autism mom – They said I should write a book

I’ll start with unloving mothering before I go into special needs mothering. Readers know the two posts I typed about the missing Joshlin Smith. Her life imprisonment sentence even made it into international papers so I won’t go into that except to say that I wish we could get the TRUTH out of her so everyone who loved Joshlin could hold a memorial service for her. (You can tell what condition I feel she’s in.)

I saw today that a mother reported her two year old as missing but it was quickly found that she had sold the child for R75 000 to a witch doctor. The witch doctor has been found and has shown police where he buried the little one.

AGAIN?? Just like Joshlin but for a much higher ‘price.’ But at least this time her little bones have been found and so has the evil witch doctor who practices death and darkness.. and that’s where I’ll stop.

It’s when you see things like this that you realise how perhaps loving your children isn’t normal. I know that most parents in my ADHD groups have yelled, hit, sworn at their children for doing things mine do. I’ve never done any of that. So hey, I can’t be too terrible a mom. I have not sold my child nor do I angrily scold them no matter what they do.

It is heartbreaking that while I stress that our twin is hardly eating vegetables, preferring dry cornflakes, dry pasta, noodles and grapes, some are ok with giving their children to a killer. Clearly like Joshlin who was neglected and abused, this little one also must have not been loved even while in mommy’s care. It beggars belief. The wrong people keep falling pregnant.

And unlike stereotypical African society, I’m not ashamed of them nor their challenges either. God has a plan to fulfill through them and my job is to ensure I allow Him to work.

So, we move onto our special needs parenting wins. I became weary of telling my teens to TALK to their last born sister. Just because she doesn’t answer doesn’t mean she can’t hear. And just because she’s intellectually impaired doesn’t mean she’s deaf, mute and blind. She is easier to reach than the great (though unlike our kids) neurotypical Hellen Keller. But they didn’t. So I’ve carried the torch alone. Naming things over and over. Naming what she pulls my hand for. Naming anything we come across.

And this week, she asked for one of the things I always name which she had never said before. “Cornflakes.” She said it verbally. First time she’s said the word cornflakes!

Same with popcorn. I made up a video for the word “questions,” and one segment included me asking, “Who ate all the popcorn?” And then I show a video of her eating popcorn. She stopped pulling me to look at the TV screen and repeated another word she’d not said before, “popcorn.”

I am so grateful that I experience little moments of knowing she is taking in what I’m saying. Well, at least she’s clearly taking in the names of things and people.

Another victory is water. She isn’t into water, but her twin is now finally drinking plain water. With her non-speaking twin, I have an eighth of the cup filled with fruit concentrate and the seven eights made up of water. So it was awesome that a while ago, little miss in the photo above drank a cup of water and sometimes asks to drink the entire cup of water I give her to swallow her tablets with. (Hoping that makes sense!)

Another victory for the other three is SPINACH! They don’t like the texture so I chopped up potatoes that I didn’t peel, boiled and mashed them with spinach, a touch of garlic and turmeric.

They finished it all! I was pleased. It’s a struggle getting veg based iron into them. And as for little miss, basically impossible. She likes smoothies though, this one was blueberry smoothie. Maybe I’ll add spinach leaves so they all get good quality iron besides the supplements they’re on .

Held prisoner by his non speaking sister.

There’s a lot I could say about motherhood and homeschooling but I’ll end with this because I recorded a vlog that I haven’t edited etc so much would be repetitive if you are subscribed to my channel. SnapType Pro has allowed my son to ‘write’ numbers and letters we couldn’t decipher before. I first bought it for our ten year old and then another for our son. Well worth it. You take a picture of the page you need to fill in or write on and then you type the answers in the blank spaces. It’s made school less stressful.

I’m thankful that my six children are happy, loved and safe. I wish all were guaranteed that. Safety, thoughtfulness, and true love.

Until that day comes when only Love will reign, I will try advocate, answer about how I parent without the yelling, and pray for our children. Their mothers are letting them down. May all loving mothers I know keep on keeping on. Jesus said the angels are always telling the Father about what’s being done to His children. They are special. Strength and patience to parents of neurodivergent and neurotypical children. We have to do this. We have to love. Maybe our love will overshadow the love other bad things going on and we will be our own personal feel good stories.

I shared the above this morning in the SOP Reading Club that Claremont SDA Church has formed. I hope it will be a blessing to anyone else out there. A blessing and an encouragement.

Jesus was never cold and unapproachable. The afflicted often broke in upon His retreat when He needed refreshment and rest, but He had a kind look and an encouraging word for all. 4T 488.1

Good morning🙏🏾

This reminded me of the patience mothers also ought to have. I recall from
AH how “frequently the call of mother, mother is heard…” and the mom has to stop whatever she’s doing and patiently and kindly be interested in what interests the child or care about their little woes even if in mom’s mind, it’s nothing.

This is so hard especially when sick. Like the disciples, I’ve even heard my older children telling my one twin 4 year old daughter to not come when I’m resting, but she will insist, “I need to see Mommy! I want to talk to her.”❤️🥹So I often yell out that it’s ok, she can come into my bed.

When I told my children that my recent appointment proved that my pain was truly increasing as things were getting worse, my 17 year old exclaimed, “But you’re always so cheerful! I didn’t know!
Mom, you really don’t need to force yourself. It’s ok to rest more and to not be so happy.”😅

That’s what matters most. That THEY feel seen, loved, cared for and secure. I want them to see the Saviour’s love through me.

I will apply that to whatever we are involved in and in whatever sphere we are in. May we ever be patient and warm as opposed to “cold.” Welcoming even when we need “refreshment and rest.” May our “they” that is watching us see Christ’s love and patience through us.

Yesterday was awful. I am usually awake by around 5am to study God’s word-on weekends. And during the week it’s 4am. (Mainly because my husband wakes at 4am so he can also do his study before going out to run before work.) It gives me time to try get the stiffness out my bones so I can exercise a bit.

So, I woke up. I couldn’t shake the pain and stiffness. 6:20am I was out the bedroom and moving but still, the stiffness and heavy pain persisted. You know how AS includes swollen bone marrow? It’s as if every single bone in my body was struggling with it, not just my pelvic bones. (Maybe they were! I just only have had MRI on my pelvis and that’s where we know for sure my bone marrow is swollen.)

By 8am, I was struggling. I struggled to take bedding off the bed. Then I wanted to lie down. On the unmade bed. I didn’t have strength. I am now always using the little ones to at least put the laundry into the washer for me- I did two loads yesterday/ usually I do three. We are eight! We have a lot of dirty clothes especially when there are ADHD girls who soil their clothes daily. Badly soiled. Who forget to wear the T- shirt they put paint on that I now keep as their ‘eating top’ so their clothes don’t get food on them. My poor nine year old eats like she needs a huge bib. But I’m too busy to remind her at mealtimes to put it on before she starts eating.

I did go grocery but there too, I struggled. I had to lean against the till behind me. My word, yesterday was horrendous and I’m still unable to bear weight on the worst leg even now at 5:16am. The pain was indescribable. Just folding four pieces of dry laundry killed my shoulders too. I wanted to weep. What is the point in being alive if I can’t do much?

I’m SLOWLY tightening my nine year old’s locs. I just can’t stand long and the fatigue is all encompassing. So, there I was in the evening standing doing her hair before evening worship. I’m in the left bottom corner of the security camera.

I was weeping silently. Before this, we’d been listening to One Voice singing I Can Only Imagine. It was already emotional. Just to imagine myself able to RUN to God, able to kneel at His feet without pain, imagining all of us in the family-me and the children-made whole…

See, I’d made my for old pictured at the top of this post, cry. Like her twin who’s hated us touching her hair forever, she’s now also not into her hair being washed. But it has been too long. I started preparing her last week for a b hair wash. She kept refusing. My teens had said they’d do the hair so I don’t hurt myself. Except my poor angel was too stressed and was crying and her sister just couldn’t do it. I went into the bathroom, told her I was just going to wash her hair with plain water, it had been too long, and just water, no shampoo THEN water. (Hey, anything is better than nothing.) The tears rolled down her face. We have those little rim cap things that ostensibly prevent water flowing into their faces (doesn’t really do that very well but it’s better than nothing) I asked her sister to hold the face cloth over under the rim of the cap thing so no water rolled down into her eyes and just ran as much water as I could over her hair, squeezing out and scrubbing the scalp as much as possible. But the tears came. “Mommy, why are you doing that. Please stop, Mommy.” It was awful! I felt so sad for her.

I could not wash her twin’s. I was in too much pain by then. So the teens will do it in batches-mostly really just using a very wet cloth and shampoo for her because she’s even lied about to handle her hair being touched,

It was a combination of pain, heartache and hope that led to my secret tears as we watched. I truly needed to feel raised because I was down. It was emotional, watching my not very talkative angel standing mostly still sound while the songs were playing. She too feels the emotion in the songs so doesn’t do her usual racing around.

I watched videos of dads talking about their autistic children, the dreams they had that they’ll never be able to fulfill. Playing with their children, playing ball…It was truly cathartic to cry as they too wept. I get my support and validation off my feelings from the emotions other parents are feeling that mirror my own. The suffering when the world hurts the child- light, noise, people, whatever… It’s a terrible worry, not being able to make life easier for them.

And so, I wept.

Usually I go hide in my room at prayer time as sitting with everyone during worship calls my daughter to come sit on me which strains my bones. Add the womb pain and I definitely haven’t gone to pray in the evenings. But every evening, she’d come running anyway, insisting that she has to talk to me.😅So I decided to stay so she doesn’t feel the need to burst into my room. It worked. She got her fill of me and didn’t follow me into the room.

And my heart! She kept trying to sit staring at my face while hugging me with one arm around my neck. It felt kinda weird too, being stared at while singing!😝But it just showed me that yes, I’m unable to do as much as I would have liked, yes I had even googled to see if anyone had ever done assisted euthanasia due to AS suffering (found one in Canada) but I couldn’t leave this world yet to rest even if I wanted to. So I took a photo.

My children need me in whatever state I’m in. I hope we can all have the energy to bear our children while sick. To love them when we too need loving and nurturing. She doesn’t care that I didn’t finish putting her clothes in her wardrobe, that I didn’t finish ironing her underwear. (We have spiders on the washing line. Almost everything gets ironed. More so after Ammy’s terrible hospital admission due to an infected spider bite) She just wants me. And I’m here. That’s all she needs. And so while I wait for release from this suffering, I wait knowing my children would prefer it that way anyway. Waiting. Not yet released….

Tag: autism mom

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