“Thank you for these poems, Mommy! They’re so amazing!” Said my little joy, Naynay aged six since the 16th of this month.❤️ “Thank you for doing school! I luuuurve school! It’s my favourite thing!”
My girl is proving to be a challenge. She’s perfectly at grade level for Maths for America, advanced for South Africa as we’ve always known and as our educational psychologist noted. She runs through every Maths situation and understands the first time I explain it then races through before I’ve given the next instruction! She has a wonderful memory. Glorious memory that even made her ten year old sister exclaim yesterday.
I have added some Cambridge subjects to her school life because she has such a thrust for knowledge. As I showed Ammy what she’d do next (I put them at the same grade level for Geography), and what her textbook looks like, Naynay exclaimed, “I’ll show you the two friends! There are two friends to teach you!”
I had no idea what she was talking about. But she sure did! We had only done two lessons in one day last week or the week before, and she recalled that there were two children in the textbook who teach! Her sister had leafed through the book and SHE hadn’t noted them!
So what’s the delightful problem?
She’s too ahead with her reading and spelling! I’ve moved onto a new grade for those even though she’s at the lower kindergarten level for Maths. But she smashed the first story in record time! So much for it hopefully being challenging!
But as you saw in the video, a child who can read the word “ awesome” is NOT going to struggle with these words below. Nor with the activity! She did this type perfectly twice before so I don’t plan on making her do it again today!
She noticed the box with her next grade level had arrived and she was excited!! So excited! “Look! Look! Our name! It’s our name on the box! The Good and the Beautiful!” (No, I can’t tell you why it’s “our” name.) She quickly grabbed her grade 1 reader. And didn’t even struggle except for typical ADHD stuff.
It’s glorious having THIS kind of problem! I’ve bought lots of books at different levels that will be stimulating and challenging. As she said about her list of words in her current curriculum, as she said about Maths, “This is so easy! It’s boring.” And so, on we move!
I used to dislike hearing people say, “Happy Sabbath” when greeting me at church. I’m not worshipping for happiness, to feel good, but for blessings that will help me become good, holy, pure in God’s eyes. So I’ve always deliberately said, “Blessed Sabbath,” or, “I hope you will have a blessed Sabbath.”
Nothing strips you if the FEELING of being blessed as pain. Emotional, physical, both types. If you aren’t resting from negative experiences, you don’t feel like it is a Sabbath. Sabbath is meant to bring us closer to God and further away from the earth’s charms and harms!
But not when the devil has your health and your children firmly in his grip. You feel as harried as you would on any other day. Yes, you might not be “doing school,” but you’re still teaching. And AS, ADHD, Autism and intellectual impairment and everything else, have no day of rest.
And so, a day which began with some hope has not ended yet *gulp* , but has come with some hard moments. I’ve been warning my ten year old, our helper has warned her, but still, despite us telling her to stop touching and catching bees, she got stung yesterday. And her finger is still sore and swollen and red at the tip. Normal, but it’s the fact that she caused it that makes it worse. I don’t like worrying about my children. It takes away my peace. And knowing it was by choice sadly doesn’t make me STOP worrying or being sad about her (according to Google) few days of suffering.
The teens have been here for almost a week now. I had THOUGHT I’d be able to take the children to nature on Sabbath last week but my body said no. And it’s still saying no. So I told them they could go wherever they’d like and so it was, they went to the aquarium.
After doing some Bible reading, I felt in a hurry. We took a short walk. And that too is a big deal. We used to take walks in the evenings when my husband is around when the children were calm- twins in bed and middle two reading or playing calmly. But now, there are no teens to watch over them in the evenings or on weekends anymore so we’ve been stuck at home. I could walk alone, but I feel like my limp when alone draws too much attention to me and I feel self conscious. And it’s not like it’s a power walk for exercise. Just a short gentle stroll. A third of the distance I could walk two years ago.😐
Back to the point. I was feeling rushed. We just had a few moments of ‘peace’ till the group returned. I came back home and settled in, trying to finish as much of their nature story as I could. But they arrived before I had finished.
And that is the crux of the matter. Two hours isn’t enough to give true rest. Because of their peculiarities, one twin pulling me when I sit with everyone, the other not focusing well when I’m teaching face to face, I have to then record their videos. Edit them, find engaging pictures. And then put it all together. So I’m sitting.
Pain.
They returned from the aquarium. And chaos started. I went to go warm up lunch and dish it out and my girl began, “Car. Car. Kayi. Kayi.” (Don’t know how the vowels change.) Her dad always says we should say no. After all, they’d gone all the way to the CBD to the aquarium, it’s enough. Nope, not for her.
So I went to hide at his urging. But the girl wanted her car ride come hell or night water. And the loud tears began.
Ten minutes later, I gave up. My driving leg has been giving me a lot of trouble. But I couldn’t handle the fact that SHE was unhappy, and everyone (perhaps excluding her father who was saying no to the car ride) else also had to be party to it. I needed to make things better for the other children.
So I took her for her drive.
Calm restored.
But not my own.
For just an hour after that, I found a mess that didn’t make sense at first. Till they told me they’d been melting crayons with hot water. I know ADHDers are creative. But at this point, I wish all their creativity was in a positive direction. Not something resulting in MORE work like their little sister’s brand of autism results in. How will I even begin to clean this?
And this is the crux of the problem. My body doesn’t allow me to be watching over them wherever they go. And I have to parent and teach, feed and launder. I can’t follow them outside to ensure they don’t get stung by bees. I can’t drive all the time. What happens when my joint on that burning bad right leg is fully fused? Or I’ve caught an infection I don’t want them to catch so don’t want to sit in a car with them? What happens when I’m in an even worse AS state and can’t drive her anywhere? How will she and all of us handle her screams and cries? I can’t be hovering over them to make sure they don’t melt crayons. I can’t do it all.
And because I can’t do it all, lots happens that definitely does not feel like a blessing. That short break I got when they went to the aquarium didn’t feel like one at all. Because I was still giving my body to my children. Not by choice, but because their special needs demand I record so they can learn.
I feel like the strain is aging me.
Today is definitely not FEELING happy nor blessed. It’s stressful, PAINFUL and sad. My pain levels are increasing. Even at night I dreamt I had fused up and was planning surgery to break the bones and fuse them in a better position.
The word “No” is very valuable. Children must never learn that they can have everything they want. She has already taken her nine year old sister’s doll that I gave her for her birthday – necessitating my buying a new one. And my angel 9 year old hadn’t even complained about it.
No.
You cannot have everything you want. Things belong to other people and they are for them, not for you,
A lesson her father tried to teach her today when she wanted congratulatory balloons he received yesterday when it was finally announced at his workplace that he had gained a new role. I say finally because we knew and were waiting for the official announcement so when someone at his office sent me the announcement, it wasn’t news to me but she thought it was- telling me to spoil him. I had already said my words of affirmation when he told me that the Board has decided what they had decided.
“No” has given me 50 minutes of screaming. She has thrown things around. Tried to break her cracker into multiple pieces. Has pushed me. Has tried to bang her head on the wall. Picked up the landline and threw it down. Has tried to bite her sister – the nine year old…
Oh my word. What a morning when my pain tablets haven’t taken and I just want to cry ANYWAY.
The positive is that the Endodontist was just as angry as I was at the dentist who refused to fix their non permanent crown. Its is the first time someone in the medical field got angry at someone else. And that made me feel better. Pity that appointment wasn’t today.🫣
PS. Peace has reigned. She’s doing her usual happy shouting. I wish my heart could recover as quickly. I wish all the physical stuff didn’t make me worry about the future… Next time, the phone might break. Next time, she WOULD bite her sister. Next time, she might push me over. Next time, she MIGHT fracture her skull. But for now…I focus on the now. Time for me to phone the hospital radiology department and book the bilateral SI joint CT guided injections. Ouch.
It’s a pity not even “specialists” get this fundamental truth. Not even the very same specialist who told us of a non- speaking, unable to type, 21 year old autistic who, they found out by mistake, COULD type- in Afrikaans. They’d been trying in the wrong language. Somehow, pathways got formed in a different way. She had learnt Afrikaans at school but because the family wasn’t Afrikaans they didn’t know her ability till they had an appointment with the specialist, who is Afrikaans.
The young lady took the phone and started typing whole sentences to her! Telling her to tell her parents she does understand them but just can’t tell them!
We need to stop trying to understand neurodivergence with our neurotypical brains! It doesn’t work! They often say that “autistics laugh or cry for no reason.” If I had known this, I’d have KNOWN my first son was autistic! He used to laugh and talk and talk to- nobody! I always assumed he had an angel that was talking to him. My undiagnosed four year old does the same. Whole conversations at top volume. Laughing, giggling, happy- with nobody.
My non speaking angel laughs! And it’s from the heart. Something has tickled her and I always wonder what she is thinking of when she suddenly bursts into laughter. An autism mom whose adult son maybe can produce two sentences a day and ONLY if asked a question or conversation is initiated by someone ELSE, said that he laughed at funny movies he was recalling in the moment. Isn’t that cool!? To experience the feeling so much that even the memory provokes deep laughter as joy? Wouldn’t it be cool if we too could recapture joyful or funny or happy moments in that manner, feel them wholeheartedly?
My friend, A, is imperfect. Just like me! I’ve dumped her, returned, complained about her, rebuked, laughed. But we grow together. And one area I have mentioned is one in which both of us felt great ire and I don’t know how much time she’d even spent with my girl at that point! I think it was probably ..not yet! I don’t think she’d met her.
But she knew. She knew the dire predictions of the neurologist that implied that our girl was, and would remain, a walking ‘vegetable’ were false. She hated that she assigned stereotypical traits to our daughter- like saying that she liked a certain gluten-free teething biscuit because of its colour when we had very specifically told her that she didn’t like certain flavours things at the time!😡Autism doesn’t make you one dimensional or unreasoning. It was DEEPER than appearance. We knew it because her bottles hide colour but do not hide taste. And she had definite juice preferences too- which we HAD told the neurologist. And like any proud mom, A was ANGRY on our girl’s behalf. “How dare anyone try to limit this angel!?”
People see limits. People see “not normal, senseless.” We wonder why. People see, “Doesn’t play appropriately.” We see logic, planning and reasoning.
Don’t limit our children. And don’t expect typical behaviour! Just because she doesn’t answer questions, doesn’t mean she doesn’t know the answer. I’ll point at something without asking, hoping she will speak..she doesn’t. But I won’t give up. I’ll ask her what it is- no answer. But I won’t give you. I’ll ask a leading question, “This is a ..?” And most times she will not reply.
But at random times, she will speak and I will know that she has learnt. Eg. Letters of the alphabet. She doesn’t name them when they come up on the TV screen anymore. Doesn’t mean she lost the ability to recognize them. She won’t answer when I point at them, or complete my sentence when I say, “This is a…” But she knows.
And she is VERY loud about it when she finally expresses it!❤️
We hung this up on Dec 27 for my now nine year old. She wanted them brought down and was NOT happy. But as soon as I brought her the letters down! She would pick one up and yell, “D! D!” It was lovely. She knows. Silence doesn’t mean she’s not taking information in. And thanks to my eight year old’s diagnosed auditory processing disorder which I see on my very talkative twin, I have shortened my sentences for my non talking one too. And wait a while for her to hear, process, and picture what I mean, then rephrase just in case.
(Her twin frequently says “huh?” when you speak. It’s not that she didn’t hear. She did HEAR but her brain hasn’t heard the words and MEANING in the SOUND coming out our mouths. It’s a very crazy household I live in. )
One day, I know she will find a way to show me more of what’s in her head. Because trust me my friend, she ain’t no walking vegetable. She’s a super star!
Vegetables don’t leave everyone else watching songs to go build.
My three year old -soon to be four-is a twin. We suspect they both are autistic but she’s more challenging because her feelings are super strong and she has minimal speech. When she wants something, she will take your hand and lead you to it. If she says “Mommy” know that she won’t say it again till a few months pass. If she says “toes,” there’s no guarantee she will say it again. She is truly what I imagine a minimally speaking autistic is like.
But hey, it’s a step from non-speaking. And if she goes back to no verbal speech whatsoever, I hope she will learn to type or use some other form of AAC to communicate with. I know some adults who just have never been able to communicate in any understandable way. I can’t imagine how frustrating that must be!
This past week, she has been saying, “Some mik” or “Zhoos” when she wants a milk or juice. I always ask, “What do you want?” And then after a brief pause, answering for her. (Last thing I want is to ever make her feel pressured to do something she cannot do, or force her to try do something her brain stops her from doing. Thinking of the adults who said they want to talk but the words become stuck as if behind a wall, and the mouth won’t produce what the brain is thinking.)
But today. Just now… She did it. She took my hand, led me to the fridge. I asked her, “What do you want?”
And for the first time ever, she answered verbally! I am teary just typing it! She said, “Ice lolly!”
I’m so so excited and so, happy!
I know it’s very inconsistent. I know it’s rare. But… It’s possible! And today was the day!
They said I should write a book 