From the moment PanKwake was born, I knew something was not right. After five other children, one of whom was special needs, I just knew.
She would screaming, not cry, the highest, shrillest sound, like you had placed her under scalding hot water. Nothing helped. Not the breast, not changing her diaper. The only time she was quiet was when her dad turned the television on to the R&B channel and rocked her…always facing out. Then we found a swing at a yard sale…and there was a bit of peace. Not much, but better than before.
By the time she was two, I was using the A-word. She was stilling having those cries…I worried that the neighbors would call the police since you could literally hear her at the other end of our building. And I could not take her anywhere. She hated her stroller and fought to get out of it. I could not even take her down the street to the grocery store. She still was not talking…but they dismissed my concerns because she was the youngest so she did not need to…we all responded to her grunts they claimed.
Then she went to nursery. She did not really interact with the other children, playing her own games alongside of theirs rather than with them (parallel play). And if someone messed with what she was doing…especially her Legos or art…all hell broke lose. Get her to eat the same thing as the other children? Forget it…she threw her food across the table. And no shoes or socks.
Off to school and things only got worse. Now she was bullied. A four and a half year old BULLIED on the playground to the point that my happy little girl cries every single day when I pick her up and asks me, ‘Mommy, am I dumb/stupid/ugly?’ That was over five years ago and she still talks about it sometimes. We took her out of school and home educate her.
Then it was almost a two year road to get her diagnosed. First, it was ADHD. Then it was SPD (Sensory Processing Disorder). We had a cognitive assessment along the way, but the results were inconclusive…she fought every single test. The autistic spectrum assessment was a nightmare for her. She crawled under the table into the fetal position when they asked her to ‘pretend’ that Batman was the veterinarian. In the end, they told me what I had known all along…high-functioning autism, once known as Asperger’s syndrome.
It changed nothing for me…but it did give me POWER…a word for others.
Except that as much as we want to believe we have come so far from Hitler’s concentration camps that took the disabled even before the Jews…and Rain Man, where the parents were advised to ‘lock’ him away…the cold hard fact is we have not.
Society is INTOLERANT!!!
Yes, I said it. People are cruel, thoughtless and hateful.
One supposed marker of autism is rigidity of thought…the inability to be flexible. Well, let me tell you, PanKwake makes FAR more accommodations for others than they do for her. Far, FAR more!
- The stares….because one accommodation I have made for her is a Maclaren Major buggy.
- The thoughtless comments…’What’s a big girl like you doing in a buggy?’
- The cruelty and hatefulness…People on the buses and Tubes especially…like we have no right to inconvenience them with our presence…with the buggy…with her iPad that she needs to distract her…with us talking as a means of calming her.
The cold hard fact is that most people still are ignorant and uncomfortable with anyone that is different.
And you know what I say to that? In true REAL Tara Neale fashion…
TOO FUCKIN’ BAD!
1 in 50 are on the spectrum like PanKwake. That’s an under-estimate…knowing what I know and spending the amount of time I do on playgrounds…try 1 in 4.
So more honesty…SCREW Awareness…
It is time for society to start ACCEPTING and ACCOMMODATING not just those with autism…but ALL differences…
- Other challenges….PTSD, depression, chronic fatigue, the list is endless
- Genders…including trans
- Sexual orientations
- Tattoos, piercings, purple hair
- Sizes…bean poles to over-sized as well call it (health should be the issue…so yes, we still need to address morbidly obese)
- You name it…
Because Different truly is BEAUTIFUL!