When patience runs out
Disappears out of sight
Leaves pure anger behind
Unsure - what's wrong - what's right.
The patience of a saint, they used to say
Dealing with the meltdowns day after day
Waiting for diagnosis, hoping for a cure
How many more years can anyone endure?
It's aspergers, autism, ASD.
The label, the title, means nothing to me
What I needed was a proper solution
Instead we find out it's a lifelong condition.
11 years on at the end of my tether
Random meltdown triggers -
Sometimes even the weather
11 years on and there's no patience left
I lose my temper. I'm shouting.
Then we're both feeling bereft.
11 years on, I'm emotionally tired
It's not his fault. it's the way his brain's wired.
It's over, he sobs, finally falls asleep,
Exhausted I find myself collapsed in a heap.
Patience.
Do you have some I could borrow?
It's likely I may need some again tomorrow.
22/09/2015
I wrote the above two years ago but decided against hitting the publish button for J's privacy. It's disheartening to find even now things haven't changed. And he needs to know how much this is affecting our whole family. We've endured a 3 hour meltdown this afternoon that has affected every single member of this family and it's still continuing. J - I know you read every blogpost. That's the reason I keep this blog going. I try to write about the good stuff. The happy memories. But you need to know this is really tough for us all too. We love you soooo much. We are unbelievably proud of you in so many ways. We just want you to behave as if you want to be part of our family and not push us away when we are trying to help you.
Sending huge hugs. My eldest still has meltdowns, but nowhere near as much as when he hit puberty, I think that's when all ASDs become incredibly testing for everyone. Things are much calmer now, from the outside you'd probably wonder how we cope, but the simple fact is, you do get used to it all. I have number 2 ASD child about to hit puberty so I feel your pain. There is always another side though, keep positive and always remember, as you said, it's no-one's fault. Patience really is the key xxx
ReplyDeletethank you Anne. You are so right with what you say about getting used to it - I have people say 'i don't know how you cope' but the reality is that somehow you have to cope when there is no other choice. xxx
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