Many parents in the Cambridge group had complained that there is a huge leap from IGCSE to AS levels. They spoke of children being traumatized after exams, of terrible marks, of needing to start studying as if from the beginning with tutors and taking a further 12 months to truly be ready…
So while my children were excited to be receiving their results this week, I was secretly nervous. I didn’t want their confidence to have been misplaced.
My daughter’s wasn’t! She got a high B and an A! My son..I don’t know if anyone recalls my saying one of his signs of his ASD was how he answered English essay and composition questions… He was so sure he’d gotten an A after the exam but nope, he got a C. And a B. His poor sister was so devastated on his behalf that she wept in my arms for him. I’d secretly shown her his results so that she wouldn’t make too much of a fuss over her better marks, not knowing how he’d done…He wanted A and B only.
You win some, you lose some! Later on, she was able to have a big ole “Yay!!” moment 😊
For me, it’s a relief. They PASSED!!!!!!!!!!!!
I was able to delete my Geography and English folders tonight!! We have a lot to work on. Their remaining subjects are very hard for them and I already see the struggle. But hey for more, most of their high school battle is OVER!!
Hmm, our girl’s birth father always communicates. He asks how we all are, I ask him where he is and then check if he’s found any work or if he’s still living with his aged mother.
I’m worried. I don’t know why I’m so worried given it’s not been even six months’ silence, but when he has initiated contact, he ALWAYS replies to my reply. But his last message in October elicited a response from me, and he didn’t even read it.
Birth mom said she hasn’t heard about him in over a year when I mentioned the uncharacteristic silence
Yes, he’s not someone I’d want to meet physically. I would never want him to know where we live. But I do want to know if he’s dead. She doesn’t have contact details of his family, and given some allegations and rumours that have been made, and the knowledge I myself have of him being a repeat visitor as an inmate ‘somewhere’… I wouldn’t even dare ask her to find out from family. They broke up and it wasn’t just because they realised they didn’t love each other.
Life won’t give him any chances. Unemployment is high even for educated people with no record. For him…The life he lives, a life that is scary to me, is one that has high risk for him not being alive.
But it is sad. Life handed him a very bad script. He COULD only play the part he has played unless a miracle happened. What else can you do as a male in South Africa with no education, a very poor mother, and close family members who don’t keep the law? And a very poor social benefit system that definitely doesn’t give you money to live on?
I hope he’s ok. Or, I hope he’s at peace. And I hope he has no more victims.
ALL the supplements my four younger children are on. One is SleepVance to help my one four year old sleep. She will stay up till 1am, or wake up at 3am. So I have been buying that for her, and what I didn’t add in the picture was my nine year old’s melatonin. She is on 5mg after the paed suggested the original dose was too low for her and she perhaps needed 4mg. I can only find 5mg. Works ok!
One was chewable zinc, but my non- talking twin hates that specific gummy so I bought the syrup for her. Right NOW (the picture was taken two months ago.) they are all on the liquid one anyway, as it contains more zinc per teaspoon at a lower price, than the chewable gummies. It’s less pain on my back to dispense tablets than it is to bend down to each child and feed them a spoon of syrup. But yeah, the magnesium and zinc are cheaper in syrup form.
So, these are all supplements that research claims help with certain aspects of ADHD and autism. There are also essential oils but it…I don’t even know if THESE are helping, to add extra is just pointless. Mood, ability to think, reasoning, calming…You’re meant to ‘overdose’ them as it has been seen that most of these children lack these nutrients in the amounts non neurodivergent people have, but that would be even MORE expensive. And three are on prescription meds too. And even with these supplements, I don’t give every single one every day, to try slow down the usage. I DO give Omega 3 every day. But again, not in the huge amounts they state.
Why buy them?
Desperation. I struggle with the symptoms more than the children do. It’s emotionally taxing, and now that my husband has been on leave, he FINALLY gets it. He finally sees the pain of raising our non- speaking four year old who can’t communicate in a way we understand and wants/takes things that she shouldn’t have, and wants things done that are impossible to do, leading to mega tantrums. (Like wanting to balance an orange on top of a pen and acting as if WE are refusing to even when we show her the things she wants are physically impossible.)
He finally understands the non-stop heartbreak of watching your precious child not able to put you in her world. And it is breaking his heart. I downloaded a playlist of specific classical songs that research has shown helps with brain development. I call it “Brain music.” I play it when the children are eating. Research claims 20 minutes a day would be perfect. I don’t always get that because the very angel worrying us the most is extremely mobile, getting up during meal times and going all over the place.
But I AM thankful that both twins love it! Classical music isn’t always lovely sounding! But my talking twin (A) will start making her constantly present bunny dance, and shouts, “ It’s brain music!” And my non- talking twin stops chewing, and gets this look on her face as if she’s digesting the tunes. With an enigmatic smile on her face. It’s too sweet! It’s like I’ve given them a huge treat.
Yesterday, my husband wondered how much an e-speaker would cost, so when the twins have quiet time in their rooms, we quietly pipe brain music into our non- speaking twin’s room, “for my poor girl especially.” Now he gets it. Now he gets it.
I can never explain to those who don’t live it, the constant strain of having all these children with significant challenges, but especially having HER- a child we so desperately want to reach but can’t.
I tried to join them for family worship two evenings ago. I stopped because both twins see me as the FoodMaster, constantly asking me for stuff to eat and drink when I pray with them and when I put my talking twin to bed. They never do that with the others. My non-talking twin grabbed my hand, pulled me and struggled to finally bring out “p-p-peanuts and raisins.” I congratulated her for asking for them! Then she took me to the FREEZER and gestured for me to get her an ice lolly. She has asked for them by name at least three times in her life. But that’s the nature of the game. Abilities she had just disappear. She no longer calls her daddy, “Dinosaur.” But she doesn’t call him Daddy either. I preferred dinosaur to nothing.
But yes, the word meaning issue is a struggle I’ve noticed for a while now. She will say a word. Blurt it out after great difficulty. But what she says isn’t what she MEANS. Like meaningfully looking me in the eye and randomly shouting out, “Dolphin.” I can tell that’s not what she wants to say. And it’s a struggle in my eight year old son too. He will string together sentences that are grammatically correct most of the time, but he has no clue what the words actually mean. And he will throw tantrums thinking what was said meant something else. I ask him when I can tell that what he’s saying is ‘wrong,’ what he means. But he can’t re-phrase. Like when he has just returned from a drive with my husband asks me, “Does dad have driving skills?” What does that mean to him? And of course he does, given he has just driven him. So what does he mean? It’s scary and draining. How do you change it? How do you fix the brain so that you all understand each other?
I wish I was able to reply to people. I was brainwashed into being a people pleaser. To be quiet. To not even explain myself in case that got me a beating. And sadly, that lesson has remained ingrained in me even today.
The woman who thought I was a domestic worker..then upon hearing I lived in the complex she asked if we had bought the home or were renting it, I should have asked her what it had to do with her.
I didn’t.
The relatives who send me stupid messages about the Bible being fake, about how I should change my values as I’m sick because I don’t believe as they do (my values which are not harming them and which I don’t even share with them ie. Speak about with them), I should be able to tell them they are wasting their time.
When someone tells me how wicked my mother was while ignoring their father’s guilt..I should be able to tell them they are talking nonsense. Like Job, I should be able to say as he said to his useless ‘friends’ in chapter 13, “You think you’re the only ones who have knowledge. I’m not inferior to you. I know as much as you do, and I know that what you are saying is a lie.”
But I don’t. I dislike conflict. I just keep quiet. I’ve only done it with one friend, and even then, she’s not being stupid or mean or unlike like Jon’s friends or these relatives mentioned above.
2024 is seeing me focusing on what I can control, on my health, on those who suffer through no fault of their own, and on being a good friend to good people.
But yes, I wish I had lip. I wish I could retort back, I wish I could call out racism when it happens. Not swear, not curse, but show that I’m not inferior, and I have as much wisdom as they do. Maybe one day I’ll grow up!
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.
Birth mom didn’t feel comfortable with seeing our girl while at a relative’s place as they don’t know she’s placed a child for adoption, so it was just Mr and I..this time!
I have nobody in my shoes. And the one friend who is very adept at putting herself in my shoes is always “very busy” so by the time she has responded and put herself in my shoes, I’ve got a whole new pair of shoes on!🙃
So, I will be doing a video sometime soon on going no contact with my birth family. How unnatural that is. All around me, my friends had these awesome mothers. Mothers who mothered ME when I visited them. Parents I thought and KNEW I deserved. But..it’s time to end the cycle of pain. And I’ll lay it out via video. And why? Well, I think you’ve read a bit of why, but the why I’m referring to is, “Why a video?”
I heal through the stories of others. There’s a man who said one needs to have a qualified professional guide them but many comments stated how they can’t afford it, or more worrying for me with my back pain that would be worsened by sitting through counseling, there are no trauma qualified counselors in their areas anyway. Or they try, but the counselor /therapist tells them to “make peace with” their toxic relatives, ‘forgive them’ and KEEP EXPOSING themselves to the trauma.
I’m not going to waste money and time and health to potentially sit through someone ELSE who will invalidate my pain. I get enough of that for free! I am learning more and more to not share with others because unlike that one person in the above paragraph, through no fault of their own, people can’t read nuances. Or don’t wonder about the impact something has on your mental health. For example, let’s pretend I’ve told you that my favourite aunt just ranted and raved and swore at me. And you just say, “Wow, so much for her being a Christian.” But never dive into, “What!? So all these years she has been fake!? Oh no. Do you feel betrayed? How did you feel?? I can’t imagine how I’d feel if someone I loved turned on me like that when I’ve done nothing to deserve it.”
Or I tell you, “I have to accept that I will never have a father. I kept hoping and waiting.”
And get..no response.
I can’t put into words how silence is violence.
And so how will I heal? By telling MY story. I set up my channel to inform and to help. And the help I received this morning was from others’ videos. By helping whoever might come across it in the future, I will help myself.
By expressing myself fully, I will heal myself by taking the power into my hands- there’s also violence in this cultural notion of “don’t tell people what’s happening in the family.” It’s usually said by the people most harmful and hurtful. Usually said to the victim of their toxicity. Nope. I will say what I want!
By not waiting for a “I can’t imagine the disappointment and hurt you’re feeling” that you’d expect from someone you’ve unburdened yourself to, I save myself the pain of invalidation. A camera is just recording. I don’t expect a verbal or written hug from it.
Win-win. Someone else might weep when they come across my experience that mirrors theirs as I wept earlier on today. Weeping is cathartic. You finally allow yourself to start the mourning process. And nobody will give me an end date to mourning, just like I don’t give anyone a timeline to end their own mourning.
We were a very close knit, (and I THOUGHT) loving family all believing in the same God and wanting the same for each other. I was wrong. To finally realise that I was wrong, that I truly am just something to be USED..not a human to LOVE, is …You’ll find out later. AFTER I change my number…😝
There are no big highs! There are no flashes of hope, no good news, no sudden surprises…There is no family gathering no to make the author ‘feel’ better. Instead, the one blood relative I told always forgets that I said anything was wrong. There’s no big church drive to help out…
There’s just..silence.
There’s no meticulous healing, no progress. It’s all just a hard, hard slog. There’s no sudden, “Oh!! I’m so excited! My children: have defied all odds and are…”
This is truly a very boring diary/journal of chronic illness of all sorts. Of ‘incurable’ neurodivergence. Of hard times.
Where are we?
My cousin (in law) in a different province sent a message asking if “we are winning” the infected finger battle. Not yet, I’ve now done two full rounds of antibiotic and all I have to show for it is an invisibly sore tummy, a lack of good bacteria in my gut, and less money in the bank.
Oh, and a possible NEW infection two fingers away from the original one. That red area is painful. And raised. Exactly how the other began. I’ve started salting it. I don’t know how far we will go with that.
So. The year is coming to an end. I’ll have had a grand total of EIGHT injections aimed at slowing AS down. After a whole 12 months of diagnosis…A mere total of eight weeks. A useless eight weeks as it wasn’t even consecutive weeks.
We have children who I believe have bit their vision therapy ceiling. I know I haven’t touched on it. I don’t know if any reader even has any children with visual processing problems, but here’s my update anyway.
We aren’t really moving UP much. And also, when I was reading how to introvert their very slow processing speed, it was mentioned that it CAN improve, IF there’s no cognitive disability. Ie. IF they aren’t intrinsically intellectually impaired. If they are…I can try but won’t get far. And that’s what I’m seeing with vision therapy. Their brains aren’t ready to keep progressing, even though I’ve added extra time for practice of previous exercises. This can be completed by weekly exercise and I chose every second week. And took breaks for my surgery and just because I knew they weren’t ready to go up a step.
As is typical for autism, they are struggling with left and right. And we are at a point where they are meant to be practicing that. But it’s not sticking. It’s like my nine year old angel who still can’t count to 30.
We are stuck.
Everything is stuck.
My body, their brains… I don’t even know what to hope for. Where to go. There’s no’ therapy’ to force your brain to cooperate. And vision therapy requires a cooperative brain. If I see it’s frustrating them, I’ll quit for a while.
It’s a scary time. Infections that aren’t leaving. A huge AS flare that began yesterday. Children’s problems that can’t be helped.
I feel stuck. I wish I could make things easier for all of us.
Trying to keep my hand elevated. Watching the redness return that my rheumatologist had said must be gone before I inject again, my cuticle slowly draw up away from my nail, more of it with each passing day, I was going to be honest about how I feel today.
I’d had a serious question on my mind earlier on when I lay down in agony after only managing to clean two rooms -a bathroom and a bedroom. And having already begun my AS exercises in excruciating pain by 6:13am, unable to continue.
It was off putting. All these “Merry Xmas” messages from people I wouldn’t expect them to come from. People who didn’t care to think that it would be possible that I was feeling anything but happy as I contemplated the question I allude to above. People who didn’t have the courtesy to ask, “Hey, what kind of a day is it for you? How’s the AS treating you today?”
“For me, is there even a difference between quality of life and quantity of life?” was what I asked myself as I soaked my throbbing finger. It’s usually a question asked when treatment impacts the dying patient even worse than the disease being treated, but knowing that the treatment is keeping them alive for a just a bit longer. But what about me? I have no real quality of life. I am in pain, I can’t use my hands, I can’t iron the mountains of ironing (Ironing Lady is shut, for obvious reasons.) I probably shouldn’t have even hung the many loads yesterday. I don’t have any AS treatment going on, so I can’t say if the impacts are affecting my quality of life.
It was going to be a post along those lines. But it won’t be. There’s no point.
Instead, I’ll post about how during quiet time, I went to my usually non-speaking girl’s room and just lay down next to her. She hugged my face, smiled, grinned…I took her leg and did some deep compressions around her joints, counting to ten as I moved up to the next joint. Then she said, “Eleven…” and looked at me out of the corner of one eye.
I said, “Twelve.” She continued onto 13..and so we took turns till she eventually shouted “Twenny!” Then she covered me with her sleep sack. As she lined her book and puzzle next to each other, she went to the wardrobe and took another puzzle out and lined it up next to the first puzzle, and said, “THREE!”
Unlike her bigger brother, there was no need to count one at a time. She just shouted the correct number. Then she added two more items and shouted, “Five!”
I hasten to add something I’ve seen in one person. Speech production isn’t a sign that autism is “going away” or that she’s “getting better” and soon all will be perfectly ‘normal.’ It shows that she’s growing up, much like when a baby goes from crawling to walking. It’s a developmental milestone. But given how she recently spent a few days saying NOTHING, it’s not a sign of ‘progress’ in the sense of knowing that tomorrow she will repeat the counting.
But it was LOVELY when she called me “Mommy shark” yesterday. I hope she does so again one day.
And that’s what I’ll end on. Loving my children, being a good example, wishing I could care for them properly, but thankful for our moments of connection.
It’s well-meaning, I know it is. But one autistic child’s journey won’t be like my child’s journey. It’s like telling me, “You’ll be ok” when you ask how I am and I tell you it’s not going great.
Someone very well-meaning sent an article about a child who started talking at age 8 and told me it would give me hope. But it won’t. Because I know of many autistic adults who even in their late adulthood are still challenging, unable to be ‘still’ and don’t talk or even communicate in any understandable way.
Those articles don’t give me hope when I know the reality and the possibilities. They certainly don’t help me today when life is extremely challenging and it’s taking everything out of me to stay upright and to keep my smile right NOW. I can’t afford to even think about tomorrow when today’s mountain is very high and I am yet to climb it.
Well-meaning but meaningless. My own life has shown me that things do get worse. I’ve learnt to stop hoping for better, because better never comes. How many times did we hope that 2023 would bring no surgeries but instead I ended up with two and one already seeming to be needing to be re- done? (Symptoms seem to be starting up again. And it’s not just me being crazy, the urologist only wanted to see me a month after surgery to check that I was ‘still’ ok or if I needed more help.)
I can’t find hope in some strange child’s improvement when I know of many adults who didn’t ever improve. That would be..not me. I’ve seen worse. It can also go that way.
I just need my hand held today. I just need to know today’s heartaches are seen. That’s all I need.
Only God can make promises or offer hope of improvement, because only HE can fulfill those promises and make those hopes reality.
They said I should write a book 