear-to-ear grins he gives us day in, day out, he doesn’t wish to be any different. He actively seeks out complete strangers to smile and giggle at. Today, in a supermarket he knew exactly which members of staff needed to lighten up and when a smile wasn’t enough to make them crack, he giggled. He soon changed the atmosphere. If I’m going to learn from anyone about how to feel comfortable standing out in a crowd, I’ll learn from him. But I think I owe it to him to do better than just feel comfortable. I need to learn how to feel proud to be his mum in every situation, in every encounter with a stranger, every time I receive a pity-look and particularly every time I so desperately feel like I want us to blend in. I need him to help me to wear my Angelman Syndrome Mum badge with pride and feel completely at peace with the way I am, the way we are and the way we’ll always be. And maybe, if I let him, this could just be the making of us. 

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