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…

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The Hardest of Thing of All…

Sometimes I don’t know why I do it. Yes, I do. Because I want to give PanKwake as close to a ‘normal’ childhood as I can.

PanKwake actually loved this...
PanKwake actually loved this…

So yesterday found us back in Finsbury Park at ANOTHER fun fair. Having learned my lesson from last time, I gave us plenty of time with her carer…four hours. Plenty of money too. I also made sure to give her plenty of time warnings at half an hour, 15 minutes, 5 minutes.

And I thought…it worked, this is perfect, she is having a great time. Right up until the moment that we got outside the gate and her carer went to get on her bus.

Then she kicked off. Laying on the ground. Kicking. Screaming. Cursing. Trying to run away…with one of the busiest streets in London less than 15 feet away.

And all I could do was hold her feet to keep her from kicking me too hard or especially running into the street.

I do want to say…THANK YOU…to the half a dozen true heroes who stopped and genuinely asked…Is there anything I can do to help? You rock. To the other mothers of autistic children, who offered your empathy…thank you especially for sharing our encouragement.

But the hardest thing of all was not all those others who stared…somehow I have learned not to even see them. It was when she said…”You’re not my mother anymore. I want a new mother.” Don’t get me wrong…I know that she did not really mean that. That she cannot control herself when she gets like this. I know that…

But having lost a baby, a marriage, more than one job, and any hope of ever finding the one I wish with all my heart (there was a man who could just accept us for who we are and be there to hold me when all of it was over)…having given up all of that, getting up every morning to write so that one day hopefully I can give her the life she needs, having put strains on my relationships with my other children, waking up several times in the middle of the night to check on her…those words hurt. No, a knife to my heart would be a quicker, kinder fate than remembering that moment.

Of course, for her the most wonderful thing about autism is that once the meltdown is over…it is over. It took half an hour on that street…and another two of rambling streets looking for a ‘new family’ but when we got home she got a bath, ate and watched YouTube videos.

I, on the other hand, lay all alone in the bed just across the hall…and played those words over and over in my head until it throbbed. Not even an episode of Game of Thrones and tablets eased the pain…or erased the memory. Like I said…I know…I realize she does not mean it. Cannot control it. But neither can I just forget it.

As I told a friend…it is the law of emotional gravity…what goes up, must come down. And right now, she does not have the developmental capacity to regulate her emotions. I have studied child development enough to know that this is a brain maturity issue. And it is just a matter of time and patience. But what do I do until then? Do we stay home where her environment is more controllable and those types of meltdowns are less frequent and more manageable? But then how will she ever learn to modulate those emotional highs and lows if I do not give her those types of opportunities?

It is another day. I awoke tired…and emotionally drained. But the sun is shining…and it is another day…another opportunity. Today we are going with our carer to her favorite pool. I have it all planned, but then again I had yesterday planned too. So I recognize the futility of that. I am prepared for another one…as much as I can be anyway.

Of course, after today we have three days with nothing scheduled. Time for us both to rest and recover…from this thing we call life with autism/Asperger’s.

Next Sunday is American Mother’s Day…

But this one was one of the toughest days of my life as a Mom…

I messed up. I know that PanKwake needs long transitions and routines especially when she is saying good-bye. Usually her carers and I plan this and give her plenty of warning. She cannot tell time exactly, but relates to it in terms of her favorite television shows. So fifteen minutes becomes a Phineas and Ferb. We give her at least one of those and usually a second warning at eight to ten minutes…or a Minnie Bowtique. But this time, I was running late getting back, because I had needed to re-make her milkshake three times before I could my errands. And our brilliant carer absolutely had to leave on time as her parents were calling her from Germany. We were stuck…and I knew it was coming.

But that never makes it any easier. Of course, as I said the other day, lately she has taken to doing runners. ‘Eloping’ is the offensive and cutesy word that some idiot coined for it. I hate that word…it minimizes one of the scariest parts of raising an autistic child. The fear that they will hurt themselves or be hurt by someone else is paralyzing. You feel like the worst parent in the world…and that is how people look at you too. It is not cute…it is not funny. It is terrifying.

In desperation, I did something that some people may condemn me for…but I don’t care. Because they have not faced what I do. They do not know that fear. And unlike many others who do know what this feels like, I will no longer be held captive to what others think. I have decided to come clean…to open a dialogue, to air my dirty laundry. This is what I did…

PanKwake Sign

I helped her pack a bag with Billy (her special doll), some sensory toys and I made her a sign that read…’9 year old autistic girl seeks new family.’ Condemn me all you want, but by giving her a sense of control I enabled her to calm herself.

I messed up again though when I asked her dad, whom I had called to help, to take her out in the buggy. He cannot read her as well so he did not how to help her lower her excitement as effectively. But honestly, I needed to just stay home and cry. Because as logically and dispassionately as I make all of this sound, the truth is that it broke my heart. I have given up everything for this child. A marriage. A home. A job. To some degree my other children.

Then to hear that child tell you that ‘you are not my Mom anymore, I want a new family’ pardon my French but it rips your heart out your… But it is not just the bad days, even on the good ones because of the autism, she is unable to show me affection such as hugs, kisses or even the words ‘I love you, Mommy.’

Still I have sworn that if it kills me (and some days I think the stress of it every well may), I will gladly lay down my own life to give her the best chance at hers. That is just being a parent…let alone the parent of a special little girl.

But that does not make days like this any easier, nothing does. But tomorrow is another one…be it good or bad…it is another challenge to be overcome in dealing with this thing we understand so very little about…called autism.

Not So Fun Fair…

I want to share one of my FaceBook posts from a couple of weeks back. It is about a typical day out for us…but still we keep trying. I just wish society would try half as hard as PanKwake does.

****

MomKwake is exhausted and on the verge of tears. It was another big day at the fun fair in Finsbury Park. PanKwake’s carer took her this time. I stayed just outside because I could not handle watching her on the scary rides.

PanKwake actually loved this...while DadKwake gripped the handles and went...No, no, No.
PanKwake actually loved this…while DadKwake gripped the handles and went…No, no, No.

Then it happened…the call I dreaded: PanKwake was having a meltdown inside. I politely explained to the man at the gate as I cut through the special buggy gate in front of the long line. I held out a tenner to pay my entrance fee but he just shook his head and waved me on.

I find PanKwake kicking and crying. She wants a blue stuffed poodle in the claw machine. I go to the back and explain to the man about her being autistic. He says that the stall at the end of the row has more. I try to talk to her but no go. The man opens the machine and pulls out the stuffed toy.

But even then…it is not enough. That is one HUGE difference between a temper tantrum and an autistic child’s meltdown…even giving them what they want is not enough. The problem is that something physically or emotionally hurts them inside and they lack the communication skills to tell you exactly what it is. Let alone figure out how to make it stop themselves.

So then it was time for her wonderful carer to leave…but without the normal leg hug routine PanKwake could not manage goodbye. She demanded her favorite game of tag. Brilliant and caring person that she is, our carer stayed and even helped push the buggy up the hill to the play area. And tag it was.

But then it was…I want to ride the boats. With a line around the corner and them closing shortly. Then it was…I want a jacket potato.

The thing was that I could see her calming down…almost watch the reasoning return to her bright brain. She was getting herself back into control. And she sought her comfort area once more in the buggy.

Off we go in search of jacket potatoes with butter, cheese and sour cream. The cafe in the park did not have them. So as we walked back out the park I offered her chips (crisps) that we had in her bag from earlier and she thanked me as she accepted them until we could find the potato. She even commented as we passed back by the fun fair, “I am turning my head so I don’t see it and want more.”

We trotted on over to a store near the Tube station because of course almost no cafe has sour cream for their potatoes. We got that and walked back towards the station and with a smile she says goodbye to her carer.

We had to visit two or maybe three more cafes until we found her jacket potato and even then the man had not melted the cheese enough on the top. I worried that she would have another meltdown but instead she said, “I’m so hungry I’ll deal wif it.”

We walked home then…another 20 or more minutes. We stopped at another store for more potatoes so I can make her the good ones and more ice cream.

As we passed the card shop, she commented about another stuffed Moshi in the window. When could I get that for her? I said when I got more money and held my breath for another meltdown that did not come.

We passed the pound shop and she so politely asked if she could have one thing from there. She even picked an inflatable pillow out of the window. And we paid for it. We were almost home then…potato finished and PanKwake smiling.

We made it home…five hours after we left…over an hour and more than a mile walk after we left the park.

PanKwake wanted to play Minecraft on her iPad. I printed out things for her to ‘craft.’ Then she had trouble…and another meltdown. A small one and we are home. No one to watch us. No one to judge us. So I dealt wif it.

This time the issue was that PanKwake was exhausted. She pulled the covers over her head and told me to deal wif it. She was going to take a nap.

Now that was before 7 so I know that she will wake up later, probably just about the time I am laying down to go to sleep. But that is all just part of our life with autism.

So many people would or maybe even will read this and condemn me…for spoiling her, giving into her. I don’t care. Let them. I read a book on autism once that compared an autistic child’s meltdown to a panic attack. I know how that feels.

A few years ago I suffered from depression following a miscarriage. I would have panic attacks any time I got more than three blocks from where I lived back then.

One day I had an appointment. I worked up all my nerve to go to it. I got lost on the way but was determined I could do this. I arrived and checked in with the security guard, who told me to take a seat and wait. I waited and waited and waited. I was afraid to even approach the guard again. I felt panic building inside me like bubbles when you shake a coke bottle. I eventually did get up the courage to speak to the guard again and he nicely called the person with whom I had an appointment, but she did not answer.

I left there in tears. I was sweating and shaking. My mouth was dry and my heart was beating so fast I feared it would explode out of my chest. I walked all the way home then too. Huge tears streaming down my face and people staring at me.

I was forty-five years old. I had two college degrees. I had managed a six million dollar charity campaign. I had handled drunk celebrities at an AIDS fundraiser. I had organized a dinner party in the posh country house of a Duke and Duchess. And I could not stop crying walking down that street with thousands of people looking at me like I was crazy.

So why would I expect my 9 year old daughter to be able to deal wif the pain inside of her?

This society on the other hand should learn to ‘deal wif’ those who are different…be it autism or mental health issues. Cardinal Roger Mahony got it right when he said:

“Any society, any nation, is judged on the basis of how it treats its weakest members — the last, the least, the littlest.”