Tag: autism

Perfectly Ok

Grace by any other name1 Comment

I always feared trying to educate small ones of differing grades. That was before I knew the extra educational needs and learning disabilities that would befall us.

What is perfect in the day of a sick mother of disabled children?

Whatever it is, it is impossible to attain. So, I will live with “perfectly ok.” Today, was perfectly ok. I limped to go collect our hope in two bottles and went to the bank and then wanted to crawl home and stay in bed.

But it was perfectly ok that I couldn’t. It’s perfectly ok that I feel tired. It’s not only the AS fatigue, it’s also the good kind of tired from USING my body, not only from constant pain and fighting inflammation. I like that kind of tired, even as it contends with my body’s innate fatigue that I wake up with and fight against daily.

It was good be busy. I love being busy. I love doing. And so, when I finally lay down so I could plan the next Bible story segment and learn the memory verse so I could make up a song for the children, it was perfectly ok that that didn’t happen.

Instead, just as I dragged my laptop across the bed and put my feet on my hot water bottle, my littles came in, my four year old leading them. “Can we come lie down in bed with you?”

Well, there went the silence and rest I’d been hoping for! Instead, I got some cuddle time, some Bible video time in bed and random conversation with my littles. It’s a fair trade, right? After all, the most important thing is to help them develop holistically, and that definitely includes emotionally, doesn’t it.

I didn’t do ANY of the school work I’d planned. I’d planned it before I knew I’d need an hour and a half to go collect my daughter’s new med, the Strattera. My hope in a bottle. Last week, during our crazy hospital stay, I told the psychiatrist how my non very talkative angel can’t focus. I try show her pictures, she isn’t interested. We tried sign, she didn’t look long enough to learn the correct sign for the word meant. We speak, she doesn’t copy. We try the iPad, she only wants one specific app- Starfall- and only one specific session. AND she is all over the place anyway, bouncy and busy. Never sitting still.

The psychiatrist asked if we’d tried any ADHD meds. I told her that (based on the extremely judgmental pharmacist who castigated me once when collecting my son’s Ritalin) I’d thought I have to wait till she is six years old for an ADHD assessment, and even with age six, the pharmacist was angry at me and all the professionals who agreed that my boy who was six years old at the time (and our other girl) has ADHD. I wish he could live my life. I wish he could try learn with multiple thoughts buzzing in his head. I wish he could try memorise simple things with other things intruding and stopping him. Seriously, I asked my nine year old what one plus one is and she said two. I congratulated her and she said she’d been guessing.

After all these years, not much stays in the memory despite different learning methods and just rote learning, even with medication. Imagine without!

So, psychiatrist said Strattera should take 6-8 weeks to start working – if it does. It’s generally also sued for ADHD but nobody has ever suggested it to us. The psychiatrist hopes that then her head will be calmer and able to take in more, to learn. My nine year old asked if it would make her talk.

That requires prayer and at this point, a miracle. I told her that what I want is for our girl to learn to communicate, whichever format that may be in. We will learn with her. We just want her to be able to learn.

And so, we have two (out of three- the pharmacy only had two and our usual one close by had zero) bottles of hope. Our hope in a bottle. We need a huge dose for all of us! Today, it’s about my non l-talking angel who moved our hands to get what she wants except for the words, “Cereal, juice, peanuts and raisins, ice lolly..” She certainly has her priorities sorted.😉

If we look at our problems individually, we will faint. Sleepless nights of pain, my right hip seems to be fusing. It’s not behaving at all and it’s scaring me. My limping has increased even according to my trusty Apple Watch. To know I have such precious and so young (intellectually forever young and struggling) is daunting. I can’t do it NOW, how in the world will I do it next year?

And so, today I focus on our hope in a bottle. And I focus- for this blog post because sadly, life isn’t like that, I can’t compartmentalism all the things and problems – on the times she is happy. My daughter’s anesthetist asked why I was limping. I explained that I have AS. His response, “Please tell me Amarissa also doesn’t have it.” Then he did an impromptu check that I still have neck mobility after telling me that AS is an anesthetist’s nightmare. Yeah, I can’t forget the people who can no longer have surgery under general anesthesia because they can’t ve ventilated due to the curve they are stuck with. I also can’t forget the man who thought he was fine and when they inserted the breathing tube, it turned out bone had grown INWARDS into his throat. The bone broke off and unbeknownst to the theatre staff, he choked on the bone as it occluded his airway.

AS is a beast. AS with special little ones is hectic. I changed our angel’s diaper and wanted to cry. How will I do this next year? And the year after? Will she be able to comprehend if I tell her to kneel so I can wipe from that position rather than on her back? She doesn’t comprehend much now… Or, doesn’t react as one who does. “Give to Ella” means nothing. How will this work? And the siblings who also need lots of work? How will we do this?

I don’t know how. But we will. We have no choice. Somehow, we will keep going, even when we don’t feel perfectly ok at all.

And though we didn’t do any of the book work I’d planned, we did lots of physical and occupational therapy home exercises. We were happy. We laughed, we cried. I did laundry….We did stuff. And didn’t I say I like doing? What we managed, was perfectly ok.

Also, I got validation. I researched lots and read books by qualified doctors and researchers. I buy the supplements…The psychiatrist if we’ve tried magnesium, yes. Zinc, yes. All of them, we are doing. Not only for our non speaker, but for our ADHD girl with learning disorders who landed us in hospital last week. Basically, I’m doing everything that I can. The impossible is not in my hands. I need to learn to be perfectly ok with that.

She suggested we take our girl for an educational psych assessment. We’ve done two already in her life. I sent the report and our vision therapy report. Again, validation. I just wish I could ram into my thick skull the knowledge that I am not failing my children. It’s hard to believe you’re doing perfectly ok when the majority of your six are struggling so much. But we must.

Give ourselves the grace we would extend to others. Start with yourself first.

I Lub Yoo

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One of my greatest heartaches is seeing how Twin A wants to live the famous twin bond but her sister’s level of autism doesn’t allow. I feel so heartbroken for her when she wants to play with her twin but is rebuffed.

And so, my heart was full this week when I was told by my teen daughter that at bath time, Twin B grabbed and hugged her talkative twin! I kept trying to catch the elusive hug but had to wait three days for me to catch it with my own eyes! She kept hugging her sister, she turned her around and hugged her from behind…She became so effusive that she almost drowned my poor girl, who thought it was hilarious that her twin hugged her head then tried to put it on her lap. A lap that was fully submerged in the bath water!

Today, I went into the bathroom and was chatting to the girls when Twin B looked me in the eye with a big smile. We had been talking about how she had again been hugging her sister, and she said, “I lub you. I lub yoo!”

My heart was so full!! I really thought she was about to say, “Mommy.” Her expression with its great concentration had showed me she wanted to communicate… I didn’t expect I love you! I say it always and never expect her to just come out and say it.

Yes, the rest of the day she continued as normal- the normal seen in the video below. But for those brief but wonderful moments, she was able to force herself to enter my world so I could know her thoughts! Ooooohhhhh!!🥹❤️

Wins

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Since Thursday, I’ve been consistently limping, walking off because of the stiffness in my pelvic bones. I was even stumbling because I struggled to always lift my feet high enough off the ground.

This video was yesterday, Saturday morning. I had never watched myself before. My husband did once complain that while he had a break on a work trip and the teens were at exams, he had a peak at our security cameras and he didn’t know where I was going, about to take a walk with the small four while clearly limping.

Since Thursday, I’ve slowed down. Pain extreme. Exhaustion bad. I didn’t even reach 9000 steps on Thursday yet my usual average is between 12000-14000. Yesterday was worse. Despite all the pain meds, I didn’t even get a minute during which I could say, “I’m pain free.” It was hell. The pain was consistently an 8 out of 10. You couldn’t ignore it.

Today, for three and a half hours, I had almost no pain. I could fully ignore it and only felt it if an inflamed area got bumped!! It was lovely! I was so scared that yesterday heralded days or weeks of no relief whatsoever.

That’s a win for me! I know the nights are bad, and the mornings too. But I’m hoping my day tomorrow will be like today, at the very least.

Second win.

I haven’t heard her calling me mommy in a year. She stopped even saying, “ Dinosaur” for her dad. But she is still saying words, naming the foods and beverages she wants! That’s so different. All other times, her words would disappear for months.

Also, if you listen carefully, she whispered, “Doll” twice! It’s not the first time she completed or added to something I’ve said. As she watched me pouring cereal into a bowl for her, I said to her, “I put it in!” And she added, “ Into the bowl!”

Other things have stayed the same but a bit better too! I noticed that a “blister” she’d had on her right hand was now looking more like an infection so I asked her dad to take her to the doctor yesterday. Honestly, even if I didn’t have AS, I wouldn’t want to take her. She experiences so much suffering! Things scare her, she wants to leave and not wait, she wants to pull me out the doctor’s rooms and doesn’t want to be examined. It’s traumatic for both of us-her being ‘tortured’ and my dealing with her very big emotions while wanting to cry along with her.

Her dad was also not feeling up to it because of her screams and cries and how helpless he feels. He said he’d take her only if or our eighteen year old son went alone.😅I chose my son, who was NOT enthralled with the idea.

She came home screaming.

But guess what, she didn’t scream going in. Didn’t scream or even want to leave while waiting to be seen, and except for when the doctor wanted to measure her height, she allowed him to do other checks!! The ONLY reason she came home screaming was because near the END of the appointment, she spotted a wooden piece of art that she wanted to take with her.

And while waiting for the appointment to start, she spotted her favourite calming object- a plant! Her dad asked, “What’s that?” And she actually answered!! “It’s a tree. It’s leaves.” And she tried to pull her brother’s hand to pick it up.😅Thankfully she didn’t complain when the answer was no.

All in all, it was the best doctor’s appointment she’s ever experienced. Her anxiety and anti psychotic meds are helping! (We still get angry cries over wanting things to happen that can’t ever happen.) I was right that she needs oral antibiotics, and her brother came back much happier than when he left. I mentioned the being right thing because I didn’t want to send my husband on a fool’s errand and have him return telling me I was being worried for nothing.

Maybe one day she will answer all questions and tell us her thoughts and not just blurt out random words like, “ Tiger!” out of the blue when she does speak. Maybe one day she will answer more questions than she can’t. Maybe one day I will know that she UNDERSTANDS me when I tell her I love her.

Maybe.❤️

PS. The doctor asked if she didn’t need Ritalin or something because of how hyper and all over she was. I am so vindicated! Not that my husband said I was wrong in thinking she probably also has ADHD, but it felt good for a professional to wonder if it would “not help calm her down.”😅 We have over a year till she’s even eligible and I don’t even know how we’d assess her for ADHD given it’s all about ability to focus on tasks and how quickly one loses focus and the weak points that show typical learning disorders found in ADHD. She does not stay still! At all! But, we will cross that bridge when we come to it!

Will I Get Used to It?

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New Swing. They Love it!!

Is it possible to ever get used to a world in which my daughter, R, will never ever answer a question? Never have a conversation with me? Never tell me something is sore, funny, yummy..? Is it possible that I will accept it in the next 20 years?

I don’t think so. Sylvester Stallone’s son is a grown adult over 30 years old and the son’s mom still hopes he will speak, converse. We can’t give up. I guess it’s human to hope. You forget all the other months and years of silence and hope today something will be different.

My angel…She loves sitting in her room arranging her toys- very specific ones- in different ways. She can spend hours alone in there. I go in…Sometimes she gently pushes me, asking me to leave her in peace. The other day she shut the door on her dad when he peeped in. Most of the time, she’s happy to see me. Still no, “Mommy!” but she doesn’t cry, doesn’t get angry. But also doesn’t let me engage in play with her or even next to her. If she’s playing with a set of blocks and I take my own set, she takes my set and adds them to hers. No conversation.

Sometimes it’s ok. Sometimes I’ve grateful that she pulled me to her room to go watch her play. That satisfies me all day long! But sometimes, my heart breaks. Yesterday, I took some pictures in. Just simple body part pictures. She wouldn’t look at any of them. Definitely didn’t repeat any word I used. I then took her doll and asked, “This is..?” She blurted out, “Baby!” Then I pointed at her bunny and she said, “Doll!” I asked her to touch the doll’s hair and she did.

Then that was it. No more engaging. She was back firmly in her world. No talking about feet, toes, no matter what I did. She used to love touching my toes when I moved them, and once suddenly shouted, “ Toes!” when I wiggled them. But not this time. That was our ‘conversation’ the entire day.

So, knowing she watches video and repeats what she hears on video whereas she doesn’t often repeat much of what we say here at home, I just decided to teach her a different way. Can’t wallow in heartache all day, can I? I have a child’s brain to try teach! And her twin sister will benefit too, learning from a South African accent instead of only hearing and relating the American one she hears when watching toddler videos.

I did this for the children here at home. Minus the introduction, of course. And dear readers, my silent angel giggled and giggled and laughed and laughed when she watched it!!!🥹🥹🥹

I may not be able to reach her in a typical way, but I can reach her. It was made for them here at home. Just something random to help them learn. Very specific for our needs – building vocabulary, using sentences and teaching a lesson- no running in the house! I cut the video, it was bad. But my very talkative twin is fine. (So much for the orthopedic surgeon who said she must not run, not fall for the next two weeks to allow her arm to heal fully!)

This is a different glimpse of our homeschool life. Needs must…

PS There are some moments… On Friday evenings, we say the Lord’s Prayer when praying. Yesterday, she met saying, “ Our Father…” before the roaster began, and during. 🤣 “Our Father…”

And this is why we don’t give up. Connections are forming. It takes years- we’ve said the Lord’s Prayer every Friday since the teens were babies! And yesterday was the first time she showed us that she ‘hears’ it… And so it’s disheartening in the moment, when she doesn’t look or seem to see it hear. But I pick myself up and keep trying. Why I keep trying to form connections throughout the day. Firstly, why not? And secondly- because I hope springs eternal. The sound of her laughter makes up for the sound of my breaking heart.

My New Special School Weapon

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Well, one of many…

I went to look for new books at CUM bookshop at Canal Walk the other day. But they didn’t really have much. I chose maybe one book for my middle two, a biography for myself that I’ll lend the teens when I’m done with it, and then this card game.

My aim with educating my middle two, is to make sure that their foundation is strong. Given they are learning disabled, why force typical learning for their non typical brain? So I mix things up. Sometimes a page or two from their normal school books (Christian Light) and anything therapeutic I can put my hands on, always bearing in mind the specific challenges they have.

This one seemed perfect for working their working memory. They have four of each card so up to four can play.

Today was my first time using them with my eight and nine year old and we played SNAP! I chose 4 pairs of cards upside down so I don’t weary their brains, and they each would pick up two cards and turn them over. Then put them back upside down and the aim was to hope that the players recall where each card was so that if they pick a matching one, they go back and pick it.

And before I could even mention it, Amarissa asked if they have Bible verses on them! Win! So we discussed the animal, the number on the card, and the verse..and worked on working memory in such a fun way that they were sad when it was over.

Win!

As for my four year olds? Play includes learning so there isn’t much happening except my taking note of unusual speech patterns in my very talkative one and making videos that playfully correct them. And showing and modeling saying “Thank you” for my (mostly) non speaker who does ask for specific foods but hasn’t learnt to say thank you yet.

My twin above- on the left of the picture as we view it- constantly begs me to read to her. She’s obsessed with two books. A “Seek and Find” David and Goliath book, in which every left side page has some items for you to look for in the right side page (sheep, the sling etc) and God Rescues- a book about Pharoah and Moses. I laughed recently. She came to my room instead of going to bed. and asked me if I’d read to her. I said yes. She ran out my room and told her biggest sister who was waiting to get her to bed, “Ella, Mommy said, ‘Let’s read!’” I love that interpretation!🤣

She is super busy, always wants to be read to, to play… Her quiet alone time has reduced in length.

And my non- speaking angel?

She is hilarious. She is still happy without us. I knelt down next to her while waiting for her to be changed out of her shoes for nap time, told her I love her..and she gently pushed on my knees, showing me I must get out her room.

Her dad popped his head into her room yesterday as she stood by the door getting toys out the wardrobe. She saw him..and tried to shut him out by pushing the door closed.

They’re happy. They’re getting over a horrible cold that has kept their poor noses blocked and miserable. We adults know how frustrating it is to have a blocked but runny nose and we can sniff! They aren’t there yet.

Anyway! This was meant to be a ‘homeschool tip’ type blog so I’ll end here because my wrist is extremely sore. Stupid AS. I’ll share some more on my YT channel. It hasn’t impacted my jaw this time ! Look for @thandilocks

It’s Like Before the Mammogram

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I googled ‘uterine cancer’ (which is what the biopsies next Friday the 26th will be looking for) which took me to endometrial cancer and I have two symptoms. The inexplicable and STILL continuing main symptom despite the days of the tablets the doctor gave me to stop the flow, and the urinary symptom.

It’s like before the mammogram where there really WAS something. But like it, I am hoping it’s again, NOT cancer. I admit that for the first time, I’m really in a hurry to do the surgery. If it wasn’t for needing to be off Enbrel for two weeks, I’d have done it this week. I’m really anxious. My heart has been working harder for a while now according to my Apple watch. I also have wonky blood test results taken during my hospital trip on March 1…I want to get past this hospitalization so we can continue fighting my normal enemies. And find out if this Saturday’s blood tests -taken for today’s rheumatologist visit-show improvement. My March results were WORSE than ever! And I’d been on my Enbrel fully since January 25. So it was disheartening. My friend and I really hope it was just a blip and all is improved again. To have abnormal numbers that had been fine before, and numbers that have gone way worse than the bad they’d been…)

I was really touched by the sensitivity shown by a friend whose baby died in 2016. It was how he stated that he can’t get over the grief but his wife was “hit harder (obviously.)” It’s that understanding that I love. He gets it but is real about his own grief. His sensitivity is not common. I have seen some men not understanding that it does “hit” mothers of deceased children differently.

On that note. It’s also interesting how his wife is just in shock and horror over everything going on in my life. When I compare my lot with their… Her husband was our groomsman at our wedding so got lots of time to know my family and my in laws too, as one took photos on our wedding day. So I gave them a crash course in everything that has occurred in my life. Kinda. She was horrified. She-who went through the worst grief imaginable- also, like a friend of mine, feels like all of this is too much. The lack of support from family, the challenging family life here at home, the lack of help when our dear helper isn’t here, the unkind acts committed despite how kind an selfless I try to be, my declining health..and she doesn’t know about my upcoming surgery… She said it was as if the devil is trying to just get me down so he’s throwing every single thing he can at me and it’s too much, she wants to pray for things to ease up on me despite how I seem to be accepting of the crosses I bear.🥹

Speaking of crosses. I was wondering if our creator of this magnificent art installation😉will ever be potty trained or if she will remain in diapers forever.

Her dad then told me about a colleague who has a friend with a 16 year old autistic son. He is also non-speaking, not potty trained and cannot walk. Or does not walk. The positive is that he CAN manage school, so his mom gets a bit of a mental break, but sadly, school has brought no gains whatsoever for him. For my husband, it would be worse if our angel was in a wheelchair. I guess so. But I wouldn’t mind if she could find a school TOO! 😉 And I’m mean all of the little four, not just her.😅

She does repeat things she’s heard on video. And randomly shouts out animal names. Or names the foods she wants. And after prayer time on Friday, she suddenly said, “Wow… It’s time to pray.”🤣🤣🤣 I’m telling you, she’s trying to construct her own sentences that she’s not heard before! Good first start!

This girl who was nervous and scared of people… We have cleaning help three days a week. And yesterday was her day to come in. While I was sorting laundry, she told me that she’s found our girl not eating so she offered to feed her. Our girl took one mouthful and decided that was enough… But she did tell aunty, “Good job!”😂😂😂😂❤️❤️

We celebrate every word. It’s hard won. And still not consistent. It’s not like the list of words we hear is growing each day. What she said yesterday will still not be heard again for months if ever-unless it’s a request for food.

This video made me smile. Just seeing the hug and the held hand…It calmed my fears. The day I go for a consultation -at a not very close by hospital- to discuss my elbow surgery is the day both teens will be writing a Business exam. (I feel I’m ready to go write their Business paper myself because they’re both doing it so I’m marking double the number of Computer Science and Biology papers!! So! much! marking! My SI joints do NOT approve of the strain we are putting on them with our school work! I need a huge raise!) My husband will try work from home as he will be in the country that day, but these four need mega watching cos they scatter all over the place and they don’t have a sense of danger, so now that we know our angel is ok with her, I know she won’t cry and run away when it’s diaper change time.

And that..is a relief.

She got into the floor and lay on her tummy…She usually does that when shows or socks are different to her norm and she thinks it’s cool.

I love the energy and activity. So yes, no school for me, no hearing her say, “Mommy” but also, thankful for the ability to move. I don’t know if the young autistic teen is frustrated that he can’t walk, but I think as a mom, I’d be sadder on his behalf. And it must make toileting and bathing more difficult.😔With my bad bones, it would be torture. I can’t even change her diaper without worsening my pain. So yes, I’m thankful for her walking and running and spinning.

My Children

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Teens are interesting. And teens don’t want me saying too much about them, so I can’t. But suffice to say, they are..alive, stereotypically teen- like😅, very helpful, and battling off the ‘cold’ I gave them. Thankfully my teen son didn’t get it in his chest.

The other day I had to laugh. I was trying to rest- remembering the GP who reprimanded me last time for not staying in bed and resting when I had the chest infection. Next thing I hear, my teen son, “No, no! Mommy needs to rest!”

My talkative twin was having none of it. At the top of her very cheerful voice, she was shouting, “Mommy, are you sick!! You sick!??” As if she’s asking, “Mommy, did you see my surprise!?”🤣

In a lower tone, her not very talkative twin sister was doing her version of yelling and saying, “Knock knock! Knock knock!”

How could I ever keep them out? So I yelled-coughed that they could come in. At least my not so talkative angel came and looked at my face, pretended to climb onto the bed then decided I was boring and started playing around my room. My other one…She waved at me and just went straight for my exercise gear, a puppet and my dumbbells and started playing with them. Didn’t even come close to me!😅 They were prancing about and oh so energetic!

All they wanted was my presence.

Friday afternoon, Reo, my not very talkative angel, refused to go for a walk. So she stayed behind. Loved how she was playing with her siblings who stayed behind with her. She was just so HAPPY! And I loved how she recruited her siblings. She was playing with them!

Presence. Peace. Happiness. These are the lovely moments of my parenting life. When my children are regulated and happy.

Dear Caregiver of a Newly Diagnosed Autistic

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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.

Just a Bit

Grace by any other name1 Comment

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.

Presume Incompetence

Grace by any other name2 Comments

There’s an understandable saying in the autism world, that we should always presume competence. Which makes sense most of the time. It’s usually said by those who are speaking on non- speaking autistics. Just because they can’t talk doesn’t mean they can’t think. It doesn’t mean they’re stupid.

But…I don’t know that I agree with it being presumed all the time. Yes, presume understanding and comprehension and do talk to my child. But don’t assume they understand what you are saying. I just want you to acknowledge them. When I was looking for a helper, one woman came and walked behind my child like she was a piece of furniture. If she was standing there, she gently moved her so she could get round. Yet with my speaking children, she would ask to pass. Even if I had the money, she wouldn’t be here, that’s for sure. If I need to TELL you to treat my child like they’re a human, it’s too late.

But there’s the other side which I could totally relate to in a father who wrote about how it was better when his son didn’t say anything. People then could understand when he did things that didn’t make sense. But as soon as he was echoing lines he’d heard from shows, lines that were full sentences and therefore made sense, strangers assumed that because he ‘could talk,’ he could also act as typical children would. Like..he wouldn’t throw a huge tantrum because he has to wait in line. Generally, (if people aren’t dumb), they offer more grace if it’s obvious to them that the child is neurodivergent. And I’ve seen it in doctors’ rooms too. I actually am very ok when she makes her unusual noises. Any other unusual behaviour is then viewed in light of everyone already knowing “she’s got challenges.” They know the problem lies within, not without. It’s in her brain, not in my parenting. They’ll know the child can’t control their emotions as well as a neurotypical child can and give allowance for that.

There are more smiles from strangers when she’s making unusual sounds than when she’s crying. Nobody asks, “What’s wrong?” when she is vocalising. But when she’s crying and screaming, everybody asks why…

Today, I had another reason to prefer that people presume incompetence. Cos otherwise they look daft. My autistic child isn’t going to be the same as another’s autistic child. The skills that one has are skills my one might not have. Thing is when someone complained about their neurotypical children – as they do 90% of their time- I sent a video of my screamer. The session was 25 minutes long. I wanted to show how I don’t barge suddenly into their life just to complain about my children’s behaviour. I wanted to point out that it would be a better problem to have if I had a choice between disobedient, talking children and a non talking, extremely puzzling child.

Her response included telling ME , Mother Autism Veteran, that one family she saw in a video use photos to ask the child what they want and the child would then nod or shake her head

You don’t say!! Why did I never think of that? Why not ask me if MY particular angel CAN focus on photo’s and learn what they mean? Why not ask if there’s any communication possible besides pulling me, screaming? Why presume she’s capable of not only attending to the photo and knowing what it means, but that she will then NOD or shake her head depending on whether it’s what she wants or not? Thats actually quite a big leap. I’d be so so happy if she could indicate a yes or no. I’m happy THOSE people have found a way their child is able to use for communication. But mine can’t. Ask. Don’t assume.

And who said that what my child wants is even possible? Or safe? What if she is screaming (in the videos) because she wants to throw cardboard box with wooden toys in it, into a pool of water and I’ve said no? Then what? The ability to nod will not stop her from hating the word “No.” No picture will stop her screaming for 20 more minutes and trying over and over again to get me to balance a bottle of water on an upright pen.

I truly dislike unsolicited advice. If I haven’t asked for tips, it’s because I don’t want any. If I haven’t asked for a Bible verse to ‘comfort’ me, it’s because I don’t find comfort in Bible verses. The Bible is an educational tool for me. Something to encourage my growth, not to make me feel like things are better- except for giving me the hope of a better destiny. Not unless there’s a specific verse that promises that my angel will one day stop crying and screaming and will most definitely speak or type or write. Nothing else, NOTHING else in the Bible will make anything I’m going through FEEL better. It won’t reduce the strain, stress and anxiety. And I mean those in the most psychological and textbook form possible. I live those as soon as I open my eyes in the morning. “Oh no. Another day, another three or four tantrums over wanting to eat all day or wanting to dump cardboard into the pool.” And the rest of life isn’t on pause while all this plays out. I’m still the teacher. Cook. Cleaner. Therapist.

I’ll put some video (audio) up on my YouTube version of this post to illustrate. And seriously, if you lived it every day, many times a day, you’d also want to tear your hair out if someone were to make a suggestion that implies you have not thought deeply about your problems nor tried to solve them.