And learned loads of lessons on this adventure to Legoland and Autism Show London.
Yes, we had meltdowns…two on the trains and a half of one at Legoland.
What has shocked me a bit is…how long it is taking PanKwake to recover. She still is not there yet. I was up and down with her most of the night. I have spent close to £100 on iPad games and Robux since we came back. And chased gnats/flies around her room at 3 a.m.
In short, the least little thing will set her off.
Because with Pathological Demand Avoidance, you must constantly switch things up…do things differently…and realize that what worked yesterday may not today, a markedly different strategy from other types of autism, I had not truly appreciated just how important ‘routine’ still was.
Though PanKwake would fight against strict structures such as those ‘normal’ bedtime routines proposed a couple of months ago by her pediatrician, I had not realized how things as simple as her own bed, knowing her way around Swansea, and just having her things around her were to her a routine of sorts.
Of course, I knew that the trains and the transition at the end of Legoland could be triggers. Other than walking in her buggy or a roller coaster, there is no other form of transport that works for PanKwake. To make matters worse, she had not been on a train since we moved up here almost a year ago.
So it was no surprise that she had a meltdown within half an hour of departing Swansea. It was not a very violent one though. More like an irritating mantra of ‘I’m bored’ that lasted for twenty minutes to half an hour before she fell asleep. After an hour nap, she woke like nothing had happened. Happy as Larry as my Brit friends would say. She made the rest of the train journey…another 45 minutes to Reading and then another train for almost an hour…without an incident.
And Legoland? Well, how many neurotypical children meltdown after a long day of fun? Especially when it comes to getting that one last thing they wanted…in PanKwake’s case a balloon I had promised her but forgotten. A huge Thank You to Nick the Balloon Man for taking me all the way back to get her one. It made all the difference. She held onto that thing for the next two days and it is still hanging around. Oh, and I watched plenty of parents ‘melting down’ by that point too.
As for the train ride home…she did sooooooooooooooooo well…until the last half an hour to 45 minutes. The train was running late. Gave us NO updates so I could not even tell her how much longer it would be. And was filling up with drunks on a Saturday night.
Thanks to the wonderful man who sat behind us for helping to distract her with questions about her YouTube channel…and pounding the dust out of the seats.
And to the nice gentleman across the aisle who endured the whole trip from London with Little Miss Chatterbox…without a single comment.
And to the gentlemen behind him…one of whom was giving his friend a running commentary on how PanKwake was not being naughty, how she could not handle the situation, and on how I was doing everything I could in the situation. I truly appreciate that you took the time to accurately educate others.
But yes, Mama Bear did have to rear her nasty head to the drunk who shouted out for PanKwake to sit down and shut up. But I think my response nailed it…
She is autistic. She does not have a choice. You are drunk. You did!
He shut up after that. Though Cookie Monster says he was about to show his stupidity again until his girlfriend gave him…one of THOSE looks.
Overall, I think we did pretty well. But more importantly we learned some lessons. Like don’t go a year without getting on a train…
I have not been a big fan of behavioral therapies that force the child out of their comfort zone. And I still am NOT. At the same time, when I was clinically depressed Cognitive Behavioral Therapy was much more effective than psychotherapy. Tiny steps to push yourself can in the long run make a huge difference.
What I am against though is the non-consensual nature of most therapies used with autistic children. Parents, schools and ‘experts’ forcing their definition of ‘normal’ on a little human without their understanding or consent. Just making them do it.
I won’t go down that route. Instead PanKwake, Cookie Monster and I will discuss it. Then set small goals with huge rewards at the end.
Our first opportunity is less than a week away. Our wonderful #homeed group is going to another, closer theme park. Folly Farm is only an hour by train from us…and then a short car ride or taxi. PanKwake insists that she WANTS to do it. After all this place has all her favs…a farm, a zoo, adventure playgrounds and a faire. How cool is that?
You see while I may be expanding out of our comfort zone, my guiding principal is the same…
Not forcing PanKwake to do what I or anyone else wants…
But enabling her to do and be what she wants!
Then again that is what ALL children deserve even neurotypical ones.
Tomorrow we will talk about the surprising lesson of Autism Show.
Leave a Reply