Yesterday we saw your paediatrician….again. It was far from your first visit, and given the outcome, it will be far from your last. You see, yesterday you were finally given a new label.
It’s official, you have been diagnosed with Autism Spectrum Disorder.
Now, this is a word that you have heard before. In fact, the first time it was mentioned in your hearing was during a developmental follow up visit when you were about 18 months old. And it’s been talked about during countless visits with your paediatrician, occupational therapists, speech/language therapists, physiotherapists, feeding therapists, dietician, educational psychologist, early interventionist, neurologist and your teachers.
And I am certain that you will hear these words, or variations of them at different points in your future.
I am fearful that you may also hear other words; unkind words.
In your 4 ½ years on this earth, you have already picked up a few labels; Epilepsy, Sensory Processing Disorder and Global Developmental Delay. So, why didn’t I write you a letter until now?
I guess it’s because I feel this is one of those labels that people may use to define you. And I am writing this letter to you now to tell you that you must never, ever buy into this label defining you.
It is not YOU. It in no way encapsulates all of who you are, at your essence. It is merely some luggage you are carrying on your journey through this life. And believe me baby girl, we are all collecting and carrying luggage through life. Ours may just be a different colour, or a different size, or not as heavy. But we ALL have luggage.
I want you to know that I explored every avenue before agreeing to this label being marked down against your name. I wanted to be certain of what it was we were dealing with. And I say we because I have been with you every step of the way, and that is where I will continue to be.
I wanted to be certain that this was not just a symptom of your poor seizure control. I have asked a number of specialists “Having multiple seizures per day on a daily basis for months at a time, has to have an impact, right?”
And now that you are only having 1-3 seizures per week we have seen a slight improvement in your ability to cope with the world around you, and even participate in that world a little more.
Yet I see that you still interact with the world and anyone in it, on your own terms; that you find it incredibly challenging to deal with change, and whilst you hold it together for others, you fall apart in my arms.
So, whilst I wasn’t expecting a conclusive diagnosis to be part of yesterday’s appointment, it didn’t come as a shock. After all, a big part of this past year has been working with experts to give you opportunities to show us what your world is like.
And while I wasn’t running from this label itself, I was concerned about how it would affect how people treat you in the future.
Does this mean that they will expect less of you?
Does this mean that they will only view you through the lens of the luggage you are carrying?
Does this mean that you will be subject to ridicule or bullying?
But there is a flip side to this; a positive side.
It will give people context.
It will allow your friends, family and strangers to perhaps have a little more empathy when the world is overwhelming to you and the only way you know how to cope is to scream and rail against it, or to wrest control back in whatever small way you focus on, or to shut down and block this scary world out.
Because no matter what I do, or what I have done, this world that your twin brother views with curiosity, or some of your peers view with calm certainty, is a scary, unknowable, treacherous world to you.
So here are a few promises I’m making to you:
- I promise to always treat you as an individual, and see you for more than just the luggage you are carrying.
- I promise to advocate on your behalf, and fiercely defend you from ANYONE who would dare think of you as only the luggage you are carrying.
- I promise to do my best to understand your struggles and help you develop the skills to be able to carry your luggage, or make it feel lighter.
- I promise to be the calm to your chaos.
- I promise to be your refuge from an unkind world
What all my promises are saying, is that I love you unconditionally, and that this new label does not define you.
This scary, unknowable, treacherous world can be conquered, and you my little lovebug are just the brave girl to conquer it.
So, if in the future you hear unkind words, I want you to remember mumma’s promises; I want you to realise that unkind words are more a reflection of who the people are that use them, rather than who you are; and I want you to let them deflect off you, because you my darling, are surrounded by mumma’s unconditional love, now and forever.