September 26th, 2014
So, this is going to be a very emotional (for me), a very personal and most probably a very poorly articulated post. Incredibly it’s NOT going to be about Kathleen and Down syndrome (well, not primarily). And if you wonder why I would feel the need to make it public, well, 2 reasons come to mind: therapy (at least for me) and awareness (you all know how big I am on awareness, right?).
The thing is, a few months ago, our Jessica was diagnosed with Asperger’s. (And if you are wondering, I did ask Jessica’s permission before I posted this!).
Although it was a massive shock (to put it mildly), it was also like the light switch was put on, the last 12 years flashed in front of my eyes and they all made so much sense. For Jessica too, at last she knows why she feels so different to her peers, why the concept of friendship eludes her, why she struggles with the complexity of socially acceptable and unacceptable behaviours which can vary from one country to another, from one school to another, from one family to another, even from one person to another (even I, the social animal that I am can get lost at times in these social meanders!!), I could go on. The point is, when I first found out, my brain did what it does best: research and see what you can do to help her out. And I did.
My heart, on the other hand is still lagging behind, way behind. You see, with children with Down syndrome, say, or any other VISIBLE difficulties, the “advantage” is that not only do you know from the time they are born and therefore put everything in place for that special journey, but ALSO everybody else knows straight away just by looking at them and excuses those children for whatever they’re not doing right, lets them get away with just about anything. And they do, bless them, get away with so much…
However, when it comes to children with difficulties that are NOT visible, well, bless them too because frankly they don’t get away with much! Not with parents they don’t. At least not until the parents realise it is not just a personality trait, or a phase they are going through and will grow out of, or it’s “the middle child syndrome”, or it’s because she’s got a sibling with special needs, or it’s because we’ve moved so many times, or any excuse under the sun, because any excuse is better than the fact that something is not quite “right” with your child. Right?
And in that time capsule, from the time your child is born and you finally find out there is a reason why they are the way they are, well, there can be so much tension, so much frustration and so many misunderstandings from and between the parents and their child. So much wasted time and energy. Especially when that child is doing well at school and seems to just get on with everything that is thrown at her! If you’re lucky, that time capsule is short (it’s all relative, to me 12 years is a very long time but on the other hand, some others never get diagnosed or get diagnosed very late in life!!).
Now, they don’t get away with much from the rest of the world either, let me tell you. Bad parenting will always be the first culprit to that awkward sentence, that awkward behaviour or that social slip. Why? Because the rest of the world can’t SEE any visible signs that that child is actually DIFFERENT. Just different.
You can’t blame other people for passing judgment, we are all guilty of it at one time or another and to be honest, I do believe that bad parenting is to be blamed for a lot of children’s socially unacceptable behaviours. We are only human.
I’m trying to get to the point, I promise.
All I’m saying is, please try and keep an open mind. Not just with other children (or adults) who are not visibly different, but also with your own children. I so wish I had noticed earlier that Jessica was actually different and not just a bit difficult. The diagnosis didn’t change Jessica, she doesn’t need to be changed, she is a wonderful person with a beautiful soul. What the diagnosis did change was tremendous and so wonderful: the dynamics of the relationship she has with us is completely revolutionised, we finally GET her, and that’s a relief not only for us but for HER! So much less tension and frustration at home! As far as she is concerned, she now understands why she feels like an alien at times and that there are a lot of people just like her in our world and that everything will be just fine, everything will be just fine…
Update 3 years later:
I was about to write that getting the diagnosis was indeed the best thing we ever did for Jess, but I really don’t like the word because it implies a name was given to what was wrong and frankly, there’s nothing wrong with this amazing young woman.
So, let me rephrase: finding out that Jessica’s brain functions just as effectively (and in a lot of cases much more effectively) but with a different wiring system was indeed a saving grace. As most of us are considered neurotypical, those like her have to develop a coping mechanism to survive amongst us and hopefully thrive. She’s just done that in the past 3 years. She is doing really well at school, and has a lovely circle of close friends. It doesn’t mean she’s become neurotypical. It means she’s learned to blend in, to a better or lesser degree. Social settings will always be very exhausting and she will always need her own space to recoup.
It’s a bit like learning a foreign language. The tricky thing is, she has become so fluent that you can’t tell she’s got Asperger’s anymore. Mind you, you may say “nobody has to know”. But why should she have to hide it? She shouldn’t and doesn’t. It is important that if and when she does what is considered a social slip-up she is not stigmatised for it. She certainly doesn’t mind talking about it, is not ashamed of or embarrassed by it, her attitude is ” I am who I am, if somebody has got a problem with it, that’s their problem, not mine”. We couldn’t be prouder.
I was right, everything is just fine.
Final update (Jessica is now 18 and it will be up to her whether she wants to share her journey herself from now on, but I do have her permission to share this last update):
She passed her GCSEs and A levels. She passed her driving license and drives. She got an unconditional offer from the university of her choice to study criminology and forensics. She has just started there and is loving her life as a student so far, even amongst a pandemic!
I will finish off with this:
A lot of people are afraid or dislike labels. I love them. They sure don’t tell you the full story but they give you signposts and pitfalls, they give you directions, clues, the do’s and the dont’s, the how-to’s. Before the diagnosis, my child always felt out of place but didn’t know why and was suffering in silence. A diagnosis is a light in the tunnel, is validation you’re not mad nor alone in how you feel, and hopefully it can lead to self-acceptance and acceptance by the others…