Meltdown Monday Pt. 3

Today we are talking about demands….or perhaps that should be….

DEMANDS!!!!

They are constant and never ceasing. A deluge and barrage of them from the moment that we wake up…

Get out of bed. We’re running late. Put on your shoes. Feed the cat. Eat your porridge. What do you mean you don’t know where your coat is? How many times have I told you…

Any of that sound familiar?

Then there is school…

Sit there. Read this. It’s quiet time. Stop fidgeting. No, I don’t hear any buzzing. No, you may not go to the bathroom…AGAIN. 

Even on the playground with your peers the pressure does not stop. Though it may shift to a more subtle and unspoken demands to fit in. To act and behave like everyone else. To wear the correct clothes/shoes. To play the same game that everyone else likes even if you don’t.

Then it is back home to more demands…

Eat your broccoli. It is good for you. Why must I make something special just for you? Do your homework. No video games/television/computers. Get a bath. Brush your teeth. Go to bed. I don’t care if you aren’t tired. It is bed time. All the other children your age go to bed at this time. 

Are you tired and frustrated yet? Do you feel like you have no control over your very life? Someone else tells you when to wake up, what to eat, what to wear, when to go to bed…perhaps even when you can and cannot pee.

A level of demands and expectations that few adults except those in the military, prison or mental facility could or would endure. Yet our children are forced to conform to these standards ALL the time.

For the simple reason….

We are older and bigger.

That does not work in world politics….the work place….and it should not in a family either.

But there is a third type of demand that I had not considered until Jane Sherwin author of My Daughter is Not Naughty pointed it out…self-imposed ones.

I don’t know why I had not considered them before. After all I am the QUEEN of ‘perfectionism’ (which is why I have three finished books…or is it four…five…in my cloud…waiting from them to be ‘good enough’). I am the mom that PanKwake accuses of being…obsessed with cleaning. The partner that Cookie Monster must spank and tell to give myself a break.

So why could I not see that these self-imposed demands might be playing a role in all those times when I just could not figure out why PanKwake was anxious?

When Sherwin listed some of the demands that her daughter avoided…self-imposed ones…it was another light bulb moment on this journey. I mean who would believe that getting her own glass of water or turning on the television or bringing PanKwake her iPad was a ‘self-imposed demand.’

But look at it this way…if she got good at it…then it would move into that category of unspoken or spoken expectations. ‘Get your own water.’

Two that we struggle with and battle now are telling time and reading. She has built these two ‘demands’ up in her little mind to the point that it is easier to just avoid them…even if it causes meltdowns when she does not understand when her carer will arrive or I can’t be right by her side to read the Roblox chats fast enough for her.

Yes, we have carefully crafted a child-led environment and learning system that minimizes demands…spoken…unspoken…and as much as possible even self-imposed ones.

And it has paid off…big time. Meltdowns are rare now…especially big ones. My daughter is happy…and so are we. Even if it is a HUGE adjustment for the world’s most amazing man that I still have no idea what I did to deserve.

The thing is….experience has taught me….

If you take the pressure (those demands) off…she will eventually do it all herself…when she wants too….when she can tolerate it…when it is important to her. 

That is what happened with sequencing….now, next, then, first, second, third, etc. We had six weeks of focused speech and language therapy in the home. With no measurable improvement…and loads of avoidance. But the moment she got interested in a YouTuber named Aphmau, who crafts these intricate serials/soap operas using Minecraft, she mastered it almost overnight. ‘No, Mommy, that one comes after this one.’

It happened too with dressing herself. She steadfastly avoided it…until she became self-conscious of the changes occurring in her body as she approaches puberty (not that that is a good thing….but silver linings are important to hang onto, folks). Now she won’t allow any more help than laying out her wipes and clothes for her.

Of course, things are still on backwards and sometimes inside out. I simply point it out…not judgmentally, but more like… ‘Your shirt is on backwards. Is that comfortable for you?’ I have learned if it don’t bother her, then it should not bother me…and if someone thinks I am a ‘bad mother’ because of it… well, my pathological bullshit avoidance clouds up and rains all over them.

I admit that is a HUGE challenge. As a parent of a child with Pathological Demand Avoidance….you actually have to see it as a contagion. And welcome your own case of it with open arms. But when it comes down to all those spoken, unspoken and self-imposed ‘demands’ of being a good parent…the only one that matters is a happy, healthy child. And society can…

And then they can….

Because society…those people… simply cannot or WILL NOT make the effort to understand and empathize with the underlying stressors of not just demands but SENSORY OVERLOAD that cause our children to react that way…

But that is where we pick up next Meltdown Monday…

 

Meltdown Monday

At that conference I attended last week, one guy asked a question that I think plagues all parents…but especially those on the autistic spectrum (ASD)…and most especially those of us blessed with Pathological Demand Avoidance (PDA).

What can you do for them when they have a meltdown?

I will get around in a few Mondays to that, but first it is important to know/understand what a meltdown is…and more importantly what it is NOT.

A meltdown is NOT a temper tantrum.

A meltdown is NOT them testing your boundaries.

A meltdown is NOT them trying to manipulate you.

Then what the heck is it, you ask?

A meltdown is a panic attack.

Anxiety.

Sensory overload.

And that is the hardest thing for parents to get…to understand. Simply because of the intense pressure and anxiety creating stress that society places upon us to control these monsters, make our children behave.

I know. I understand. I live it.

But let me help you to put this into perspective…

Seven years ago I had a miscarriage that left me clinically depressed with anxiety and panic attacks. I was forty-five years old with a BS in Health Education, including a background in psychology. I had been through Cognitive Behavioral Therapy and learned all kinds of positive self-talk and coping strategies. I had managed multi-million dollar accounts, babysat drunk celebrities and planned parties in the country estate of Duke…

And yet one day I found myself wandering the streets of London with my heart pounding, my chest so tight that I could barely breathe, my palms cold and clammy, everything around me was painfully loud and bright…and my whole body was shaking with great sobs that I could not stop.

This educated, once highly successful woman with all these ‘coping strategies’ could NOT cope. That is anxiety. That is a panic attack. It does not matter who you are or were. Where you have been or who/what you know.

In that moment you are helpless and out-of-control. Even…especially…your own control.

So a couple of years later when I read in Understanding Pathological Demand Avoidance by Phil Christie et al that meltdowns in my daughter were not temper tantrums (I knew that much already…but not what they were) but rather PANIC ATTACKS, I cried. I sat on our couch and cried my eyes out in guilt for all the things I had tried/done to stop her.

It was one of those light bulb moments in life when I realized…

If I as an educated forty-five year old woman could not control myself during a panic attack, how the H-E-double hockey sticks could I expect a six year old (at that time) little girl to?

I never again saw or managed a meltdown the same way. It was an instant transformation to empathy and understanding.

Let me give you another analogy…

volcano1

One of my freaky fetishes is…volcanology.  Amateur anyway. One of my fav movies is the BBC docudrama Super Volcano about the eruption of Yellowstone. And if there is a documentary on the subject…I’m there. One of the first things that I learned was that beneath every volcano is a reservoir.

reserviorA couple of things to understand about reservoirs:

  1. Each volcanoes is different. Size. Shape. And even the content of the magma is different mixes of rock and gases.
  2. …but this is the important one, folks…WHEN THAT RESERVOIR FILLS WITH MOLTEN/ERUPTIBLE MAGMA, THAT VOLCANO IS GOING TO BLOW!!! There is nothing that the volcanologists can do except get any people around to safety and sit back and enjoy the fireworks. And learn…each and every volcanic eruption teaches them more about the nature of eruptions…and gets them one step closer to understanding and preparing for the next one.

What is that reservoir though? Hmmm….that sounds like a good place to stop for today. And to pick up next Monday…

What X-Men teaches us about autism/Asperger’s…

On Monday, I used this scene from X-Men: First Class when I talked about it being society and not our kids that are disabled. But this one is so important that I thought it deserved its own blog.

I think that Magneto/Eric makes a very valid point…especially for our Aspie kids. They spend so much energy, effort and time trying to ‘look normal’ that they cannot truly concentrate on anything else. I know this was especially true of PanKwake during her one year in ‘school.’ She spent the whole day trying to mimic the behaviors of the other kids that it exhausted.

To make matters worse…the one time during that long day (especially for an Aspie four year old) that she dropped the mask, she was penalized. You see this school had the absolute worst reward system on the face of the earth…only your last action counted. That’s right…one screw up and you are a failure was the message they taught our kids. They had a board with circles on it…gold, silver, green, yellow and red. Every child had a name card and the teacher would tell them to move it from one circle to another.

Because PanKwake had spent the whole day trying to ‘look normal’ by the end of the day she was exhausted. Of course, to make matters worse the end of the day was when everyone cleaned up…one of her least favorite things to do. So every day, she ended up on red or yellow so she did not get a reward. And those bullies who had terrorized her on the playground got a prize…because they picked up a couple of toys. WTF? So I was left with an exhausted and cranky child to get home. A near impossible task without a meltdown.

The thing is that is how society as a whole treats its people…’normal’ or special needs. They judge you on one single moment…and not all the good that came before. They cannot accept anything that does not exactly fit its mold of perfection. So when your ‘blue’ comes out like Raven’s/Mystique’s…even for a second…you are rejected. All you did before does not count. And to make it worse…neither does all the good you do after. That single ‘blue’ moment defines you…sometimes forever.

We need to move away from that…we need to face head on the damage that society is doing…not just to our Aspie kids but to all of us. We need as they do to reject old rules and norms that divide us…and begin to make the new norm…ACCEPTANCE.

And I am afraid that while Charles Xavier’s ideals may appeal to my optimist, my realist side stands firmly in Eric’s camp…peace was never an option. Society is too entrenched in the old ways to willing embrace anything that is different. The only way forward is MELTDOWN…like our children to stand by their sides and militantly shout, kick and scream our right to be different. As a seamstress, I know that when a garment is sewn wrong the only way to fix it is to first rip it apart.

And that is why…ADVOCACY is the only way forward. In your face, kiss my *grits*, I have the right to be here, to use this facility, to do this thing. Of course, we can first try Dr. X’s nice way…sometimes individuals themselves will accept our ‘blue-ness’ but society as a whole…will not…unless we make them. We have to demand our rights…just to exist. But then too that is our ultimate gift and purpose…to drag society kicking and screaming into the new age.

So I stand with Magneto…and Mystique…Mutant and PROUD!

Disabled?!?

I have been battling with my local community center over my Aspie (high-functioning autism) daughter attending the trampolining class for ‘normal’ kids her age even though they offer ones separately for the ‘disabled.’ PanKwake has been attending for about three months now and it was mostly fine.

Except for one mother and grandmother, who resent and complain about the one modification necessary for my child to access them…she is fixated on one specific trampoline. The other week they instigated a horrendous meltdown by putting their child on ‘her’ trampoline even though there were two others open. As a result there has been escalating issues (which hopefully are now solved…fingers crossed). The kicker…these people have ‘disabled’ children themselves…a girl with severe cerebral palsy and two boys who attend the same class that are also Aspie. Problem is that this woman demands my child attend that ‘disabled’ class. And I refuse.

Why? Because the greatest hope for my child is mainstreaming. Not the crappy stuff that schools do, where they force our Aspie square pegs to fit into the round holes of society. But true integration whereby my child is able to access as many activities as she can comfortably manage with some modifications. Equally though where the ‘normal’ children are taught understanding and compassion. Where being different is not frowned upon or some secret to be hidden but rather something to be celebrated…not just PanKwake’s differences but the other children’s as well. In other words…a place where acceptance and tolerance are the norm. In this way, PanKwake’s limits are pushed and she is challenged to be her best. And at the core, the next generation are taught values for the 21st century.

This is not to say that we do not support special disability classes. We utilize the Thursday night swim sessions for the disabled almost weekly. In that case, the swimming pool is simple to crowded, loud and chaotic for her to enjoy in a general swim session. These twice weekly ‘special needs’ sessions have only a couple dozen people and PanKwake benefits from the more relaxed set of rules. But it in no way offers the same quality of socialization. She virtually ignores most of the other people in the pool for one simple reason…

12009603_1642281972654190_8146444174564625368_nFor those with Asperger’s or high-functioning autism they have far more in common with ‘normal’ people than others lower on the autistic spectrum. And with some understanding and a modicum of accommodations all can benefit from an inclusive environment. PanKwake by learning and practicing those hard to understand social cues that will allow her to become all that she can be…and those ‘normal’ kids by having core values such as compassion, understanding and acceptance modelled for them. Values that apply not just to the disabled but to…race, religion, sexual orientation and a hundred other things.

Next Monday I will take this a bit deeper and explain why I think that it is not PanKwake who is ‘disabled’ but our society.

Tough Summer…

The one thing that even high-functioning autistic (Asperger’s) kids need is routine. Unfortunately, summer sucks for that. Nothing is the same for them. Their normal routines are shot. Even for homeschooled ones like PanKwake. Which, of course, means one thing…more meltdowns.

This summer was no exception between….

  • the brother, who teaches in China, visiting for a whole month, which meant not even the refuge of her home was the same….
  • friends, who attend school suddenly wanting to spend more time with her…
  • so many activities…
  • even the hot, sunny weather that was a blessed break from the normally gloom London rain, cool and fog.

It was all just a bit overwhelming. But we survived…and considering where PanKwake was a couple of years ago, I think we did remarkably well. Some days really stand out like…

  • going to a fete in a local park with one of her best friends…and NOT being the one who sent us into panic when she wandered off.
  • just  the fact that she has managed to keep not one but TWO friends for months now…who would have imagined such a thing a year or two ago?
  • REAL Wonder Womanheck, we went to Comic Con…can you believe it? Hundreds of people, mostly adults, all kinds of ‘things’ she wanted, bright florescent lights, and constant noise that sounded like a beehive! And she found her zone…playing Minecraft on a computer for the first time. We bought one stuffed toy and had to get a pizza for her afterwards…walked a bit to find the only kind she will eat of course. Oh, and had a bit of buggy trouble when elevators broke down. I really earned my Wonder Woman stripes that day.
  • but by far the BEST was going to Legoland with her brother, the day before he went back to China. All day…and it was a typical rainy British one…and not a meltdown out of her (brother had a couple of minor ones…not easy having a sibling with special needs, even when you are an adult).

So all in all…well done to PanKwake. Mommy is so proud of the young woman you are becoming. I can’t wait until next summer…think we will be up to an RV tour of America with your friends?

The Leg Game…

Transitioning is always a challenge for those with Asperger’s. For PanKwake one of the hardest has always been saying ‘good-bye.’ For the longest time, she would simply run off without doing it…no matter how hard I tried to get her to. These days she has her own tradition. It is called the ‘leg game.’ If she likes you, then you are obligated to play it as you leave. She wraps herself around your leg. Her little arms about your knees and her legs about your ankle. Then it is a matter of pulling her off while you try to shake or pull your leg back. It is comical at times. Especially when she demands a ‘do-over’ because you or I did not follow her rules…no tickling, no shaking…and they are getting progressively higher standards…to the point that sometimes it is impossible. Usually it takes two or three goes to get out the door. But it is only way this child can transition without one of her meltdowns.

What creative solutions have you come up with to manage difficult transitions such as good-bye?

Great Expectations…

I saw this meme on my Facebook friends’ feed the other day and I knew there was a blog in there. It reminded me of something my older kids’ dad and I used to jokingly tell them when they got rowdy… “sit still and don’t learn anything.”

It says two...but the truth is that applies WELL past that age...especially to our Aspie/autistic kiddos.
It says two…but the truth is that applies WELL past that age…especially to our Aspie/autistic kiddos.

I want to say more, but I am not sure that I need to with this one. Other than two…ten…or sixteen…age is a number. We need to instead focus upon brain development and judge our children not against others of the same age but against where they were last month, last year or sometimes two or even five years ago. I believe that given time and that chance to learn through play they will get there. In their time and at their pace, PanKwake’s recent growth spurt in her development validate this assumption.

This message is especially appropriate now that summer is here. Kids are meant to be out and about. As much as mine loves her iPad, television and YouTube, I make sure that it is alternated with loads of running, jumping, swimming, ice skating, climbing and building. I went to a conference three or four years ago before we had the autism (Aspie) diagnosis. It was on epilepsy (her co-morbidity) and behaviors. One of the speakers, a doctor and researcher, gave the best advice I have ever heard…get them out and get them moving. He did not believe that any discipline method could truly work with these children. Instead he advocated proactive management of their behaviors by keeping them too worn out to act out. You know what…there is lots to be said for his methodology.

So this summer when your Aspie, autie, ADHD or just plain old ‘normal’ kid whines I’m bored, before things escalate to the point of no return…meltdowns or punishments…give’em something to do. Here are some of our free or cheap ideas…

  • Bubbles…keep them on hand or make them yourself with dish detergent and water.
  • Water balloon fights…form teams even…just be sure to pick up the broken balloons as they can be very bad for fish and marine life if they make it into the oceans.
  • Water guns…Super soakers, especially on a hot day.
  • Walks…in the woods, to the park, around the neighborhood.
  • Hide-n-seek…and this one teaches them counting too.
  • Tag…oh, boy do we know this one.

Get’em out, get’em movin’ and keep’em happy, tired and learnin’. Or that is my theory anyway.