Neurodivergence

#AutismSelfieWeekend…One Parent’s Thoughts

About to piss people off again! Ask me if I care? The truth is the truth. So here it comes…

I am the PROUD parent of a HAPPILY autistic daughter.

And we have nothing to hide.

Yes, I am neurotypical. No, I cannot fully understand how my child thinks and feels. But dammit, I try. I try hard.

I don’t ever force her to eat anything she does not want. In fact, I get up in the middle of the night to make her the foods SHE wants.

I do NOT force her into a set bedtime. I allow her natural body clock to do its thing. Even if that means it is inconvenient to me…or my beloved partner. Who had to buy a new house for that very reason. Yes, we tried the stupid drugs…and all those ‘standard’ routines. I stopped the drugs even though I had been told they were ‘natural’. And routines…well, she has her own. You know what…after I gave her control of her sleep circa eight, once it was safe to leave her in the room next door while I napped lightly, her seizures improved. When meds never did.

Speaking of which…I do NOT even force her to the doctors. Unless it is absolutely necessary. I do try to bribe her. But…

I accept No as NO. Whether it be doctors or anything else…if PanKwake tells me she does not want to do it then we don’t do it. Yes, that means banks, stores and even fun things. I offer her opportunities…but that is it. As a result we have not had a public meltdown in months.

In fact, we have only one or two a month. Heck, that is less than NT kids the same age have tantrums. And they are getting shorter and less violent too.

She even has control of her hygiene. Though I take loads of flack for it. I refuse to physically force my child into the shower…and there are no bribes that will work. Instead we work around it…weekly trips to the pool where she not only swims but will also shower…in her swimsuit. And in between she uses wipes…when something is important, i.e. a friend coming over or going somewhere. I understand that she is uncomfortable with the changes in her body…but forcing her will only prolong this phase. When she wants then she will go back to self-soothing with water…and we won’t be able to get her out of the shower.

All of this is possible of course because we home educate. I gave up a job that I loved. I have fought so many battles against ignorance on this one too. Why? To protect her from bullying. When the school refused to do so. I choose my child’s self-esteem, self-worth and mental health over everything else in my life.

And never once has she heard me say…how hard it is. She has heard me say other things like…I love your autistic brain. Wow, that is amazing…I would not have seen it that way. I love being YOUR mom. 

Yes, we talk about her autism…and epilepsy…and dyspraxia aka ‘fiddly fingers’…and dyslexia…and now ADHD though she has made the decision that she does not want more investigations to re-diagnose this one. Since it is not life-threatening, then I must respect HER decision.

And yes, I have spent a small fortune…even when all we had was benefits. I did without. Bills went unpaid. To give her not just the basics but her wants too. Because sometimes the line between need and want is not all that clear.

Back to the never complain about all I was missing…though yes, once or twice I have hidden in the kitchen or my bedroom after a particularly bad meltdown and cried. No, because of how tough I had it…BUT because I could not take her pain…as hard as I tried.

When I first read about Pathological Demand Avoidance (PDA), PanKwake’s form of autism, I made a vow…that I would give my child the best opportunity for a productive and HAPPY life…if it killed me.

And five years later, after choosing only two strategies to ‘manage’ her autism…ACCOMMODATION and ADVOCACY…because they respected her personhood…she is becoming ALL that ANY parent could want…

Thoughtful…Considerate…and most important HAPPY…

Her future is truly bright. HER dream is to become a YouTuber…so I am learning all I can to help her with that one. And doing my bit by allowing her to throw watermelon at me…on my birthday…and film it all…for her Prankwake series.

And if that does not work out…then there is extreme sports. Because of the dyspraxia she struggles at first but once her muscles get the hang of any sport she excels…and nothing is ever too high or too fast for this sensory seeker.

If that does not work…then perhaps animal rescuer. In fact, our next plan for her independence is to find and train our own service dog for her. None of the charities are accepting applications because there backlogs are so full. And when she does meltdown, PanKwake wants nothing more than to be left alone. Of course, we have not been able to do that completely because of safety issues. But in a couple of years…with a dog at her side to protect and calm her…it will be an option.

Then there is her art…her photography…her cooking…

My beautiful PanKwake may be multiply neurodivergent but she is also multiply talented.

Are we trying to force her to choose? No, we are offering her as many opportunities to explore her options as we can. We praise her successes…and her failures. In fact, we tell her that she can be all those things…and more. Because we don’t focus upon her challenges..like the reading…that’s why the Amazon gods made Audible. We focus on her STRENGTHS…

Her wonderfully complex and sometimes challenging AUTISTIC brain being the greatest of these. 

My child respects me and Cookie Monster…because we respect her. We treat her as equal…and then some, putting her needs before our own. We respect her personhood. All children deserve that. But very few children…neurotypical or neurodivergent…receive that.

The bottom line truth is…the issue is a parenting style. Unfortunately, the predominant one. One that debases and even dehumanizes ALL children. If you think that the neuroptypical siblings with those same parents fair any better? Well, ask them. Ask them how many times they have heard things like…I expect better from you…I am disappointed in you…Because I said so.

But not all parents are like that!

So before you go dissing all autism parents…the way that too many people dis the #ActuallyAutistic…find out about the individual. My Nanny taught me a saying…

What is good for the goose, is good for the gander.

In other words as we role model for PanKwake…to get respect, you need to give it.

So yes, I posted photos of my child for #AutismSelfieWeekend. I did so with her permission. After explaining to her ALL the debate and giving her time to make the decision for herself. I posted her selfies…without me or Cookie in them. Because it is all about her. We know that.

Which is why we respect her decisions to go public as HAPPILY autistic. 

Yes, we do all we can to protect her, including the most important thing of all…teaching her to protect herself. Because we will not always be around. And next to HAPPY…self-determination is the thing we want most for PanKwake.

And I can hear it now…how I am self-justifying. No, I am attempting to elucidate, educate and inform…

Not all autism parents are the same…

So please give us the same breaks you are asking others to give you…

Judge us as individuals…not ALL…

And even if you don’t…I won’t stop doing or saying what needs to be done for PanKwake and other neurodivergent children. Because…

#HappilyAutistic needs to be a #hashtag too.

And we are…all HAPPY. Young person…and adults.

As for the NTs taking advantage…well I leave that one to PanKwake…we discussed that too. She said…

Well if they are trying to help us then at least they don’t hate us. Don’t want to make us like everyone else.

 

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