I don’t want to say “Dear mom,” because I’ve seen many caregivers of both genders. I’ve seen very dedicated dads, and extremely protective grannies. Remember how the autism workshop I attended had many grandmothers there, wanting to help their autistic grandchildren? So no, this is not a dear mom letter, it’s a letter for all those who love and care for autistic angels.
You are shocked. You are shook. You suspected but hoped for the best. You know that disability makes life harder. That’s not the dream you had when you imagined being a parent. And let me be specific. I mean this letter to be for those who love children who aren’t able to express themselves clearly. It’s for those society misunderstands or looks down on the most. The ones people assume can’t reason, can’t think. The ones some parts of society views purely as a burden.
My son was six months old when I confidently stated he was autistic. He wasn’t making eye contact, he didn’t babble in his two years. There was just silence. He hated touch. He hated life. It was just too overwhelming, those sounds, smells, lights and feelings on his skin…
But today he speaks, he more than babbles. He touches, he smells, he appreciates, he loves with his whole heart.
Or, what if you’re the mother of a child like my four year old? What if your baby did develop ‘normally?’ You definitely didn’t think anything could go wrong with his or her development after 18 months of bliss. They were meeting their milestones, smiling, hugging, giving baby kisses, interested in you and their surroundings, loving their siblings’ attention, reaching out to you, to them. Love was so evident.
Until they didn’t do any of that anymore. Silence filled the air. It was heavy and loud. The smiles disappeared and the kisses vanished. You no longer seemed to exist. Where was your baby? Where is your baby? Who is this current baby? You never imagined having a child that stops to feel the ground you’re walking on. You never thought your smiley baby would not look you in the eye. You never dreamt their smile would ever disappear. The bond she had with her siblings disappeared, as seen in my main photo where my angel turned her back on her twin sister when she went to sit with her. Will your old baby ever come back?
I don’t know. I can only tell you that she or he might yet surprise you. My child is not the little two year old who was diagnosed. She didn’t want us touching her. If her twin sat next to her, or tried to touch her, she pushed her away- hard. Her words disappeared. And then for months after the terrible silence, we only heard crying and songs, oh, she sang. But now at age four, she actually not only doesn’t push her twin away, she even pushes herself forward in the bath, making sure as much of her legs as possible are touching her twin’s legs.
She even goes out to play with her siblings. Something we never imagined her doing. No, she doesn’t play with them, but she seeks their company. They feel a connection they thought was lost for good.
I don’t have my old baby. This one is hard to handle. She has terrible sensory dysregulation. She can’t tell me why she’s miserable so often. I thought she would have stopped crying by now. But ..she’s not the baby that was developing typically. She can’t tell me what’s wrong. She breaks my heart more than a speaking baby would because I don’t know what she’s thinking, this one is a mystery most of the time. She’s not the baby I had and she won’t be.
Autism is forever. But so is my love.
And autism doesn’t stay looking the same as it did.
So comfort yourself with that. Your two year old, three year old, six year old is not the autistic they will become. There is always, always room for hope.
We went from no words, to words asking for cereal, milk, soya milk, grapes and ice lollies. For us, she’s reached PhD status level! And that’s the beauty. Appreciate who your baby is even when it’s hard, who they might become will then be a bonus. I didn’t need words to be spoken, I just wanted communication. Even nodding would have been ok. (Ok, I still would prefer nodding too so I know I’m on the right track when I have to guess what she wants. I have to be real!) We didn’t sleep for three years until she was medicated for her extreme moods. And it’s not plain sailing even now though things are better, don’t think I’m telling you THAT either.
We had a horrific doctor visit today in fact. But as she screamed and everyone turned to stare in that hospital reception area, I held my head up high.
This is my baby and I love her with all my heart. What matters most is not who she was, but how to help her be the happiest version of her current self she can be. And that meant (for us specifically) getting away from the automatic doors and lights and strangers today. Tomorrow, it will be a different battle. But we will fight it together.
And I see that same strength in you in your weakness when you come online wondering where to find a school for them. It’s the same weakness I have. I am desperate for help. I marched with Autism Western Cape, begging the government to help us. The strength is in your deep love. You’re not giving up even though it is so, so hopeless and so, so lonely.
May the fire of your love for your child keep burning strong and bright. Keep advocating. They might not show you they love you in the way you’d expect it hope for, or in any way at all, but they definitely need you. And that’s what parenting is about, isn’t it. Being what our children need. Autistic or not.
They said I should write a book 