Why is everything a battle?

I should be getting a shower right now. We have another Team Around the Child (TAC) meeting this morning. But I lack the will. After a year of fighting to get a personal budget so we can afford respite carers for PanKwake, we have hit a road block.

The same road block that so many families face…IGNORANCE. Despite all the political rhetoric about change and making sure that those who truly need it get the help, the reality is that these decisions are left in the hands of bureaucrats who have no idea what life is like for our children and our families. How could they when many do not have children at all, and even if they do, they are being raised by nannies or attending posh state schools…and almost none of them face the challenge of raising a special needs child…alone.

To make matters worse, they seem to be so tight fisted that you would think these public moneys come straight out of their pockets. What are a few pounds that might allow an autistic child like PanKwake to have a nice day out at the zoo or aquarium? How many of them go into their overdrafts each and every month to provide what their child needs? How many of them find themselves stuck in inadequate housing, unable to move, to give their child the freedom of a garden in which to run and play? How many of them are late or cannot pay bills at all because it was their child or the bank?

Even a simple shopping trip with PanKwake can be challenging. Yet wee do not deserve funding for respite care so that MomKwake can shop in peace and PanKwake play with a trusted, reliable and caring adult?

How many of them are up half the night caring for their child? Then up early the next morning to write or clean the house or any of the dozens of things that must be done to care for a child like PanKwake. How many of them live on the edge of exhaustion because they spend hours upon hours in the park with their child to give him the proprioceptive stimulation and socialization that he needs? Do they even know those words?

They are ignorant of all that and more…yet they are entrusted with the futures of children like PanKwake. I challenge any of them…walk one day and night in MomKwake’s shoes…see what it actually takes to care for PanKwake. Then tell me that we do merit their help.

Hello World!

This blog is the journal of one bright and precocious nine-year old little girl living with high-functioning autism. Every day is a struggle to survive in a world that is too loud, too bright, too smelly, where simple touch can be painful and constant motion offers her solace. This is simply…her story…please meet…PanKwake…

Why PanKwake?

To begin with she is currently fixated upon YouTube videos by Cupquake. She wanted to be Cupquake Junior but I explained that we would need Cupquake’s permission and likely she would want to save that name for her daughter. So she compromised upon PanKwake, which is actually more appropriate as pancakes are one of the three dozen or so foods that she will eat.

Why blog?

We decided to blog (and YouTube, tweet and Facebook) to raise awareness about high-functioning autism and unschooling. We do this because honestly so few people understand. Once upon a time PanKwake’s Mom dated a man in a wheelchair. She could not believe the way that people went out of their way to be helpful. But because PanKwake does not look ‘autistic,’ people can and do say the most thoughtless and cruel things. To the point that it is isolating. But we believe in the basic goodness of humanity…we believe that if they understood ‘our world’ they would be just as kind and helpful. We are frustrated that the BIG autism charities are doing practically nothing to address this issue, especially for those on the higher-functioning end of the spectrum. So we will do it ourselves…

Is PanKwake a real little girl?

She very much is…all of this is true. BUT because of the world in which we live and the vulnerability of those like PanKwake as parents we have decided to post no identifiable photographs…no face shots. We do this simply to protect our child, not because we have anything to hide.

We invite you now to join us on our journey….