I am exceedingly late getting to my writing today. I probably won’t get much more than this blog written today.
Because while I woke up at 5 a.m. as usual, much of the past four hours have been spent with @PanKwake.
But in my daily quick check of the news, I noticed this one:
I was dubious about even reading it as more often than not, it is some whiny-ass parents complaining about how tough life is for them because of their ‘horrid’ autistic child. This one seems not to be as bad as I expected, but to be fair, I am not doing more than scanning articles quickly these days.
But after four hours of seriously stimulating conversation with my delightful #ActuallyAutistic teen daughter @PanKwake, headlines like that are a reminder of how differently both of our lives might have turned out – if I had kept listening to the ‘experts.’
Don’t get me wrong, I made that mistake for about the first eight or nine years of her life. And I can identify with the pain of other parents as I constantly wore the bruises from violent meltdowns.
All the advice from those experts basically follows the ABA (Applied Behavioral Analysis) line of thought to one degree or another. While the stringent form of that ‘treatment,’ which utilized extreme forms of punishment such as electroshock as well as withholding food and affection until compliance is achieved, has fallen out of favor as abuse, its descendants still send the clear message…
Autistic people are broken.
We need to fix them.
By making them ‘normal.’
At all costs.
Oh, the hours of therapy that I inflicted on my poor child. I deeply regret that. The list included: music therapy, crano-osteopathy, reflexology, speech and occupational therapy, as well as one that I forget the name of but which was a mild form of game playing ABA designed to make her conform to what society expected of her.
It was not merely the therapies themselves that were the problem. Many of them lasted less than half an hour. The therapists were all lovely people but misinformed.
The problem was except for some speech therapies, all of those required leaving the safety and comfort of @PanKwake’s home environment to go somewhere for something imposed on you against your will, something that you did not even enjoy.
The experience usually went something like this:
I would use our visual schedule to prepare her for the event. Sometimes beginning that morning and sometimes days in advance. What I did not realize was that in the case of Pathological Demand Avoidance, that more often than not increases anxiety rather than alleviates it. After all, according to these ‘experts,’ PDA is not a real diagnosis anyway, and all autisms are the same.
I would try to get us ready well in advance. But no matter how hard I tried, I usually failed. @PanKwake could delay no matter what. I often had to ‘bribe’ her with things to achieve compliance – that is how we ended up with so many toys as to be called hoarders. But even that often failed.
Getting anywhere, even the fifteen to twenty-minute bus rides to most of these places, was a nightmare. London busses are crowded, smelly, and the only thing nastier than the bus is the people on them. I remember one time that we had to get off a bus because a woman four rows back was eating an orange. @PanKwake, who liked oranges, could not tolerate the smell. We were late, of course.
Even if we did manage to make our appointment, her compliance was horrid. The cognitive assessment, which was supposed to take two-to-three hours in fact, required multiple appointments over eight weeks. @PanKwake ‘failed’ the ADOS (the autism test). She only made it as far as about eight or nine of the thirty activities before she crawled under the table, crying, and refusing to come out.
One of the few things I do appreciate about those ‘experts’ was the compassion they showed then. They stopped the testing, deferred to me as when she might be able to continue, then decided to call it for the day. They watched the video and decided that they had enough ‘evidence’ to give a diagnosis without inflicting more trauma on her.
Getting home was even worse. @PanKwake almost always melted down. All too many times, we would end up walking back home, sometimes as much as an hour.
What those ‘happy’ pictures don’t show is that almost every last one of those events ended in a meltdown, sometimes a violent one that put @PanKwake in danger and left me physically and emotionally exhausted as well as usually bruised.
Then I began to ask myself…
Why was I putting @PanKwake and myself through this? Was it actually helping her?
The answer was no. The compliance they wanted to force on her, and me, was not happening. And guess who the ‘experts’ blamed? Not their therapies. Certainly not themselves. No, I was the problem. I was a ‘bad’ parent.
And was that really what I wanted? To stamp out her spirit and create this obedient slave for society? Can you guess the answer to that one?
So, we began to withdraw from all the therapies and ‘experts.’ I did not tell them that was what I was doing, of course. I was not stupid. That would have raised more red flags and probably gotten social services involved – again. Instead, I suggested that we give @PanKwake a bit of a break. Some downtime from all the therapies and activities.
Since the ‘experts’ could not seem to bend either of us to their wills, they agreed that perhaps that was a good idea. They could move on to other people who needed their services more. Were a better use of NHS’s and CAMHS’s (Child and Adolescent Mental Health Services) limited resources.
Then Alan came into our lives. He and I agreed that we would not seek involvement with the ‘experts’ here. It is a decision that I do not regret. One that this morning proves was best for all of us.
Was it instant? Did @PanKwake just stop melting down?
Ha-ha. We had just moved up here, and I wanted to impress his friends, so I threw a birthday dinner party for him. @PanKwake was lovely, upstairs with her new carer during starters. But during the mains, she came into the dining room with balloons, demanding attention. We ended up in the kitchen, blocking the doorways while she exhausted herself, kicking and screaming on the floor. Three adults – one a professional carer and two mothers of autistic children. Bullying one child. It is not one of my prouder moments.
But as I relaxed, with Alan’s love and support for both of us, I began to make better decisions. I started to see somethings…
Autism is a difference in sensations – Imagine being forced to walk around all day with a tiny pebble in your shoe. It is an experience that most of us are familiar with. We stop and take it out as soon as it is safe to do so. What if you could NOT take it out? What if that rock was part of you? That is what autism is like. That is why @PanKwake really could not stand the smell of that orange four rows back on the bus.
Autism is a communication challenge – It is not just that those sensory systems may be overwhelmed (or underwhelmed), but that you cannot find the words to communicate that to others. For some, that can mean completely non-verbal, but even for those like @PanKwake, who can physically speak that is not the same as communicating – especially if you are under extreme stress.
When I realized those things, I began to change how we did things. It started with a simple idea that Dr. Ross Greene describes as:
Children do well when they can.
Your child is not out to get out. They are not trying to play mind games or win. They are not asserting some control over you. They actually want and need your love and approval. And if they are acting out, it is because something is causing them pain – physical or emotional. It is because they cannot comply, not will not.
So, I began to adopt a strategy I call –
Setting her up to win.
Everything we did was her choice. Even then, we had an exit strategy. Because we can all overestimate what we can manage. I do that almost every day.
I gave @PanKwake the sense of control that she needed. Yes, I still found myself walking home with her from some activities. Sometimes a rather long distance, in fact. But those bribes went down drastically. So, did her meltdowns.
As she matured, she began to take more and more control over the things those decisions herself. I would explain the situation and her options, pros and cons of each. She would make her choice, and we would have a backup plan, just in case. I remember the first time that, rather than having to bribe her to take a taxi home, she asked for one. We often do that now. Walk to where we are going but get a cab home because she is tired and just wants the safety, peace, and quiet of her @HomeCrazzyHome.
We did a week in Disneyland Paris, including four train trips and an unplanned extension of the trip because Alan got food poisoning. @PanKwake did NOT meltdown once. Not once. She made the decisions of what she wanted to do and when she had had enough.
I watched other autistic families struggle. Once even witnessing, a dad restrain his violent son as he melted down.
And I cried.
I cried for the physical and emotional pain that child was in.
I cried for the heartache of those parents, who probably felt like every single person in that park was judging them as a parent.
And I cried for us. Because I knew if I had kept listening to those ‘experts,’ that would be us too.
I cried because no one reads these blogs. No one hears the truth. They all place their trust in those experts when it only takes four things to make all the difference to your child…
Just those four things. Things that honestly all humans crave and need.
If you give those four things consistently, then things will improve. Maybe not overnight. But over time. Slowly, perhaps so gradually, you don’t even realize at first.
Then one morning you will spend four hours in a deep, thought-provoking conversation with your child and you will realize –
I like this person.
I really, really like her. Even if she were not my child, this is a human being, I would want to know as a friend.
The beautiful thing about this crisis is…
Perhaps for the first time in years, you and your child are isolated from all those ‘experts,’ the SENCOs, educational psychologists, doctors, and therapists. You don’t have to be anywhere or do any of their therapies.
And there is no one in your home to judge you…except your child.
So, if you are frustrated, if you feel that those therapies have not worked for your child or you the way you thought or hoped, then ask yourself what do we have to lose if we give this Crazzy lady’s ideas a chance?
Can it get much worse if I forget all those expectations, the shoulds and musts that all parents believe they have to enforce because it was forced on them? So, what if my kid spends all day on a video game? What is he hurting? Heck, if she does not take a bath, what’s the worse that can happen? She’ll stink. But so what?
Would the stink be worth it if you no longer faced those meltdowns? By the way, this is a real-life example from our @HomeCrazzyHome, the one area in which we continue to have an unresolved power struggle. Usually, we could motivate @PanKwake to wash up and change her clothes if friends were coming over, but that is no longer an option. I actually resorted to that old standby of bribery this week. Build-a-Bear for changing her bedclothes, washing up, and changing her clothes. Expensive but worth it.
I hope at least one parent out there will consider this option. Like I said, understanding, acceptance, unconditional love, and respect are basic human needs. It is a strategy that works with ‘normal’ children…and partners too.
Oh, it even works with yourself…though I am discovering that one to be a bit more challenging. Because as I discovered along the way, it is not just @PanKwake, who is #ActuallyAutistic. I am as well.
May the Goddess bless you with Her unconditional love,
From our @HomeCrazzyHome to yours