Just a Bit

Yes, my angel is killing us with her extreme anger and sadness. She feels deeply. Strongly. Loudly! I’ve lost my rest times, my video recording times because she has started not wanting to talk go out for a walk. And that means full out screaming and crying when they go outside. So I keep her so she can scream and throw herself around with me inside instead.

But, she is so loved. And she loves us. And there was just a bit of difference in her vocabulary. She always names what she wants- in general. Or rather, IF she speaks, it’s usually naming something she wants, or copying us. And even when she wants, she doesn’t even say the name half the time. But she used her words to communicate what she was doing! Not what she wanted.

Thankfully none of you ever miss it, but I used to share these kinds of positives on my WhatsApp status till I realised that some lady was being patronising and missing the reality. “See,” she’d say, “I told you she’d improve!”

Firstly, an increase in vocabulary doesn’t mean all the other traits of autism miraculously disappear. And my biggest challenge is not a lack of vocabulary. If she could say 1000 words but still wanted to eat and eat and eat, or still insisted on screaming when we can’t do or have the impossible thing she wants or stop her eating, would that REALLY be “progress?” IS it really an improvement? Not in what matters most.

Secondly, she has not started being consistent. She no longer refers to her dad as dinosaur. She says something and then stops saying it after a while and we wait months or years to hear it again. This is a momentary celebration. The ‘growing vocabulary’ moments are transitory. They pass. (For now) They are actually bittersweet because it teases us. It shows us she COULD say the words, she knows a concept or words, but just has a block or some neurological misfiring that doesn’t allow her to continue. It’s actually sad but in the moment, it’s also lovely.

So yes, she was playing with wooden blocks and when her dad came in from work, she told him, “Bocks!” As if to say, “Look, daddy. I’m playing with blocks!”

And that brings us to another challenge. She speaks with an American accent (Both twins learn better via the screen. And most kid friendly educational videos are by Americans😅 ) and she also has speech production problems. She mispronounces words. So sometimes we can’t tell if she’s saying waddle, or water. (Both with an American accent) If she says, “Penguin! Wadda wadda wadda” then we know. And it’s random. It’s not like she’s looking at a penguin when she says it. So it makes it hard to know what she is saying sometimes. Like bocks vs box!

But it’s there. One day, she will be able to discriminate better, I hope. I already know of auditory discrimination problems thanks to my eight year old having them. I see them in my very talkative four year old who says, “Huh” when she needs to process what I’ve just said. And it’s led to a difficult decision to no longer teach them a secondary language. They have BIG problems comprehending their main language. Building sentences, pronouncing…We have to work harder on that. They need to be able to understand what they are being told to do when they go to special school one day.

If my son doesn’t know the meaning of handsome in his primary language, why would I weigh his poor brain down with “Ndiyanxiba?”

Anyway! She told us a few times what she was playing with. She told us a few times what she was eating. And she loved us! We came in from a walk yesterday morning and she grabbed her dad and pulled him down to kiss her!!! Oh my word we were blown away! I missed it. (I was hiding the protein powder she is sure is for her!) I walked in as she was holding up her face for him to kiss her. (She hasn’t learnt to pucker her lips yet. So we know she wants a kiss because she tries to raise her chin towards us.) She’d not volunteered a kiss this year except once when she was super excited and happy and then gave me a kiss.❤️

Then she grabbed both our hands and chanted, “Two little monkeys jumping on the bed..” Not sure about being called monkeys!🤣🤣But I knew what she was trying to say, “I’m so happy to see you both!”

What did her twin come say when she spotted us, “You are back! We are family! It’s a family now!” Yep, they finish each other’s sentences.☺️

❤️❤️❤️❤️❤️

I love these children. With all their quirks! One day we will get an autism assessment done for my very talkative twin. And we will do OT as she has low muscle tone. But for now, we enjoy her funny sentence structure, the things she likes holding, the fact that she can’t eat unless she has a toy or something on the table next to her bowl, how she insists on a bib, and the routine she NEEDS or ELSE! And how she demands social stories from me. (We are told to tell our autistic children in advance what we are about to do next to reduce their anxiety.) She always asks, “After I eat then..?” Or “After I come back, then..?”

Some mothers hate questions all the time. I love them, especially from her twin. Having a child who can’t ask does that to you. I used to wish they could have an off switch after maybe 50 questions each day. But now, every word from every child is a blessing.