Can’t, not won’t

PDA (Pathological Demand Avoidance) mom rant incoming…

When my son and I wake up each morning, we spend some time in bed, cuddling and talking, before we get up to start the day. This morning, I mentioned that today was going to be cooler. My son’s immediate response, “no, it isn’t”. I started to explain a bit but was again hit with immediate denial and a bit of emotion.

“Ok, baby. I thought it was but I guess I was wrong.”

Period. End of conversation.

We go upstairs and my mom mentions the weather.

“It isn’t cold” Anger. Panic.

Grandma proceeds to push.

“Alright Mom, drop it.”

She knows he is PDA. She understands what this means. She continues to push. She needs to be right. It is in fact cool outside.

I snap and yell at her.

Why are we arguing with a four year old, period. A four year old with a nervous system disability….

PDA isn’t easy for caregivers but… It’s much harder for the child experiencing it. Every choice we make as caregivers either activates his nervous system or accommodates it, helps him to regulate. He doesn’t get a choice. He is just constantly in fight or flight.

There are decisions that are difficult to make. When and how often to push for him to take a bath, change his clothes, try a new food… But this… This was not one of them.

It is cool outside. I know this. My mom knows this. Accommodating a four year old with a nervous system disability by stating they opposite? Not a big deal.

I really hate living with other people.

Judgment Day

I feel…. Fuck, I don’t know what I feel but it isn’t good.

I spent the day at my sister’s. A cousin of mine was going to be there with her children. The youngest two are near my son’s age. The older being six months older than my son and the younger a year and a half younger. The kids went downstairs to play, my son included, while the adults stayed upstairs. From the sound of things the other kids behavior wasn’t the kindest. They were hitting my son with balls, he did not like it.

My child prefers the company of adults and older children. This, I’m sure is at least in part due to it being what he’s used to. He was born right before the world shut down. He didn’t have any exposure to anyone outside of my family (me, his dad, my parents, sister and nieces) for about the first year and a half of his life. After that, his exposure has been limited. Illness doesn’t lend itself well to a lot of socialization.

His encounters with children his age have been few and he’s mostly either ignored the other children in favor of the adults in the situation or stayed mute while following the other child and letting them give him instruction.

I know that this is in part because I haven’t provided him with many opportunities to engage with children his age. I also know that it’s in part autism.

I wasn’t ever truly bullied at school growing up. I mostly stayed out of way, hidden. There were a couple of incidences with girls who were in my friend group (aka the other friends of my only actual friend) where they weren’t very nice but mostly behind my back. They just didn’t like me. I was weird. This was echoed in the time spent with my mom’s side of the family. I was quiet. I was awkward. I was the weird cousin and I wasn’t treated too kindly.

I’ve read enough experiences of other autistic people to know that this is how childhood goes for many of us. We’re treated unkindly at best, severely bullied at worst. It doesn’t matter what we do, mask, hide or actually be ourselves, other children see us as different… Not the same…weird.

This is the part where I don’t know how I feel, or I’m feeling a confusing mixed up jumble of things. If I had provided my son with more opportunities to socialize with children his age, would he be less awkward with them now? Would I even want him to be? I don’t want him to be anything other than his weird and wonderful self but… I also don’t want him to suffer unduly.

I don’t know. Discovering that I am autistic has helped me to realize many, many things about myself and my life. One of the most important being that a lot of the things that I like most about myself are because I’m autistic. I’ve spent so much time mutilating my sense of self, attempting to cut those parts of myself off in order to make myself more palatable to others. There’s nothing wrong with the way I was to begin with and I wish I had known that. There’s nothing wrong with my son. I wonder if the problem lies more in the way other children are socialized than the way my son has been…My son was anxious but he made his best attempt to join in and he got the weird kid treatment. Maybe we all need to look at the judgements we’re making and try our best not pass them down to our kids and talk to them about the unfair judgements being made around them in our society.

Undiagnosis

If you look up the typical signs of autism in a toddler, my son doesn’t really fit the bill. He’s has had no language delays. No intellectual dysfunction. He makes eye contact with no problem, uses his imagination to tell me creative stories and is at least somewhat social. He’s always responded to his name, smiled when you smile at him… Fuck, he doesn’t even toe walk…

What he does do is line up his toys, stack them up, organize, reorganize..He is sensory seeking, rolling and bouncing and rocking and hitting himself into and onto my body, the couch, the walls. He’s eaten the same thing for dinner for the past year and half or so. He went though a period where we had to be very careful in what textures he ate, how fast he ate, if he chewed well enough… Or he would gag and vomit. He runs and hand flaps whilst pooping. He hand flaps and makes other happy gestures when he’s excited. He “puts water in nose, eyes, ears”… Finger to mouth, finger to nose. Finger to mouth, finger to eye. Finger to mouth, finger to ear. Over and over.

The most telling sign of all, I’m my opinion, is his extreme demand avoidance. His equalizing behavior when stressed out. How contrary he can be…

Despite all of these things, most people (even autism “experts”) see him as neurotypical…. Listen to how well he speaks, oh and he’s so sweet and creative and social and and and…

I am fairly certain that I am undiagnosed autistic. I went under the radar my whole life and the consequences have been dire. I’m not willing to let that happen to me child.

Finding appropriate and affordable help should not be so damn difficult.