I talked yesterday about the divides that exist between parents with children on the big, wide, beautiful spectrum of AWE-tism. This month…April is Autism AWARENESS Month is one of those divides.
And in my typical loud-mouth style, I have taken a stance. A hard-line one (surprise, surprise…lol).
I don’t want or need your (insert expletive of your choice…or not) AWARENESS.
Plenty of people…’experts’ include…are aware of autism. They may even know ALL about it…from a scientific/theoretical perspective. But that does not mean they UNDERSTAND anything about my child…my experience of AWE-tism…or bub-kiss.
And to say I ‘want’ acceptance for my child and all the others on the spectrum is way too mild…
I was reminded last night of how important this fight is…not just for PanKwake but for the millions of other A-Men (new one here…not X-men but A-Men) around the world…and their families. It was a brutal reminder of my own struggles…
We are not safe even in our own homes!
We cannot keep our children safe there either…not even in their personal space are they free to unfurl those beautiful wings (Angel) or walk around blue and naked (Raven/Mystique).
For me that has been one of the biggest struggles we have faced. Because at my core one of my strongest ethos is that the HOME should be your refuge and fortress in times of trouble. The one place that you are free to just be who you are.
As much as I hate it…to some degree I accept that living in society means we must wear masks at times…pretend to be things we are not…do what others expect of us.
Oh, I hate those words…but I do understand the necessity for them…SOMETIMES! One of the biggest lessons I work on with PanKwake is just that…how to know what rules should be followed…and which are just stupid, out-dated, and illogical.
The truth is…doing what is expected of us by others rather than what we want…is hard on all of us. Just more so on those with Pathological Demand Avoidance.
So we all need a safe place to be true to ourselves. In my paradigm, that should be our homes.
But for many families living their lives on the AWE-tistic spectrum they cannot be themselves even in their homes. I know because we have lived it…
- When she was a baby and toddler, PanKwake had one of the most ear-piercing cries I have ever heard. Imagine what someone would sound like if you poured boiling water on them…yeah, that’s it. (Little did I know that her sensory issues meant that was exactly how she felt most of the time.) She could be heard half way across our complex. I lived in constant fear that one of the neighbors would report us for child abuse. Thankfully they all knew us and that never happened.
- But worse did…sometimes it is those closest to us that invade our space and betray us. Extended family are the worst for judging and interfering. Making our lives and our children’s unbearable. This happened to us so badly that we were no longer safe where we live and tore our family apart in the process.
- The temporary housing we were given was a 1st floor flat. So I was on guard every moment that PanKwake was home from school…lest she disturb the downstair’s neighbor, who made it abundantly clear that she would not tolerate noise.
- I was so relieved when we found a ground floor flat…tucked in a corner of the building. But even there we were not safe. We were reported to social services this time for her crying at all hours of the night. And worse…we endured prolonged bouts of construction that drove PanKwake mad…me too.
- Then along came Cookie Monster…our knight in shining armour. And he swept us up and away from all that…just in the nick of time too as more construction was coming…bigger than before. Now we were safe…he owned a lovely home.
- Except even there we were not. This time tore my heart out because things were still so new I feared it would destroy our fragile happiness. I remember thinking…Goddess, how could you? Allow me to taste happiness just to rip it all away. I underestimated her…and Cookie.
I will not boast that we are safe…for I know that is to tempt Fate. But the walls here are over a foot thick…of solid rock. The stairwells are in the center of the house so PanKwake can pound and run on them all she wants. We have a huge backyard for her. It is as AWE-tistic friendly as Cookie could find. And that was his goal…to give PanKwake a place she could be safe…and me a place that I could rest and relax. A place where we could begin to form a family.
But that does NOT mean I don’t remember or empathize with my sisters and brothers who like I was just do not have the wherewithal to purchase places like #HomeCrazzyHome.
I feel their pain. I understand the stress of trying to be ‘perfect’…to force your child to be something she is not…in your own home…for someone else’s sake.
I will make a shameful admission…I have felt the stress so deeply that I have medicated my daughter’s sleep. I even did the one thing I hate most…I have restrained my child. I have held her down…with her screaming, yelling and pleading. It is something that I usually reserve for the direst of situations…when she presents a harm to herself or others…not even property. But that was how bad it got. That, folks, is how dire the situation can become for families.
Yes, I hear you…but what about those other people? Don’t they have the right to be safe in their refuge too?
Yes, yes, they do. TO A POINT! The problem is…we live in a society that is NOT child friendly. And that is a change I have witnessed in my lifetime. We place unrealistic expectations on ALL children to sit still, be quiet, don’t bother us. And when they don’t…we medicate them…we label them…we discipline them. For just being ‘normal’ children.
How much worse for our A-Men?
No, the people that have betrayed PanKwake and I have been…parents, grandparents, former nannies, and even a nurse. People who had plenty of AWARENESS about special needs. They just did not care! Their comfort meant more to them than the needs of a child. Because of course…they were bigger, older. They paid taxes. Their expectations…their DEMANDS…were UNREALISTIC of any child. Let alone an AWE-tistic one!
Enough is enough, folks! Shelter and safety are foundational needs in Maslow’s Hierarchy. Everyone in a ‘civilized’ society should have access to them! Not just those lucky ones of us who can afford it.
So my personal call for this AWE-tism Acceptance Month is specific…
AWE-tism FRIENDLY HOUSING!!!
Places where we know that we are free to be ourselves…and allow our children to do so too…
Places where we know that our children’s needs are considered…noise, lighting, space, smells, textures…
Places where we know that we will not be reported to the police or social services…unfairly…discriminatorily…
Maybe in an ideal world even where we are given smiles, hugs, and cuppas instead of anger, hatred, and abuse…
Once upon a time maybe AWARENESS would have been a good first-step in that direction…but we are long past those days, folks. Almost anyone you ask on the street knows what autism is…
That does NOT stop the discrimination against us!
And while I know that society will not change overnight…we have to start somewhere…and having a refuge and fortress…a real HOME…is a darned good place if you ask me.