Yesterday was great. PanKwake woke almost like nothing had happened. We laid in loads of food that she has not tried in a while. I blogged and managed social media in the morning then napped in the afternoon. In fact, we almost missed Pineapple’s play that evening.
I’ll be honest…I was not sure about going at all. It meant a cab ride…both ways. A crowd. Noise. All the things that usually set PanKwake off. But she wanted to go. And she stuck to those guns even when it meant we had to rush…another thing she usually hates.
In the end…almost perfect AGAIN. She did complain about being hungry. But Pineapple’s dad ran me to the store in their car for snacks. And PanKwake made the whole play without melting down or being disruptive. It was another milestone for us.
Big CONGRATS to Pineapple for a GREAT performance. She was an awesome mother for Little Red Ridinghood.
And to PanKwake…you did good, girl!
Too bad Mommy can’t be as easy going. You see I stirred up a hornet’s nest on social media with my radical ideas about No One Is Coming!
The thing is people sometimes miss the whole point…
That is a GOOD thing!
The truth is that the ‘experts’ don’t have the answers to begin with. All they have to offer more trouble than it is worth. Because what works for one child won’t for another. And what was perfect for PanKwake last year is not this year.
The most powerful and effective help/support out there is…
We don’t need some a$$hole ‘expert’ who has become famous and made a fortune off of selling his books on autism to tell us how to manage our child. Here’s a secret, folks. He DON’T know. The man has never…not once…been up all night with his autistic child. nor has he air pumped for the smallest accomplishment that every other parent takes for granted. He don’t know sh!t!
That organization that you listen to so damned much? How many of its Board/committee members are #actuallyautistic? Has it ever had a Director who was? A senior staff member at all? How much $$$£££ did it raise last year? How much government $$$£££ did it accept? How much went to actually helping/supporting families? I mean DIRECT payments to the #actuallyautistic or their families? How much to MAJOR marketing campaigns that perpetuate MYTHS and misconceptions about autism? How much of their funding came from suppliers of products for the autistic? What about conflicts of interest? Have you ever once heard these people have a POSITIVE thing to say about the #actuallyautistic?
The schools? Have you ever seen one even one that will guarantee in writing…legally binding…a bully-free environment for autistic children? That will educate the ‘normal’/neurotypical children about autism…the wonderful, interesting and fascinating things about #actuallyautistic individuals? That will put the needs of the individual child before those of the system itself?
Support services like occupational and speech/language therapy or social services? They are working off of information that is decades old, outdated, and often counter-productive. Even good people, who went into it for the right reasons and want to help…get caught up in the bureaucracy and their hands are tied…or they get fired for doing the right thing and replaced with someone who will do it their way.
After-school clubs, respite programs, and so many more…are under-funded, under-staffed, over-subscribed, and once again…operating on information that is out-of-date. And too often they are run by those same ‘charities’ I talked about earlier…with the same problems.
We are looking to the WRONG people, folks!
The system is broken. It has been for a very long time…maybe forever.
The truth is that WE have all the answers/solutions within ourselves.
But that means we have to grow-up the f-up and ACCEPT RESPONSIBILITY. For ourselves, our children…and OTHERS!
But that is the fastest, safest, and most reliable way out of this burning building.
Oh sure, you are more than welcome to stay right where you are…complaining about how the firemen SHOULD come into a burning building to save you. It’s their job after all. But here is a bloody hard truth for you…if the firemen all die saving you then what about the next fire. They are taught to protect themselves…protect the SYSTEM first. You can complain about how wrong that is too. About how government has a responsibility to protect people. How we need to change all that.
And all around you the flames are getting hotter and higher.
It is not just autism, folks. I can give you example after example of the failings of government and charities…big ones. Natural disasters where people DIED waiting for help when they could have done for themselves. Heck, you can watch it every Saturday on the Sy-Fy channel.
But the truth is…whether it is Supervolcanoes, alien from outer space, or Sharknadoes… the answers come from within us. From helping one another. Not from governments…or big charities…or ‘experts’.
Us! Me! And YOU! And especially OUR CHILDREN!
They are the future. The last, best hope of this world. I believe they hold the answers within them. That they can be the difference.
But not if we allow those ‘experts’, charities, government and schools to extinguish their flames. Not if we listen to others. Not if we…their allies and protectors…believe the same old bullsh!t that has been spread for generations. None of them offer the one thing that PanKwake needs most…that I believe ALL our children do…
But that means we parents…neurodivergent or neurotypical…must ACCEPT RESPONSIBILITY to protect and train them…be that as Dr. Xavier or Magneto. Or sometimes I bit of both.
Mutant and PROUD!