Today I introduce you to PanKwake. First of all…relax. I am not THAT crazzy. I did not actually name my poor, innocent baby…PanKwake. But for child protection reasons, I do not refer to her by her real name on insecure internet sites.
But why PanKwake?
She choose it herself. A couple of years ago when she discovered the wonderfully crazzy world of YouTube, one of her favorites was @IHasCupCupQuake. She absolutely loved her. And along with @StampyCat @PopularMMOs (aka Pat and Jen) @Aphmau @ShaneDawson and too many others to name, PanKwake was inspired to become a YouTuber…a goal we are still working on.
She insisted that she wanted to become IHasCupQuakeJunior. I explained about copyright and that name was reserved if CupQuake had a little girl. Besides…she will not eat cupcakes. Only occasionally the icing off the top. But she does love pancakes…American-style of course.And so…PanKwake was born.
Actually, she was born in early 2006 in Los Angeles. We moved to London to be with her father when she was baby. But from the very beginning, I knew something was DIFFERENT with my child. I mean after five others…one of whom was special needs…a Mom just knows these things.
But getting the doctors and other stupid ‘experts’ to see that was a battle that I fought for the next eight years.
From birth, PanKwake was high needs. If she was not asleep…something she did a lot of…she was crying. Only movement stopped it…dancing, pushing in the buggy or best of all the baby swing. Of course, I had not heard of #SensoryProcessingDisorder or SPD. I would not for another five or six years. But by the time she was two, I was using the Big A word… #AUTISM.
Her cry was a thing of wonder. The only way to describe it…like someone had poured scalding hot water all over her. It was the loudest, high pitched, shrill thing…it still is. I lived in fear that the neighbors would call social services. But we knew them…and they came to know that was just PanKwake.
When she was two and a half, PanKwake had her first seizure. She was just beginning to drift off on Mere-Mere when her eyes rolled back and she started to jerk. Pretty scary for an eighteen year old all alone with her baby sister…and afraid how she would explain her baby sister’s death to me. But that moment would be the impetus for her to go to college to study early childhood and for her work with other special needs children.
Despite family history of childhood epilepsy on both my side of the family and her father’s I could not convince the doctors that something was seriously wrong with my child. Not even a second seizure at nursery school nine months later made them take notice. They actually sent us on our way to holiday back home to America…three days later. Within a week there, she had her third serious seizure. The American doctors diagnosed…epilepsy. When we got back, it was another seizure…her worst. And so began our drama of doctors, tests and the fight to get the help that my PanKwake needed.
And every single step was a battle. A never ending nightmare that included more seizures while the doctors told me I was imagining things…practically accused me of Munchausen by Proxy. One nasty witch (who inspired a character in one of my books) actually refused to sign for DLA (disability living allowance). She told me…’You don’t know what it means to have a special needs child.’
Through all that was a miscarriage, a failed marriage and a two year battle with depression and anxiety. But I would not give up. I could not. I knew that my daughter’s very life depended upon me.
PanKwake’s ‘education’ began at three years when she started attending the community nursery that was just a short walk from the counsel estate where we lived. They were brilliant. The manager became not just my ally in this war but a dear friend who was one of the biggest resources during my battles with depression. She recognized that something was not quite ‘right’ with PanKwake.
And she did her best to get us the early interventions that might have taken us down a different path. But an hour long one-on-one observation with the counsel’s Early Years SENCo (Special Educational Needs Coordinator) failed to reach the level necessary to initiate the diagnosis process for autism…which she and I both knew was the right fit. the first of many other missed opportunities….
That nursery did all that it possibly could to help PanKwake…and me. That SENCo did authorize the counsel to pay for PanKwake to attend a full-day…to get her ready for Reception. They worked hard to her to sit at the table during lunch…to wear shoes (if not socks)…and to tolerate other children better.
But her ‘graduation’ from nursery was a perfect example of what we were up against. While the other children stood on stage and sang their songs….walked proudly across the stage for their ‘diploma’…PanKwake and I hid in the hallway. It was too loud…too many people…too many strong smells from the lunch that would be served afterwards. Just too much for my child.
And things only got worse at school…but this is probably a good place to stop. I’ll tell you more when I talk about our bumpy road to #HomeEducation.
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