Now to get off my soap box(es) and give some practical advice…
As the parent of a child with Pathological Demand Avoidance, there is one word in the English language or any other that is vital…
No matter what your child is doing…good or challenging (never bad…never, NEVER) this one word should be the first one through your mind. Your most valuable behavioral management tool.
Because the easiest, best for them and you, simplest and quickest way of handling any situation is…
To correct the root cause!
Or in some cases…when it is not possible to do so…just understanding WHY will give you the strength and courage to handle yourself.
This morning is a perfect example of that. PanKwake is on her up all night routine right now. And while she is making remarkable strides towards self-management, she only got me up three times last night and all of those physical needs. Until the last time, at 5:30 a.m. By then she had been up five or six hours and her greatest need was…companionship. She needed me!
Just understanding that made all the difference to me. I could empathize with my child…put myself in her place. Then she was not a nuisance…not needy…or demanding. Not unreasonable. She became just any other little girl who needed her Mommy…and if you aren’t prepared to meet those needs…well, being blunt…WHY did you have them to begin with?
But the truth is that over time, you develop a sixth sense. When this is your mindset, you become a detective…a scientist. You learn to look for clues and patterns. And eventually you even get to the point of being able to predict how your child will handle certain situations…some of the time anyway. At least more often than with traditional training, rewards or punishments methods.
Aren’t you just making excuses for bad behavior though?
No, not at all. It is not making excuses when you are genuinely, out of concern for your child seeking the truth about underlying causes of behaviors. Making excuses is easy…make something up, shrug your shoulders and say…what is the point, there is nothing I can do to change it.
This is much more complicated than that. This means you think…sometimes long and hard…about possible triggers. How is she sleeping? Is she eating? Have there been changes in routine? You go through the whole list. Being honest with yourself…including mistakes you may be making or made. You weigh each of them carefully. Not stopping just because you find an easy answer. You keep going…thinking of all the possibilities.
And often there is not a SINGLE one. Sometimes there are several factors that combined to incite the behaviors. Others times…there will be NONE…at least not any that you can come up with…or that they can give voice to. But you keep looking anyway.
When you do come up with valid ‘reasons’ then you take steps necessary to correct them…change the situation…so that its effects are minimized on your child. Granted…you cannot always do that…but you try your best.
For instance, as much as PanKwake loves going places and meeting people, she has trouble with motion sickness. She hates trains…the London Underground is the worst. She does not like taxis/cars…though she can and will tolerate them for short trips of ten to fifteen minutes. Anything longer and she will kick and scream, demanding to get out now. Busses are not much better except that if we allow sufficient time then we can get off and on, taking breaks for a while. About the only way she likes to travel is walking, i.e. her in the Maclaren Major buggy and me pushing.
Now there are some things that I can do to make travel a bit easier…strategies that work. First among those is knowing the extent of her limits…like I said 10 to 15 minutes. Then I give her progress reports. How much longer until we get there. If it is a taxi, then I am careful to explain to the driver her situation…in advance. Of course, keeping the window down helps. As does having a can of Febreze spray available…if there are odors in the car. Travelling with friends extends her time limits quite a bit. As does taking her iPad to distract her. But in the end, it all comes down to…just how badly she wants to go some place.
Thing is that I have learned we can often get some place quite easy…but getting home after all that excitement. That is a whole nother ball game. One trip to museums in London took us half an hour on the Tube on a quiet Sunday morning. But after a couple of hours going around them with her father…it took us three hours, four busses, two McDonalds, and walking for several miles to get back home.
Knowing that means that I take the time to plan things out carefully. I weigh up options…make careful plans…and backup plans (more than one)…and I still have to be flexible on the day. That is just the cost of giving her these opportunities at a ‘normal’ life.
Because I want my child to succeed…to be happy. Every time we go some place or do something my goal is to maximize her enjoyment and minimize the chances of a meltdown…for her…me…and even other people. I call this…
Setting her up to succeed.
But that sounds like a good place to pick up another day. Tomorrow I am off to the Celebrate Autism event at Swansea University…so the blog will be short or maybe just a few photos or links from the event. And likely Monday will be a review…but we will get back to this subject…I promise. Even if this takes more than this month.
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