Okay so I might as well come clean and tell you how we put it all together…
- Unconditional Love
…and took CRAZZY to whole new level on Tuesday.
To set the stage…we were having about 30 people over on Thursday for Thanksgiving. I had done all my shopping and the groceries were delivered on Monday. I had already put the turkeys and ham in the ovens.
BUT looking at my master list of To Do’s I am already behind. The carpets had not been cleaned. Part of the house was still messy. And no, PinkTopia STILL was (is) not finished.
BUT it was relatively clear…and Google said it was going to rain for the whole rest of the week…until Sunday. And ya’ll know how much PanKwake LOVES her Winter Wonderland fun fair.
I was torn…I knew ALL the things that needed doing before Thanksgiving. But this might be the only chance until the weekend. AND I had promised her we would go. What is even more awe-inspiring…my beloved Cookie Monster was the one that was nudging me to take her.
So after a quick final trip to the shops for the few things I had forgotten, we got ready. I asked her new babysitter (she no longer needs an actual carer) if she could join us at the fun fair instead of coming to the house. She could.
So pack up with a plan…fun fair, climbing wall, and then pool at the Leisure Center (which is the ONLY way I get PanKwake to bath/shower). I have her Maclaren Major buggy…with its huge rain hood in one bag…and her LC bag with trainers for climbing and pool stuff in the other.
PanKwake even agreed to take a taxi. She HATES cars/taxis. She gets motion sick in cars, busses, and trains. Goodness only knows about planes but we will find out next year when we take her to DisneyLand Paris. But we made it.
As busy and crazy (that one does not have two Z’s cause it ain’t the good kind) as it was on Saturday evening when we took her…it was that quiet. It was grey skies and starting to mist already. You actually had to hunt down the ride operators as they were manning two and sometimes even three rides each.
PanKwake did one spiny ride by herself and then we went out front to wait for ProgrammerPrincess, her new friend by the hour would be an even more accurate description than babysitter. Then they were OFF…on the craziest rides they could find. I handed P-Princess the bag of tokens and walked away. I CANNOT even handle watching PanKwake on those crazzy rides.
I walked around…getting me some food and buying the very last two vibrating, lighty ball things they had…to replace the one that we had gotten before which is in the process of breaking. And goddess knows…what would PanKwake do if she could not roll the darn thing into the bedroom just as I was falling asleep and prank me very much.
Then they wanted to go ice skating. It had started to rain a bit heavier now but PanKwake was NOT to be deterred.
UH-OH…crisis time. I had forgotten socks. You see PanKwake…all her life…will NOT wear socks. She is not a big shoes fan either but she does manage her Crocs when we go out. Yes, pink, plastic with holes in them Crocs…even the dead of winter…without socks. But it is about Deep Understanding of the sensory issues of neurodivergence…and Respecting those.
BUT she will wear SPECIAL ones…usually pink stripped or hearts from the pound store. Only for things that she MUST. Health & Safety. Trampolining. And ice skating. Now they sold socks there…but not only were they precious but I just could not tell. Would PanKwake wear them? Or was I off to the Pound Store and hoping they had her special ones? But she did.
I am noticing a trend lately. And touch wood…she is getting better at such things. While she continues to have sensory issues, she is less stringent with them. She is sending back fewer and fewer bowls of potato because they do not have enough…cheese…or salt…or sour cream. She is letting me make homemade chocolate icing for her Chocolate Birthday Cake Pies. And now she was wearing ‘regular’ socks. Heck, these were lined even…a bit thicker.
After socks and skates are on then she and ProgrammerPrincess are off onto the ice. And within a couple minutes of them getting out there, it starts to piss down rain…like only Swansea can. Do you understand? It is almost dark, really cold, and now it is pissing down rain. P-Princess in jeans and a light jacket. PanKwake in her skirts…not even her leggings this time.
And they WON’T come in. They are not giving up that easily. There is an inch of water standing on the ice and they are laughing and smiling as they skate around. Don’t believe…see for yourself…
I finally did manage to get them to come in…maybe five minutes early. But PanKwake just had to do one more ride. I left them to it and walked over to the Leisure Center to book climbing and swimming.
I did manage to get them to drink a HOT chocolate before getting on the climbing wall. You see ProgrammerPrincess has one other key skill set besides being Crazzy enough to get on all those rides with PanKwake…and learning new games. She is a certified climbing instructor.
So I was really hopeful that PanKwake could finally conquer one of the other walls. She is so incredibly good on the green/easy one, but she just can’t seem to get it with the red one…the next level up. I realize it is the Pathological Demand Avoidance. But I am still human…I want PanKwake to realize she really can do anything she wants.
And this time, not only does she have ProgrammerPrincess but they are the only ones on the wall. So the young man who mans the wall is also able to focus only on her. She has TWO instructors. And still she gets half way up…and stops. Repelling off it.
I have to remind myself…of everything I preach to ya’ll. PanKwake will or won’t do it…in her own time and way. Probably when I am not around to see it.
One of the things that I have learned with this little human…she really can teach herself anything she WANTS to learn. She taught herself to ice skate…in less than a month…going just once a week. She taught herself sequencing (before/after and now/next/then) in three days…after six weeks of failed speech & language therapy. She has finally conquered the alphabet…thanks to gaming. And one day, she will teach herself to read…to whatever level she can achieve with the dyslexia.
So I refuse to worry about the red wall…I won’t spoil climbing for her. The way that I did her bedtime stories…by pushing the reading.
After climbing ProgrammerPrincess had to get back to her university. I was a bit worried that PanKwake would balk at the pool…and after all getting her a proper ‘bath’ before the Thanksgiving party was part of my motivation for doing all this. But she did not. She even seemed to be focused on making certain that she was actually clean.
The thing is…it is now 6 PM. And we still have to get home. Less than a mile mind you. But in the cold, pouring rain, dark, and pushing a buggy. I made a choice…for right or wrong. I had been successful once before in bribing her into a taxi. I was going to try it again.
And so we were off to the Tesco toy section. We spent a good twenty minutes, maybe half an hour, as she first went over all the options. She laid four or five down on the floor as the ones she was considering. Then it was back and forth. This or that. She would ask my opinion…then not take. She is great at seeing all the pros and cons. But not so good at making the final decision.
But at last we did it. She choose two and we started towards the front to the check out. Unfortunately, there was a display of MORE of those same kinds of toys…right in front of the check outs. Someone knows their merchandising. So it began again…with her laying out new ones. In the end…I had to buy three not the original two.
It was the most expensive taxi ride ever…almost £50 of toys. To bribe her into a three minute cab ride.
But the alternative was forty-five minute walk in the cold, pissing rain…UP HILL. My arthritis was already bothering me…and I have two more days of serious work ahead of me.
This is not the first time though. Or even the worst. There was the time that we went to the Natural History Museum in London. We got there in twenty minutes on the Tube. But getting home took us five hours, four busses, and lots of walking.
But I do all that…to give her as ‘normal’ a childhood as I can. To let her do as much as she can manage. Especially things like the Winter Wonderland that she loves.
When we finally did get home, Cookie Monster was working. I climbed the stairs all the way to his office for a CWTCH. And do you know what this wonderful man said to me when I told him that we had taken Crazzy to an all new level…
If she had fun that is all that matters.
Oh, and he did not bat an eye when I ordered Chinese for dinner…that was my reward.
I am incredibly blessed…not just to have the means to do this trip…but more importantly a partner who sees the value in it. I know some people will think but I can’t afford that…thing is that I did and bought for PanKwake even before. When it was just the two of us…on benefits…in a tiny London flat.
For where your treasure is, there your heart will be also.
(Matthew 6:21 New International Version Bible)
Is it truly all that Crazzy to put the needs of little humans before your own? To understand, accept, and respect the sensory issues like socks, water, and motion sickness that go with autism? To dedicate your life to making her dreams come true?
If it is…then I prefer being Crazzy…and this year and every day I am incredibly blessed and thankful to have a wonderful partner who never berates me or makes me choose between him or PanKwake. I did all of it alone for five years…walking London streets…and yes, sometimes I did cry when PanKwake could not see or hear me.
But the past year and a half with Cookie Monster laughing and loving through it all…well I know exactly where my treasures are…in these incredible people that I love and am humbled to be loved in return.
So, yes, we may have taken Crazzy to a whole new level in our #HomeCrazzyHome…
But I would not have it any other way.
Oh, and we are all blessed to have great friends like SistaSarah and ProgrammerPrincess who go along with the crazzy. Off now to clean enough space so that SistaSarah, the little humans and I can make sandwiches to homeless with the Thanksgiving leftovers.
Oh, and no one even mentioned the carpets not getting cleaned…I think we are blessed with loads of wonderfully Crazzy friends. As we say where I come from…
Dem’s gooooodd people!