This is gonna be hard to hear for some people…probably most of my British friends especially those with additional needs kids. But…
NO ONE IS COMING TO SAVE YOU!
In September 2001, I watched on television as hundreds of New York City police and firemen ran into the Twin Towers…never to come out. Just weeks ago, 79 people perished needlessly in fire in a London tower block. Firemen had told many of them to stay inside that they would come for them. And every single day and night…parents of autistic children fail to receive the support they need.
It is a sad truth. But there are several MEGA charities that have and continue to invest millions and perhaps billions into finding the causes of autism, ‘awareness’ campaigns, and ‘cures’. Yes almost none of their money is being used in the direct aid of those with autism or their families/carers.
Government? Well, I am lucky. Being American, I never ‘expected’ them to do anything for me. But in fact, the worst times of my life with PanKwake have been the handful of times that I attempted to work with the local authority…usually at the urging of British friends telling me how government had a ‘responsibility’ to do this or that for us.
I wasted almost a year of my life down that path. I was deceived and lied to. I ended up more of an emotional wreck that I started out. My stress was higher from their process than it was from my child’s autism.
And even then I knew…I knew what I needed and that they could not give me that. I remember telling my good social worker, ‘No matter how much money you give us, it won’t be enough for what I really need: someone to hold me in the middle of the night after one of her meltdowns, someone to tell me I am doing a good job, someone to laugh, love and cry with.
Last night proved that.
I know that some people think/feel that my life is charmed and that I don’t have any right to talk about this stuff. I know that I am in fact Cinderella. We have gone from a dingy, cramped two-bed London flat to a mansion. Yes, even PanKwake calls it that. And while I will not pretend that this house is not a huge blessing, the man that gave it to us is the bigger one.
Last night was case in point. We had finally drifted off into sleep after enduring her pranks at midnight…fixing and re-fixing her potatoes to get them just right…then getting her more water. I was sore from the RA after several days of non-stop activity. Then at 2:23 we were awakened by her screams.
The stand portion of her iPad cover had broken. And her world had come to an end. She could not meet Pineapple in Google Hangouts while playing the computer and holding her iPad up. She could not fall asleep to YouTube if she had to hold it (though she used to do that all the time before she got this new one). She might as well throw the iPad itself out the window. It was useless.
I did all I could think of. I promised her to go into town today to look for a new one. I tried taping this one. I would get her another one off of Amazon. Nothing worked. She wanted Cookie Monster to look at it…to fix it. Now mind you…I do my absolute best to avoid getting him up in moments like this.
But this time there was no choice. And he was able to sort of ‘jerry-rig’ the thing. Her dad who had bought the old one has ordered a replacement to arrive tomorrow. I am already preparing strategies for how to manage her…if she wakes in the same mood. Though honestly she is not likely to do so. You see this was a perfect storm. She would have been upset anyway…demanded a new one. BUT because she was already tired that equalled a massive meltdown.
When Cookie and I finally crawled back into bed after 3 AM, it was with laughter at the funny things she says. It was with hugs. And gratitude. There was no recriminations for waking him…for spoiling her…for any of that. Only that love, laughter and UNITY.
Yes, I know how truly priceless this man is. I wish I could clone him and give them out to a few of my friends. And trust me…I make darn sure this man knows how much I appreciate him.
But they have not perfected cloning yet…not even close. So I am powerless in that way to help other parents that I care about…and especially their precious babies. You see my heart may go out to other parents…but it is captured and held in the precious hands of the little ones.
Last night I found myself on Facebook responding to a friend in crisis even as the storm around me raged. The most dangerous thing that assails us as parents of autistic children is…
Expecting our children to be a certain way…not even just ‘normal’ or neurotypical…but even in terms of believing myths that still exist about autism itself.
Expecting that a diagnosis will change anything…people’s attitudes, services, nothing. It is just a word…a label. Yes, it can with support and acceptance become a positive part of their identity and not something to be ashamed of. But that takes support and even then can take years.
Expecting a ‘cure’ or the latest therapy to be the answer…as Pankwake says…you can’t cure awesome!
Expecting neighbors, friends and family to understand…some people WILL get it once they are exposed to the reality and not myths. The world honestly is changing…I have seen that lately in eyes of people. But hear me now…some people will NEVER get it…no matter what. Cut them from your life…even if it is your own family. If you can’t do that…ignore them. If that does not work…come out swinging and beat them down. It is all those kind of people understand. Sorry to say.
And most especially…don’t expect government, doctors, ‘experts’, or charities to rescue you. It is not just that they won’t…they honestly can’t. Government is about providing equal/same opportunities for all. But the problem is that what your child needs may not be what PanKwake does. So these people have crafted services that are supposed to fit all…but do not. And yes, while personal budgets were intended to rectify that situation…the social experiment is failing.
And sorry if I am about to offend anyone…but this analogy is too perfect…
You can wait on that top floor of a burning building for the firemen to come and get you…or you can start walking your butt down the stairs. Holding tight to your child, your partner, your family and friends.
Can I guarantee you that you will all make it out that building alive? No. And even if you do…you will smell of smoke, your eyebrows will be singed off, and you are likely to have breathing problems for the rest of your life.
But the cold, hard truth is…
Your best chance for survival at all is to save yourself and your child.
Give up all those expectations…and look for a way out. Stumble through the dark…I did. Follow any ray of light…I have. And even when you stumble and fall…because trust me you will…get right back up as quickly as you can and keep going…we do. And never, ever, never give up hope.