I am an idealist. I want many things…especially ACCEPTANCE for ALL people. But my passion at this point in life is obviously #NEURODIVERSITY.
I want and have battled so hard to ensure that PanKwake has the best possible chance at a HAPPY life. As she approached her teens, we are just beginning to catch glimpse of the truly breath-taking individual that she will become. I am so proud of her.
And I would not change a single thing about her…not the #autism or the #PDA (Pathological Demand Avoidance).
My heart breaks sometimes when I hear well-meaning parents who talk about their burdens or challenges, how hard it is to raise their #autistic child.
I find myself angry every time I see another stand at an #autism show about a therapy that will stop stimming, condition or manage behaviors.
Worst still are the social media blogs that friend or follow me because my daughter is #neurodivergent when all they want is to sell me a new therapy that will help my child be more ‘normal’, spread myths about autism that were disproved 20 years ago or more, and promise their diet or supplements will ‘cure’ your child.
Does that look like she needs a cure?
For advice on parenting my neurodivergent daughter, I am turning to the TRUE experts…the only people who understand how she might feel and think…
My Twitter list is full of them. I read as many of their blogs as I can…i.e. almost all if I see one in my feed. They have changed so much about this new stage of parenting my daughter. I have learned…
- The word…Neurodivergent…and multiply neurodivergent which is PanKwake.
- That terms like high-functioning and non-verbal are counter-productive.
- Not to make ANY assumptions and especially be careful what you say. Because someone is autistic does not make them deaf…and that means…talk to THEM not the people around them.
- Social Model of Disability that for the first time truly makes sense to me why PanKwake can be both perfect just as she is and still need DLA…that one has bothered me for years.
- Spoon Theory…that helps me to understand why my daughter calls for me in the middle of the night to get her water or turn on the light (before we got the voice controlled ones) when she could physically do those for herself.
- That my daughter’s ‘peers’ may not be the people I think they are. That I need to seek out neurodivergent adult mentors for her…especially now as she begins to truly form her self-image.
…and all of that in a month!!!!
But over the past couple of days I have discovered a small issue to add to that earlier list of things that bother/concern me.
A couple of days ago, I had what I thought…and still do think…is a great idea. If some of the autism parent blogs would band together and one day each week have a guest post by a neurodivergent adult offering their best advice on raising a HAPPILY autistic person. I began by sharing the idea with the one other blogger who I feel is most on the same page. But her response disheartened me…while she too liked the idea, she voiced reluctance because recently she had been attacked for using the term ‘autism parent’.
Then this morning I wake to another instance in my Twitter feed of a neurodivergent person making a comment about parents over one of my pet peeves actually…a cure. Now thankfully that person went on to make the distinction that they were not talking about ALL parents.
And again my heart cries out…
PLEASE…I am NOT your enemy!
We want the same thing…a better world for ALL neurodivergent individuals. An environment and society where an impairment does not automatically equal a disability. A system of support for them and their carers which truly enable and empower the person and not just whatever some bureaucrat can afford to give.
And to achieve those lofty goals it is going to take us all…working together. There is power in numbers.
And yes, there are some parents…even loving and well-meaning ones…who may think they want a cure. But you know what? They above all others need to hear YOUR voice. They need to hear that you can be HAPPILY autistic! But trust me…they won’t listen if you call them names and scream at them. I know because in frustration I have done just that. They need to see you lead by example.
Yes, I am sad to say too that some will never listen. That they have been programmed and conditioned themselves in such a way that ‘normal’ is all they want for their child. That saddens me too…not just for their wonderfully neurodivergent child but for them too.
But I believe they are the minority. Most parents of neurodivergent children only want one thing…the best they can give their child. But like you for too long we have heard only from neurotypical doctors, scientists and educators who THINK they know what is best, but in fact have no understanding of what it is like from the inside. We listened…because it was all we had.
That isn’t true anymore…You are there now. Standing proud. Shouting that different is not less. That it is more than possible to be HAPPILY neurodivergent.
So please…I beg of you…give us a seat at the table. See us as your partners. Share with us your knowledge. I guess what I am asking of neurodivergent adults is the same thing that we all want…
For what we are…human beings just doing our best for our children. Failing sometimes but always getting back up to try again…something new…always seeking…
Just like you but different…isn’t that what diversity is all about?
And yes, there is more to come…because one of my neurodivergent friends just gave the accompanying letter for autism parents.