NaNoWriNo 9 – Parenting

As with Understanding, there is more to Acceptance than merely process or fact of being received as ADEQUATEVALIDSUITABLESATISFACTORY, and RIGHT.

Tolerate a difficult or unpleasant situation or as Wiki said better…a person’s assent to the reality of a situation, recognizing a process or condition without attempting to change it or protest it….

Is equally important.

But wait a minute…I thought you said there was nothing WRONG with my autistic child? What’s the deal with difficult or unpleasant situation?

There is not. But as the mother of six…two of whom are special needs, one of those autistic/PDA, and four who are ‘normal’ or neurotypical, let me tell you…children can be difficult. ALL little humans.

But even more so those big humans…family, friends, professionals, ‘experts’, and even strangers on the street. Society is the biggest unpleasant situation you will ever face. More so than even the worst meltdown that your PDA/autistic little human will ever have.

But even then…let me tell you a secret…Life can be difficult and unpleasant situation.

But it is the second part of that definition…the bolded bits that I find more useful…

a person’s assent to the reality of a situation, recognizing a process or condition without attempting to change it or protest it….

That is the very core of what ACCEPTANCE means…and pretty much the exact opposite of what #AutismParents do.

So let’s focus on this one…and see how it fits in the context of those difficult or unpleasant situations…

a person’s assent to the reality of a situation…

Now here is where the rubber meets the road, folks…

Assent means…the expression of approval or agreement.

That is not as easy as it sounds when you consider the realities of the situation…i.e. autism.

At almost twelve…with greater emotional regulation of maturity and several years of these practices…PanKwake truly is miraculous. She is confident, #HappilyAutistic, and #ProudlyPDA. She is a leader among her home ed peers. She is in fact a social butterfly. She has long-term plans and goals…to become a YouTuber. Not much different from other tweens in some ways.

Nonetheless, the realities of PDA/autism mean…

A restricted diet – PanKwake has only three, perhaps four, dozen foods that she will eat. Even then, she tends to binge on certain ones for extended periods before moving on to others. As a small child, I remember a time when ALL she ate for about three months was Philadelphia cream cheese. Yes, I said all. These days she will usually have a handful of things that she is ‘on’ at the moment. Jacket/baked potatoes, Domino’s pepperoni pizza…toppings only, never the crust, Twix candy bars. Not exactly well-balanced and nutritious? Still, her weight is ideal and the only vitamin deficiency she had was D…common in darker skinned children living this far north.

Erratic sleep cycles – PanKwake does not keep to a regular bed-time. She is not even one of those ‘late’ night types. You see while most people operate on a 24-hour circadian sleep cycle that easily corresponds with night and day on Earth, PanKwake’s is more like 26 or 27 hour cycle. So over the course of a month her sleep schedule will slowly move around the clock. Sometimes…like last night…she will be beautifully ‘normal’, going to bed before 9 p.m. and waking up just before 8 a.m. Two weeks ago though, she was falling asleep as the sun came up at 6 or 7 a.m. and waking up around 4 or 5 p.m. She does sleep soundly…in fact, NOTHING will wake this girl once she is asleep. We should know as we have had heavy drilling, hammering, and construction at #HomeCrazzyHome for the past year. She also gets a ‘normal’ amount of sleep, ranging from the occasional short ‘night’ of five hours up to 12 or even 13 hours. And the only thing that works to ‘control’ it is having an exciting and fun schedule of activities that make her want to get up. Even then it is not perfect control.

Sensory Overload – PanKwake has super hearing and smell. She is a sensory seeker…always wanting to be running, jumping, and it constant motion. She does not hug or like to be touched. She HATES the feel of water on her skin. And absolutely, positively do not even think about touching her head, let alone combing it. She can sometimes be sensitive to lights, but this is more erratic. As for taste…did you not see that overly long previous paragraph? Nothing changes any of this. It is just how she is. And at times, it can affect her functioning severely…even ‘disabling’ her and I do not use that word lightly. This summer was horrid. After a couple of failed attempts at the local leisure center, beach, and park, PanKwake refused to leave #HomeCrazzyHome until the children went back to school. As a result, we have to schedule all our activities with her sensory issues in mind.

Mood lability/meltdowns – This one is especially challenging in Pathological Demand Avoidance. PanKwake can seemingly go from euphoria to violent outbursts in the space of less than a minute. And back again…though certainly NOT as quickly. Over the years, I have gotten better at seeing patterns that others miss so those behaviors came as less of a surprise. We even learned self-soothing techniques that could delay or minimize the meltdowns…especially when out in public. With her new maturity and years of these strategies, PanKwake is down to a meltdown once every two weeks to month. And the worst of them…the violent ones only two or three times a year. BUT meltdowns and mood swings will ALWAYS be a part of her life and ours. I am actually more concerned with the emergence of ‘shutdowns’ as a coping strategy for PanKwake. While society would I am sure endorse this as a positive thing, I do not. I worry about all that energy being turned inwards, internalizing that much pain.

The list goes on…

  • Executive Functioning – the ability to plan/organize and execute complex thought processes…
  • Communication/verbal processing – There is still a longer delay between PanKwake taking in information…processing it…and responding…
  • Social skills – While PanKwake may have some of the best I have ever seen…on or off the spectrum…it is not without a price. She tires easily and requires recovery time between activities.
  • Transitions – She still has trouble switching from one activity to another or one place/person to another.
  • Repetitive behaviors – Though PanKwake has rarely been a traditional ‘flapper’, she does rock under duress. Even more so though is her fixations upon her ‘collections’. Shopkins, dolls, games (video and board), and loads of others. We have even been through ‘hoarding’ therapy.

And that does not even take into consideration her co-morbidities of dyslexia, epilepsy, or dyspraxia.

Those are simply OUR realities of being Autistic…of PDA…for one little human…and our family. Yours will be different. Just as your little human is.

So trust me when I say…approval and agreement to ALL those…can be challenging. Perhaps you could even use the words…difficult and at times unpleasant. But not in the context of your little human…or even autism/PDA…simply in the realities of the situation. Which is why…

recognizing a process or condition…

Is so Important.





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