Originally posted May 25th, 2015
Sometimes I don’t know why I do it. Yes, I do. Because I want to give PanKwake as close to a ‘normal’ childhood as I can.
So yesterday found us back in Finsbury Park at ANOTHER fun fair. Having learned my lesson from last time, I gave us plenty of time with her carer…four hours. Plenty of money too. I also made sure to give her plenty of time warnings at half an hour, 15 minutes, 5 minutes.
And I thought…it worked, this is perfect, she is having a great time. Right up until the moment that we got outside the gate and her carer went to get on her bus.
Then she kicked off. Laying on the ground. Kicking. Screaming. Cursing. Trying to run away…with one of the busiest streets in London less than 15 feet away.
And all I could do was hold her feet to keep her from kicking me too hard or especially running into the street.
I do want to say…THANK YOU…to the half a dozen true heroes who stopped and genuinely asked…Is there anything I can do to help? You rock. To the other mothers of autistic children, who offered your empathy…thank you especially for sharing our encouragement.
But the hardest thing of all was not all those others who stared…somehow I have learned not to even see them. It was when she said…”You’re not my mother anymore. I want a new mother.” Don’t get me wrong…I know that she did not really mean that. That she cannot control herself when she gets like this. I know that…
But having lost a baby, a marriage, more than one job, and any hope of ever finding the one I wish with all my heart (there was a man who could just accept us for who we are and be there to hold me when all of it was over)…having given up all of that, getting up every morning to write so that one day hopefully I can give her the life she needs, having put strains on my relationships with my other children, waking up several times in the middle of the night to check on her…those words hurt. No, a knife to my heart would be a quicker, kinder fate than remembering that moment.
Of course, for her the most wonderful thing about autism is that once the meltdown is over…it is over. It took half an hour on that street…and another two of rambling streets looking for a ‘new family’ but when we got home she got a bath, ate and watched YouTube videos.
I, on the other hand, lay all alone in the bed just across the hall…and played those words over and over in my head until it throbbed. Not even an episode of Game of Thrones and tablets eased the pain…or erased the memory. Like I said…I know…I realize she does not mean it. Cannot control it. But neither can I just forget it.
As I told a friend…it is the law of emotional gravity…what goes up, must come down. And right now, she does not have the developmental capacity to regulate her emotions. I have studied child development enough to know that this is a brain maturity issue. And it is just a matter of time and patience. But what do I do until then? Do we stay home where her environment is more controllable and those types of meltdowns are less frequent and more manageable? But then how will she ever learn to modulate those emotional highs and lows if I do not give her those types of opportunities?
It is another day. I awoke tired…and emotionally drained. But the sun is shining…and it is another day…another opportunity. Today we are going with our carer to her favorite pool. I have it all planned, but then again I had yesterday planned too. So I recognize the futility of that. I am prepared for another one…as much as I can be anyway.
Of course, after today we have three days with nothing scheduled. Time for us both to rest and recover…from this thing we call life with autism/Asperger’s.
It’s does seem now that I got that one totally right…It was a maturity issue.
Or did I? We should be back and recovered tomorrow. So I will tell you then how PanKwake did at Legoland and the Autism Show. Did she manage without a meltdown?
How did Cookie and I survive? When I read that sentence about my dream man I wanted to cry…even then I knew…the one thing that I needed and PanKwake too was the thing that no personal budget or government could ever give us…his strong arms, broad shoulders and kind heart to just accept us as we are…and love us unconditionally.