The Bitter and the Sweet

It’s not the same for everybody. It’s like IBS. My IBS won’t be the same as your IBS. What triggers my flare up won’t necessarily trigger yours. That’s how autism is. My children are great examples of that. Three very different manifestations yet I knew even before professional diagnosis that each was autistic.

The bitter. Hair. She cries if she even sees detangler merely pointed in her direction. A hand wanting to stroke her hair sees her flinch. And shampooing and trying to detangle means screams and cries.

So I leave it.

I’ve seen White mom’s posts with pictures of their children’s knotted up hair. Afro hair is the queen of matting and pain. So now what? It’s matted up, I’m not allowed to even touch it. I did begin locs on it but she wouldn’t let me tighten them.

When she started constantly scratching her head, I got nervous. What if her matted hair is uncomfortable? Plus, to the outsider, it’s as if we don’t care about her hair. So out came the shears this week.

And out came the most bitter screams and tears and mucus and sweats and shakes. It was horrific. Her dad kept telling her it would be over soon, but my poor child was inconsolable. Micaiah was sensitive but he’s ok. By this age, age the, he was ok with hair cut. This was way worse than what he used to go through. I didn’t know whether to run away and block my ears, or leave the kitchen and go comfort her. But I was also scared she’d want me to ‘rescue’ her from the discomfort, which would be harder on her because I wanted the hair cut to be completed and I didn’t want her to feel I didn’t care.

I went in anyway. she was in a terrible state and my heart just broke for her. These are the traits I wish I could get rid of for her sake.

I found a post by a barber who was cutting an autistic boy’s hair. He too cried and cried and at one point couldn’t take is any longer and jumped from the chair into her arms. 😭 Later, the cutting-and the crying-continued, and she too wept. As she said, “You don’t know what SOME parents go through..”

It was by far the worst moment of the week. That’s the bitter of autism for some of our children. I don’t know what happens with this when they grow up and are adults. I just know that the one boy is five years older than my child and still acts tortured. Which means we have many more years to go. As I described it to my chronic pain friend, she too said she was weeping as she read the description.

This is our Autism reality for one of our autistic children. And I know it’s the reality for others out there too. All I can say is, “I share your heartache. I hate it. I hate that there’s a bitter.”

And the sweet…

In some AAC groups (Augmentative and Alternative Communication) groups, the concern either from a very ignorant professional, or a desperate mom, is that if they teach their non-speaking child a different form of communication, they’ll never be inclined to learn to speak.

Now, considering I’ve read how speech impacts some adult autistics, or how they WANT to but CAN’T, I’m not into forcing speech anyway, I just want communication. So, American Sign Language… It has brought out more spoken words, not less. She looked at me at the start of the week when I said mama and repeated the word verbally while signing. When I sang the line, “I love Him more and more” to her, she said and signed, “more.” It’s as if signing ‘makes’ her speak more. I came across an article stating the same thing. That for many non-speakers, alternative communication actually helped them use speech faster than those who weren’t given an alternative method.

It’s worth it, mom. The hope is speech. But what if it never happens? Isn’t it better to start some form of communication than to have none at all? Let’s not force our children into boxes not meant for them. Let’s help them thrive and give them support to be who they are as happily as possible, not what we want them to be while depriving them of the option of communicating. And yes, there are some adult autistics who never learned to use any form of communication that we can understand. Not even physical gestures like mine does. And so, I know that even AAC won’t help.

I’m sorry. And I’m sensitive to that. But I won’t not rejoice over each word I hear from my daughter’s mouth. Nor each sign I see from her chubby little hand.

It’s the sweet.

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