The past couple of weeks have been a harsh reminder of limits…that as hard as I try to enable PanKwake, sometimes the sensory challenges of her autism do ‘disable’ her.
Tomorrow we are ATTEMPTING a huge one…Oakwood theme park with her brother and carer Mog. So in honor of that, today and tomorrow I am going to share stories from a couple of years ago…
From April 21, 2015
MomKwake is exhausted and on the verge of tears. It was another big day at the fun fair in Finsbury Park. PanKwake’s carer took her this time. I stayed just outside because I could not handle watching her on the scary rides.
Then it happened…the call I dreaded: PanKwake was having a meltdown inside. I politely explained to the man at the gate as I cut through the special buggy gate in front of the long line. I held out a tenner to pay my entrance fee but he just shook his head and waved me on.
I find PanKwake kicking and crying. She wants a blue stuffed poodle in the claw machine. I go to the back and explain to the man about her being autistic. He says that the stall at the end of the row has more. I try to talk to her but no go. The man opens the machine and pulls out the stuffed toy.
But even then…it is not enough. That is one HUGE difference between a temper tantrum and an autistic child’s meltdown…even giving them what they want is not enough. The problem is that something physically or emotionally hurts them inside and they lack the communication skills to tell you exactly what it is. Let alone figure out how to make it stop themselves.
So then it was time for her wonderful carer to leave…but without the normal leg hug routine PanKwake could not manage goodbye. She demanded her favorite game of tag. Brilliant and caring person that she is, our carer stayed and even helped push the buggy up the hill to the play area. And tag it was.
But then it was…I want to ride the boats. With a line around the corner and them closing shortly. Then it was…I want a jacket potato.
The thing was that I could see her calming down…almost watch the reasoning return to her bright brain. She was getting herself back into control. And she sought her comfort area once more in the buggy.
Off we go in search of jacket potatoes with butter, cheese and sour cream. The cafe in the park did not have them. So as we walked back out the park I offered her chips (crisps) that we had in her bag from earlier and she thanked me as she accepted them until we could find the potato. She even commented as we passed back by the fun fair, “I am turning my head so I don’t see it and want more.”
We trotted on over to a store near the Tube station because of course almost no cafe has sour cream for their potatoes. We got that and walked back towards the station and with a smile she says goodbye to her carer.
We had to visit two or maybe three more cafes until we found her jacket potato and even then the man had not melted the cheese enough on the top. I worried that she would have another meltdown but instead she said, “I’m so hungry I’ll deal wif it.”
We walked home then…another 20 or more minutes. We stopped at another store for more potatoes so I can make her the good ones and more ice cream.
As we passed the card shop, she commented about another stuffed Moshi in the window. When could I get that for her? I said when I got more money and held my breath for another meltdown that did not come.
We passed the pound shop and she so politely asked if she could have one thing from there. She even picked an inflatable pillow out of the window. And we paid for it. We were almost home then…potato finished and PanKwake smiling.
We made it home…five hours after we left…over an hour and more than a mile walk after we left the park.
PanKwake wanted to play Minecraft on her iPad. I printed out things for her to ‘craft.’ Then she had trouble…and another meltdown. A small one and we are home. No one to watch us. No one to judge us. So I dealt wif it.
This time the issue was that PanKwake was exhausted. She pulled the covers over her head and told me to deal wif it. She was going to take a nap.
Now that was before 7 so I know that she will wake up later, probably just about the time I am laying down to go to sleep. But that is all just part of our life with autism.
So many people would or maybe even will read this and condemn me…for spoiling her, giving into her. I don’t care. Let them. I read a book on autism once that compared an autistic child’s meltdown to a panic attack. I know how that feels.
A few years ago I suffered from depression following a miscarriage. I would have panic attacks any time I got more than three blocks from where I lived back then.
One day I had an appointment. I worked up all my nerve to go to it. I got lost on the way but was determined I could do this. I arrived and checked in with the security guard, who told me to take a seat and wait. I waited and waited and waited. I was afraid to even approach the guard again. I felt panic building inside me like bubbles when you shake a coke bottle. I eventually did get up the courage to speak to the guard again and he nicely called the person with whom I had an appointment, but she did not answer.
I left there in tears. I was sweating and shaking. My mouth was dry and my heart was beating so fast I feared it would explode out of my chest. I walked all the way home then too. Huge tears streaming down my face and people staring at me.
I was forty-five years old. I had two college degrees. I had managed a six million dollar charity campaign. I had handled drunk celebrities at an AIDS fundraiser. I had organized a dinner party in the posh country house of a Duke and Duchess. And I could not stop crying walking down that street with thousands of people looking at me like I was crazy.
So why would I expect my 9 year old daughter to be able to deal wif the pain inside of her?
This society on the other hand should learn to ‘deal wif’ those who are different…be it autism or mental health issues. Cardinal Roger Mahony got it right when he said:
“Any society, any nation, is judged on the basis of how it treats its weakest members — the last, the least, the littlest.”