There is a third member of what we call Team PanKwake. Though she is not family, PanKwake’s carer Mog is indispensable.
Actually Mog is PanKwake’s third carer. Her first two where in London. Linda, her very first, was a neighbor and family friend with twin daughters just about PanKwake’s age. We met them in the tiny park just behind our flat. Because I home educated PanKwake…and with the sensory overload of autism…I needed help a few hours every week so I could run errands. She stayed with us until family issues became too much…over a year.
By that time, Regina had come into the picture. She was young and enthusiastic. She was going to university studying education along with Mere-Mere. From the moment that we first met her on the street with PanKwake’s big sister there was a bond. Oh the elaborate role play games those two got up to. There was this tiny Barbie baby that PanKwake named Baby Niecey. She was half vampire, half witch, part demi-god and I honestly forget all the rest…very powerful baby that ran the whole show. It was awesome!
And of course, storytelling and role play like that are important pre-reading skills and part of PanKwake’s home ed. The only problem was the number of meltdowns before Regina came. You see PanKwake had to have EVERYTHING just perfect for her role play. With her visual memory issues which mean she likes to have all her stuff out and around her or she forgets she has it, her Pink Palace was sometimes a disaster zone from one Regina day to the next. And goddess forbid if she misplaced something important among the clutter. Oh the number of times I was searching (and cleaning as I went) that room in the middle of the night. But she learned so much.
Oh, and the leg game. I must not forget the leg game. Transitions are especially difficult for those on the autistic spectrum. Don’t get me wrong…it is hard for any child to go from doing some thing fun to the next thing. But for those with autism? It is one of the times when meltdowns are most likely. Saying good-bye has ALWAYS been really hard for PanKwake. She took to wrapping herself around Regina’s leg. I had to then pull her off. It was a fun game and helped her to make that transition more easily.
So when Cookie Monster and I decided…with PanKwake’s input of course…decided that she and I would move to Swansea with him, we knew we had to find a new carer…ASAP. Actually, we found Mog before we moved even. We had been looking and asking friends about their nieces. But no luck. We discussed bringing Regina up for the weekends even…at least until we could.
Then during our trial period…a month long stay to see if this was going to work for everyone…we were invited to some of his friends’ house for a barbeque. They too had a daughter with high-functioning autism just about PanKwake’s age. That is where we met Mog. She had worked with that little girl as a teaching assistant in school…and occasionally babysat for this couple.
Even before she could sit down that night, she was accosted by those girls…both of them…PanKwake and her new friend. The way that Mog laughed and bargained with one another! Cookie and I looked at one another and said…we have to have her.
Though she did come over the next week, bringing her CV, her criminal background check and an inch thick notebook of all her certifications, we had pretty much hired her on the spot at that party. And she has been PanKwake’s carer every since.
And if that inch thick notebook was not enough, the woman has gone back to university and is working on a post-grad diploma…IN AUTISM! Can you say…over-qualified?
Actually more like perfectly qualified. Though it has not always been easy for Mog. Having worked for over a decade in schools with children on the autistic spectrum…well, politely speaking, I do things VERY differently. That has not always been easy for either of us…but I take the time to explain to Mog why I do it this way….and she has caught on darn fast.
Her role in PanKwake’s life is very different from Regina’s…or Linda’s. She is all about the tech. Computer games…and PanKwake’s fav…shocking Mog with the latest YouTube videos. Especially the disgusting things that The Will It Guys eat. Oh and swimming…we take Mog with us to the leisure centre when we do that too. It is great sitting in the hot tub while she runs around the pool after PanKwake. One great advantage too is no more meltdowns when we can’t find Baby Niecey.
Oh, one thing…I have NEVER had any help from the councils to pay for any of it.
I know that lots of parents with children on the autistic spectrum spend months (over a year) jumping through hoops, ticking boxes, begging and pleading to get even the three or four hours of respite that I started out with Linda. I too tried that…once upon a time. But as with the schools, I soon discovered (though not soon enough) that it is simply easier to do it myself.
I am sure that some of our friends who know us and Cookie think what a lucky woman she is to have it so easy…but the truth is that even before I met Cookie…on PanKwake’s DLA (disability living allowance) and my carer’s allowance…I provided everything that my child needed…including paying for her carer’s out of pocket.
As with home ed…and everything else in life…the more RESPONSIBILITY you assume, the more privilege you have to do it the way you want…or need to.
Of course, part of my self-reliance is owed just being American. We do not see the role of government in quite the same way. We are more accustomed to doing whatever it takes to things done ourselves…without either help or interference from Big Brother. But even then…I may be extreme in this. That is due to my own personal beliefs as a Transcendentalist…a major tenet of which is self-reliance.
But I better get off here now…Mog will be coming shortly. And this week especially we are eternally grateful to have her in PanKwake’s life…and ours. With the pending move to #HomeCrazzyHome, she is working OVERTIME.
A huge thanks to…
Linda…your friendship and support will never be forgotten.
Regina…your sweetness and calm were just the balm that PanKwake and I needed then.
…and of course, Mog…how would we do it without you?!?
Home ed is not something you do in a vacuum. But more about that…tomorrow.