(Cognitive) Age is just a number

Here we have just 1 page of Aubrees 12 page physical and cognitive assessment. The coloured blocks are things she has achieved, for a child to be recognised as functioning at a certain age, every block within the age range has to be coloured. Aubree is 4 and functions at an 8 month level, as you can see she’s no where near where neuro typical 4 year olds are. 

And that’s okay! 

It might look terribly sad, poor little child can’t do anything for herself, but it isn’t! None of the tests, assessments, rating scales or progress reports will ever be able to measure just how awesome a child is or how much joy, happiness and love they give. Oh sure Doctors will readily tell you everything your child has failed to learn, all the skills they are doomed to lose and everything they will never amount to. 

What they don’t tell you is how tenacious these kids are. How strong. How exuberant. How wild. They won’t tell you how one small human who can’t speak will tell you they love you in a million different ways, nonverbal just means you have to listen with more than your ears. They’ll never tell you how much this child will humble you, how much love you will have for them. 

It’s not all sunshine and flowers, and our dark days are pretty frigging dark. But its definitely not all doom and gloom either, and I figure if she can get through each day, I can to. 

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(Cognitive) Age is just a number

What do you see?

I see you looking at my little girl. 

I see you looking at her, and then looking at me as I’m looking at you looking at her. 

Then you quickly look away, but steal another look at her. 

And at me. 

What do you see when you look at her?

Do you see a disabled child? 

A child who crawls her wobbly way along the floor of the soft-play trying with all her might to climb a foot-high step?  

A little girl who can’t feed herself, and manages to make a mess of every meal?  

A child that’s being pushed around in a pushchair/wheelchair hybrid?

You’re thinking, I wonder why her mum doesn’t help her over that step. 

I wish she would get out of my kids way! 

How can she let her make such a mess eating?

Why is she eating yoghurt and not a proper meal? 

Why is she being pushed around in that thing, I wonder why she isn’t walking?  

Poor girl. Poor family.

Look a bit closer.

What do you really see?  

I’ll tell you what I see.  

A child whose neural pathways are carrying scrambled messages from her damaged brain to her body.  

A child who has bravely tolerated three years of physiotherapy , occupational therapy, speech therapy and feeding therapy.

A child who still manage to eat orally, against the odds, even though the muscles in her mouth don’t work properly. 

A child who has learnt to sit and crawl independently, despite falling over (ALOT) 

A child that sits patiently in her wheelchair even though she wants to be off, on the floor, exploring the world, and doesn’t understand why it’s not always appropriate. 

Consider this: while your child has been running around at playschool making potato prints, mine has been making best friends with six different therapists.  

While you have been back at work and pondering over baby number two, I have been juggling with therapy programmes and trying to squeeze some normality in wherever I can. 

And friends, imagine if some of your closest friends became increasingly distant because they don’t know how to cope with, or react to, your child. 

I don’t mind you looking.

I don’t mind you staring.  

I don’t mind you nudging your mate and talking. 

I don’t even mind what you are thinking.  

I did mind, for a long time, and it did me no good.  

I have now reached a place where I can happily look at you, looking at my daughter, and look you in the eye, and smile. 

Because she’s mine.  

She’s all mine, I get to take her home and watch her grow, develop and flourish.  

I’m sorry for you, because you’ll never get that divine feeling, that opportunity to watch something amazing happen.

Let’s put it into perspective.  

You probably don’t remember the first time your child independently climbed up the steps and slid down the slide.  

Box ticked! Move on to the next milestone.

Well, I can certainly remember the joyous first time we could safely release my daughter from the top of the slide, to slide down on her own, into her daddys arms.  

While you were applauding your child for counting to ten in French, football practice or dance lessons. We’re happy just to have a seizure-free day.

I feel bad for you.  

It’s hard not to look, it’s hard not to judge, and it’s hard not to wonder.  

But it is easy to show empathy and compassion.  

If you are curious – talk to me!

If you are offended – don’t look!

You make me feel empowered.  

Empowered by your awkwardness, your embarrassment, your irritation.  

I simply feel proud.

Proud to know the real story and the real girl, and be a part of her really amazing journey.  

I am also aware that for every insensitive and unkind person, there are dozens who are genuinely interested, impressed, endeared and enamoured by my daughter.  

Those that can see through the equipment, the splints, the drooling, inappropriate behaviour and delayed speech, and see the marvellous little lady underneath.  

On the scarce days that I strike up conversations with these people, it really makes my day.  

I take comfort in the fact that we have made a tiny yet significant impact on their life.

I wish more people could be more accepting of the multi-dimensional world around them.  

These days it seems that it is more socially acceptable to be cold, quiet and vapid than to be sensitive, open and amicable.

So, next time you steal a look at her, then back at me, and then sheepishly look away, perhaps go home and look in the mirror.  

What do you see?

Fatigue.

Having a disabled child is like being suddenly thrust into a club you didn’t ask to join. You’re shipped off to war even though you never enlisted. But you have to put on your armor anyway, and know that if you’re lucky, you’ll discover new sides of yourself. Like a will you never knew you had. And you’ll get to see new sides of the people who matter the most to you in the world, as they wrap you in their love and lend you their strength when yours is running low. And then you go off and you fight. You fight like hell. Because, really, what other choice do you have? 

Aubree is actually awake in this picture, ill, sleep deprived, content just to be held. Lanky limbs folded in my lap as she nestles into my heart. Her little face. You are worth every moment of this fatigue 💟 

Fatigue.