I can't quite explain how hard it is to internalise your child's special needs diagnosis.
How hard it is to go out into the world and keep your chin up.
Sure, you put on a brave face.....you do your best to cope out in public....
Trust me, unless you're very close to a family trying to cope with a child on the spectrum, you'll never come close to knowing just how hard it is.
The simple act of getting ready for school and out of the house in the morning, eating breakfast, grooming, dressing, getting into the car.....can be a nightmare some days.
Then the drop off at school and you smile and listen to the stories others tell you about the difficult time they're having with their non ASD child.....
You keep smiling while you crumple inside.
Then you cry all the way home.
How can you tell them about the last 24 hours?
The tantrum your child had because of sensory overload?
The nightmare of combing their hair?
The disaster at breakfast because the toast was squares, not triangles?
(How could I forget to cut triangles.....???)
You can't tell anyone about that......so you smile.
Which is what I did......
To cope, I begin to harness the art of keeping busy....
BUSY. BUSY. BUSY. BUSY. BUSY. BUSY. BUSY. BUSY.
Why was it so important for me to keep busy?
I really had no idea at the time I was doing it. But I was so busy, my day was filled with the things I had to do.
I was so busy I only ever ate standing up.
I ended up with 3 casual jobs so I could work around school hours.
I became active in the Mental Health system trying to smooth the pathway of understanding between the consumer and the system (which was pretty bumpy in early days).
Then there were the appointments.
So many appointments,
Occupational Therapy......BUSY
Speech Therapy.......BUSY
Psychologist........BUSY
Then I was busy, busy, busy at home.
I did my best to fill every minute of our son's life with therapy he didn't know was therapy.
Shaving cream in the bath for his fine motor skills......BUSY
Playgrounds, for his gross motor skills.......BUSY
The casual conversation that was really speech therapy.....BUSY
The list is endless and consumed my life.
I took on study.....correspondence of course....Too busy to get out of the house.
My calendar was so full of the things I had to do.
Why?
Why so BUSY?
When I look back I realise my behaviour of keeping busy served a very good purpose.
When you're busy you can't think......
When you can't think
It doesn't hurt so much.
Because when you think...
It really hurts.
So I avoided having time to think by making sure I had no time.
No time to catch up with people because if they'd asked me how I was, the bubble would have burst.
No time to dwell on the fact that the way my life was,
and the pictures in my head of the way I wanted life to be,
didn't quite match up.
As Cameron has grown it's become easier.
Not that he became easier, more so because the pictures that were in my quality world shifted focus, and changed so much so, that things weren't quite so out of balance anymore.
So I didn't need to be so BUSY.
I've had time in the last few years to think about how I've managed, coped, functioned.
I wouldn't change anything.
I was, after all, doing the best that I could do at the time.
Today, working as I do with special needs children, I see many parents doing exactly the same thing.
So busy my heart hurts for them and where they are in their journey.
The only thing I can do is put an arm around their shoulder.
I know it hurts, I know you can't think about it but, eventually it will be okay.
It will be whatever it will be.
We are, at all times, doing the best we can do to cope in any given situation.
At some stage, it's important to pat yourself on the back and remember that.
Remember, you are coping, even when it doesn't feel that way.
Remember, you are doing the best you can do, always.
Remember, you are amazing.
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