The Bitter and the Sweet

It’s not the same for everybody. It’s like IBS. My IBS won’t be the same as your IBS. What triggers my flare up won’t necessarily trigger yours. That’s how autism is. My children are great examples of that. Three very different manifestations yet I knew even before professional diagnosis that each was autistic.

The bitter. Hair. She cries if she even sees detangler merely pointed in her direction. A hand wanting to stroke her hair sees her flinch. And shampooing and trying to detangle means screams and cries.

So I leave it.

I’ve seen White mom’s posts with pictures of their children’s knotted up hair. Afro hair is the queen of matting and pain. So now what? It’s matted up, I’m not allowed to even touch it. I did begin locs on it but she wouldn’t let me tighten them.

When she started constantly scratching her head, I got nervous. What if her matted hair is uncomfortable? Plus, to the outsider, it’s as if we don’t care about her hair. So out came the shears this week.

And out came the most bitter screams and tears and mucus and sweats and shakes. It was horrific. Her dad kept telling her it would be over soon, but my poor child was inconsolable. Micaiah was sensitive but he’s ok. By this age, age the, he was ok with hair cut. This was way worse than what he used to go through. I didn’t know whether to run away and block my ears, or leave the kitchen and go comfort her. But I was also scared she’d want me to ‘rescue’ her from the discomfort, which would be harder on her because I wanted the hair cut to be completed and I didn’t want her to feel I didn’t care.

I went in anyway. she was in a terrible state and my heart just broke for her. These are the traits I wish I could get rid of for her sake.

I found a post by a barber who was cutting an autistic boy’s hair. He too cried and cried and at one point couldn’t take is any longer and jumped from the chair into her arms. 😭 Later, the cutting-and the crying-continued, and she too wept. As she said, “You don’t know what SOME parents go through..”

It was by far the worst moment of the week. That’s the bitter of autism for some of our children. I don’t know what happens with this when they grow up and are adults. I just know that the one boy is five years older than my child and still acts tortured. Which means we have many more years to go. As I described it to my chronic pain friend, she too said she was weeping as she read the description.

This is our Autism reality for one of our autistic children. And I know it’s the reality for others out there too. All I can say is, “I share your heartache. I hate it. I hate that there’s a bitter.”

And the sweet…

In some AAC groups (Augmentative and Alternative Communication) groups, the concern either from a very ignorant professional, or a desperate mom, is that if they teach their non-speaking child a different form of communication, they’ll never be inclined to learn to speak.

Now, considering I’ve read how speech impacts some adult autistics, or how they WANT to but CAN’T, I’m not into forcing speech anyway, I just want communication. So, American Sign Language… It has brought out more spoken words, not less. She looked at me at the start of the week when I said mama and repeated the word verbally while signing. When I sang the line, “I love Him more and more” to her, she said and signed, “more.” It’s as if signing ‘makes’ her speak more. I came across an article stating the same thing. That for many non-speakers, alternative communication actually helped them use speech faster than those who weren’t given an alternative method.

It’s worth it, mom. The hope is speech. But what if it never happens? Isn’t it better to start some form of communication than to have none at all? Let’s not force our children into boxes not meant for them. Let’s help them thrive and give them support to be who they are as happily as possible, not what we want them to be while depriving them of the option of communicating. And yes, there are some adult autistics who never learned to use any form of communication that we can understand. Not even physical gestures like mine does. And so, I know that even AAC won’t help.

I’m sorry. And I’m sensitive to that. But I won’t not rejoice over each word I hear from my daughter’s mouth. Nor each sign I see from her chubby little hand.

It’s the sweet.

Re-Posting

As previously stated, I had deleted some posts, and then kept others as drafts… I’m not sure how they will appear as time passes and I re-post them, I suppose I could view my blog…

Alright, that answers that question. It’s all higgledy-piggledy now. The order is different. And it’s posting as if all were written today. So, what I will do is post a few and then just start afresh. Sorry for that. Hopefully the brand new reader who joined only this week will get a sense of who I am as I go alomg. If you want a password to my private posts, leave a comment. Sorry for the multiple notifications those who are signed up will have received as I removed the old posts from drafts.

I had wanted to share my heartache and also my little happy moment regarding my youngest autistic child. I think you can find out more about who I am in the ‘About Me’ section. But long story short, I started THIS blog because my husband told me to. I don’t know why because he doesn’t read, but he seems to think I have something to share, so back I am. I used to be on blogger and began by sharing what it’s like following American natural hair bloggers while living in South Africa, and then in Tanzania where we did mission work for a short time.

I have six children. The seventh is one we will never afford but had wanted to bring into our family. While in the process of adopting for the second time, an older foster child commented that she understood that hectic medical challenges like hers are scary (She needed 24/7 oxygen and was in a wheelchair) but that we potential adoptive parents should not give up on older, and unwell children like her, as she too longed for a family.

While pregnant with the twins, I told my husband how though it was now six years after this plea, it still haunted me. I wanted to be the answer to an older child’s prayer.

Unfortunately, support services for children like mine are too expensive. We can’t afford a seventh child. For the sake of the newcomers, we are currently assessing out eldest for what used to be called Asperger, we have one son age seven who we adopted at four months old and who I realized was autistic when he was six months old (Formally diagnosed at age three) and a soon to be eight year old adopted daughter with a known and very complicated prenatal history who has ADHD and other issues that complicate her life. Our seven year old son also has ADHD and other challenges too besides one psychologist also thinking we have FASD to attach to his impressive list of acronyms. Our three year old is the biggest star of this blog mainly because she is the youngest and you know how the baby of the famiky always gets the,ost attention… no, that’s not why. She gets a lot of posts dedicated to her because she is further removed from what a home school mother expects when giving birth and planning on educating her children. The whole “cuddles and talking and hugs and too many questions being asked” thing we expect as they grow.

Her twin is a talkative and affectionate three year old. She is an energetic sensory seeker (Loves ice Lillie, crunchy foods, running and bashing into the sofa) who wants to eat way more often than her body needs. And she does not speak in order to communicate a need or feeling. She uses body language. While her twin raises my sleeve, looks at y post op dressing on my arm and says, “Mommy fell down. Mommy has an owie… I’m sorry, Mommy,” my autistic three year old has never spoken a sentence nor a phrase with Mommy in it. That’s when we started realizing she had stopped things she had been doing. Eye contact, calling me and her dad, saying good night, counting, laughing…All that stopped at around 18 months and by 24 months I’d booked an appointment to confirm what we knew. Another child who is autistic and has a delay. But also not speaking, unlike,y now seven year old who does speak.

And that, is where we will begin. Hair. Tomorrow. That’s the heartache I wanted to share.

Tomorrow.

Hint. She is NOT a fan of her hair being touched. I saw a post by a mom on some American community page offering to pay anyone willing, $100 to cut her autistic son’s hair despite his crying while it’s being done.

Inappropriate Play?

I saw a post by autistic adult who was saying how she doesn’t like that lining things up is referred to as “inappropriate play.” Now, I’ve seen it referred to as one of the signs, but I thought inappropriate play was things like my girl preferring to piece up stones and walk around with them then dump on the floor for me to stand on. The inappropriate part being me falling victim to the stones! I think maybe I’m naive. I viewed that as quirky and cute.

Lining up? Or stacking things up to make a tower of food or toys like my girl? Lining shoes and cars up like my son did? I thought it was CUTE! And it helped me add to my “I know my son/daughter is autistic, what do you think, Dr Professional Whose Diagnosis We Need Because Though We Know It, Nobody Will Take Us Seriously Until YOU Confirm It.”

It’s not inappropriate at all. This pathologises a lot of people. It’s saying that the lining up and/stacking up needs to be corrected and stopped. No way! That’s a form of order! My boy would line up all his shoes and his brothers shoes and add his cars in the row. It was AWESOME! And we knew exactly where all the shoes were. It’s a win! Why would I have wanted to change that?

Nah. Some labels are off. I just saw one article saying that playing with only one part of a toy is inappropriate. Or manipulating it in a way it was not designed… My son’s spinning of car wheels instead of pushing them along the floor is viewed as inappropriate. I view it as different or unusual. I never thought to stop him, reward him with something edible, as suggested in the article if he copies me and pushes the car along floor. As long as he is happy, not hurting anyone and is not breaking the toy, what he does will be appropriate. And that is that!

Not all autistic behaviours are negative.

Do You Want a Glimpse?

I think it was 2017 when I came across a post in a homeschool group about two families that were going to be going around the country interviewing homeschool families. They mentioned some of the stops that they’d be making but nothing jumped out at me to make me follow their page.

A while after this, when my poor children were unwell, I saw a post saying they’d be in Somerset West (I think it would be the very next day) and would love to meet and possibly include families from the Western Cape who homeschool. Now, here’s the thing. There are politicians who believe that all homeschool families are White Afrikaners and racist and want to remove their children from schools. After all, this IS Africa and especially in the other provinces, Africans make up a huge majority of the country and *gasp* some Africans are present even in the ‘good schools,’ as we call them. Yes, obviously some are indeed racist. And some do do a lot of complaining about the current government, forgetting that for most of us, this is miles better than the separation, oppression, forced removals and township life, and hatred and fear and death that permeated the very fabric of our lives.

But others are just like me. We just want to be the ones who raise our children, who spend significant time with them. So, I decided to ask them if I could attend on my own as my children weren’t well. I wanted the naysayers (Who probably won’t watch it but hey🤷🏽‍♀️) to know that there ARE Black people who have chosen home education. That was my sole motive. To add my colour to the few others of my colour who might appear in the documentary.

They said yes.

It came out on Vimeo a few months ago. It’s about R260 to buy. $15. It’s simply called ‘Home Ed Documentary’ – based here in South Africa. I enjoyed seeing the different types of families we have. I was intrigued by the adoptive family and our similar lives… You might catch a glimpse of me when I only had four children.😉

My Heart

Twin B, Oreratile, Ratie..Rio… My youngest autistic. She’s slowed down on the singing. She makes more unusual noises instead. And she is generally so happy. Except when she’s not. He he. She will still pull you by the hand when she wants something, taking you to the cupboard where the object is and you must guess what it is that she’s after. She’s been obsessed with her big brother. Nobody else. If she’s screaming and crying and he’s carrying her, if I try take her, she goes right back to him- still screaming and crying.

Well, she did for two years. Now she’s also into her sister, Amarissa. She goes to her and takes her hand too. She follows her and I’m PRETTY sure I heard her say, Ammy” the other day. Just that her enunciation isn’t very precise so I can’t say. But yes, she now has chosen a second ‘friend,’ Which leads to interesting crying when BOTH twins want to play with her doing different things! The other day I was about to go do some reading with Ammy when Ratie motioned to her and wanted to get onto the trampoline with her.

We did our reading much later, during her nap time.

Today, she sang a song. A song that she doesn’t usually sing. There was no trigger that we could see, and she didn’t get angry when I joined in. Instead she made this little, “I’m bashful” downward movement of her head and came to where I was kneeling and hid her face on my shoulder where I promptly stole a hug. We all said, “Well done! You sang the song!”

And for the first time without us saying it, she shouted, “Yeah!! Yay!” I know it seems like nothing, but to us, it’s everything. She praised herself. She gets it. And she was proud!

I don’t know the future for my angel. I don’t even know who’s going to operate on my elbow, but I know that somehow, everything will be alright.

I am filled with so much love for all my children that it makes my heart burst. I hope I live to a very old age and get to see them all thriving.

Adoption Tears

I never knew this could ever happen. I truly didn’t. What triggered this post was a (Black) friend who’s adopting as a single mom through foster care. She met a little boy while volunteering at a children’s home and immediately knew that that would be her son. Except nobody knew if he was even adoptable. (They decide based on history. Was the child found abandoned? Or was the child handed to foster care and has family visiting?) We were told that even if it’s some random uncle who only comes once in two years, if he refuses to allow the child to be adopted, then the child languishes in care till age 18. Then they’re out on their own.

She went from jurisdiction to jurisdiction, seeking the social worker who was originally in charge of his case… Nowhere to be found! After months, her telling them she wants the little boy, they eventually assigned a social worker to liaise with the children’s home and the place where he was going. She’s taken him home now that a social worker has been assigned, has sent him to school, but he didn’t even have a birth certificate. So, yesterday she received it. His ‘first’ one. The one BEFORE he’s actually adopted and is known as her son! It was jarring. She’s named him but because it’s his ‘original’ or ‘first’ one next to mother and father, it’s blank. No mother. No father. ‘Ever.’

That broke my heart. And then there was the endorsement at the bottom. It says “informant” and the ID number. When we asked our social worker why our child’s birth certificate had an endorsement, she said it’s because a social worker (typed in as ‘Informant’) is the one who registered the baby and so because it’s not normal, they have an endorsement. It jars.

Our children deserve parents. They don’t deserve some endorsement that shows they weren’t registered by their mothers. So that too, broke my heart. Then I thought of my OTHER child’s endorsement.

OUCH!😭

We’ve kept these old birth certificates. As ugly and sad as they are, they are our children’s history.

And as I wept over this boy who is so loved by my friend that she’d fight this hard and so long only to still be at step one of the process, I thought, “What is so dark and evil in people that they would want innocent children to remain like this? Known as ‘abandoned.’ No parents. Waiting in a children’s home for parents who will never come?

As stated before, I’ve recently become estranged from an aunt because of her and my mother’s stance against adoption. I haven’t visited my mother since my aunt made it clear they were together in this. (Husband has gone once to drip off grocery, bedding and electricity.) Not sure how to handle it. I knew, but I didn’t know how bad and deep and strong the hatred of my children was. I told my mother-in-law two years ago that seeing as she wanted to act like my adoptees were nonexistent, that I too would be. So, I know how to make it clear that my children are my life and to hate them is to hate ME, their mother. But as to how to bring it up…

I asked in adoption group if anyone else had had this kind of experience. One Indian lady responded but didn’t say what excuse was given. A White mom said that for her, it was the fact that it was a Black baby that they were adopting that made her husband’s family anti adoption. It became so bad that her husband who had adopted with her (obviously), then told her either the baby must go, or he would.

She kept the baby, and husband is now an ex. Loser! And well done to her! Sad, though.

But racism…That’s always existed. I have always known we were viewed as inferior. I didn’t know that babies in general were.

A Black mom who also had biological children before adopting also responded. She has no living parents and was very close to her maternal aunt. Extremely close. Until she told her they were going to adopt. The reason the aunt gave was that she was going to bring bad genes (Ie. Bad behavior, potentially criminal) into the family. Umm, what about all the unsavory family members her family (and many I know) have? The blood is tainted anyway! And who is to assume this poor baby would be ‘messed up’ anyway?

Her aunt who claimed to be Christian but refused to see how adoption is God’s heart, eventually also withdrew her love from her. And that’s what hurts. Why is love conditional? And why is it only conditional against those who adopt? Why not against the thieves and alcoholics who are working but don’t contribute a dime while living with their aged parents, stealing their money instead?

Why are we adoptive parents doing what we all know is RIGHT, hated for doing so?

Why do they hate innocent children?

Those children deserve the world. And by hook or by crook, we will give it to them, whether our relatives want us to or not.

For us, love makes family, not shared genes.

Those innocent children come first.

I hope things change one day. I’ve told you that in general, Blacks are anti adoption. Yet the majority of abandoned children are Black.

Doomed by hateful uncultured ‘culture.’

Things have got to change. Here’s to all the women who have bucked the elders and followed their hearts. Here’s to dealing with years of heartache and pain. Here’s to raising children who will become wonderful, loving adults.

Happy Tears

Love how she’s chosen to relax❤️

Our girl never responds when we greet her. Ever. She has never said hello or bye..

Till this morning.

As I came in from taking a walk, she was with her siblings about to leave, standing by at the door. Her unfinished Sabbath treat in her bowl on their table.

She saw me and said, “Hi mommy! Hi mommy!”

I literally couldn’t believe my ears! Now I’m crying even more when I think of the post I wrote recently about her having said, “Hello, mommy,” only to awake and realise with heartache that it was just a dream! I couldn’t believe my ears! As I knelt down to make myself her height, and give her a hug, I asked my other children if I’d heard right. What if I was celebrating and it was all in my head?

She not only said it, she took my hand, led me to her chair and sat down. She babbled something none of us understood while playing with my hands. Just putting her hands over mine, smiling at me, enfolding my hand in hers… It was precious! What a Sabbath blessing!

My two and eight month old greeted me for the first time ever!

My heart is full!

Granted, she doesn’t use words consistently. It’s been months since she said mommy. And she hasn’t said her other random words she uses when NOT watching her baby videos, so I won’t expect it tomorrow, later today or next week. I’ll just keep talking and signing and loving. And will cry happy tears the next time she surprises us😊

Help!

Copied from my private Facebook post

Anyone have any ideas?

Anyone have any friends in the LSEN space?

Anyone know any active groups for overwhelmed homeschool mothers of children with special educational needs?

I took my Ammy and Mickey to an educational psychologist last year because of trouble I was having teaching them.

I felt there was MORE to it than pure ADHD, but the psychologist was super sure that (especially for Ammy. We already knew M has global developmental delay) she’d be fine once medicated. “Don’t worry about her! She’s FINE! She’ll be able to have any career she wants.”

She’s NOT fine though. An OT later scoffed at me when I told her I suspected visual processing disorder as we’d had her eyes tested by a developmental optometrist, till she happened to do a test that touched on it and realised I was right, and then assessed it for real (for free) and found..I was right.

That’s just to set background into how HARD it is for professionals to HEAR ME!

What kind of parent wants their child to be diagnosed with a diagnosis they don’t NEED!? I am with them 24/7, I live their struggle… I don’t WANT to.

Anyway, NUMBERS!!

My girl is turning eight in December and we’ve been counting for years.

She jumps from 20 to 99.

Or if I slowly coach her to 29, she jumps to 90.

Numbers are not sticking. And this is verbal. Visually, we are struggling there too, obviously.

Anyone know if there’s a label for this numeracy issue? Should I find a different psychologist to assess her?

Is it brain damage suffered in utero? And there’s no label, just a life of constant struggle? (Thankful to have her prenatal history from her birth mom.)

Reading is hard as she misses out the last part of words with prefixes . Like she’ll say jump instead of jumping. I’ll blame visual processing. But it limits ‘school’ time because I don’t want to reinforce her struggles, I don’t want her to feel like learning is about being corrected all the time.

And she WANTS to “do school.”

I’m going to order short word wholesome books for her to read (We follow Phil 4:8 which limits the kinds of books she can read from) from the States. And continue with downloading and printing visual processing worksheets and following the home programme set up by the OT.

But in the meantime, what is this NUMBERS PROBLEM!?😭 Is it also a MEMORY issue combo? Nobody with pure ADHD talks about it so… I don’t know!!

I need a name so I can find the next step. Just like I know the next step for the visual stuff…

HELP!

I was brave!

Man, those simulations of the autistic sensory experience that adult autistics have created have messed me up! I’m now super sensitive and aware of what’s out there. I always knew he was sensitive to or fearful of sound, touch, new places, but when you immerse yourself in their world and what it FEELS like, it’s different.

It breaks your heart.

Cue my intro into our first foray into the world as mom and son after having watched those videos. Thankfully, it was only to the dentist for a cleaning. But he didn’t want to go because his 7 year old sister told him that the flossing the dentist does is sore.

They didn’t floss him. Whew!

He spoke a LOT. And he made them laugh. Even when he was blatantly lying (they didn’t know it) or forgetful. Like when the dentist was going to take an x-ray and told him he’d see his skeleton. He asked, “Do skeletons come out at night? Are they scary?”

Then he told them, “I know about skeletons. Mom told me about them.”

Which is it? Scary things you’ve never seen which means they come out at night when you’re asleep? Or is it the pictures I’ve shown you of people’s skeletons?

He mentioned to the dentist as soon as he walked in, that he thought he’d be seeing a man. Ahhh, I was half embarrassed! All the dentists his siblings see are female, and so is my endodontist. But hey, he thought he’d be seeing a man. So we all apologised to him.😉 He asked the dentist, then the hygienist how old they are. Ahh, to be a child again!

There was a time when he had to keep the fluoride gel in his mouth for three minutes that cracked me up. About 30 seconds in, he put up one finger to signal that there was only one minute left. After one minute, he put up a zero! Had to break it to him that he still has two whole minutes to go. 😅

Then trucks went by. And his eyes went WIDE and he exclaimed with large eyes as he looked at them. He was trying to say, “Whoa!” It felt like an assault, now that I know a bit more of what sound feels like to someone who’s got auditory sensitivity like he has!

When they asked him if he’d go back every year for a cleaning, his response was. “Ummm…I don’t know… Maybe when I’m 41… Actually, when I’m 66!”

While we all laughed, he brought it down.

He will go back for a cleaning when he’s 11 years old. He’s six now. Though he told them he’s turning seven next year. (No! This year in September!🙂)

And after asking me to hold his hand as we left, he told me, “I’m going to get home and tell them I was brave.”

Yes, he was!

Homeschool Fears

EXAMS!!

My son slowed down in his primary years. Now that I know about his autistic traits, that could be why🤔Here we are, preparing for the first ever official exams and I’m terrified.

I have always had love for the ones who struggle. Even as a nine year old, I purposely befriended the one special needs girl in our class. When I had a piano recital during assembly, I asked her to play what my left hand would play so that she would feel accomplished in some way, ‘celebrated’ for a change. Years later, after befriending a refugee, My mother asked why I picked “the ones with problems” to be my friends.

Because if I don’t, who will? The refugee girl came late in our high school life. The rest of us had been together since what is now known as grade eight. This girl came in grade 11. She didn’t fit in. Her blazer was second hand and CLEARLY so. It even looked handsewn. (The second hand shop charged depending on how bad the item looked. This looked BAD. Was obviously what her breadwinner mother of four could afford.) She had bad body odour from walking long sister access to and from school. Everybody said she and another refugee stank. But by the end of the year, that had been sorted. But I had to drift away from a friend who told me, “It’s the three of us. WE are friends. Why are you inviting HER to sit with us? Why can’t she go sit in the library during break like she always does?”

Anyway, that’s not the point. The point is that I’ve always been drawn to the struggling, the friendless, the ones who need to try harder. Be it to get through school, or to get through life. And note it’s my turn. My children’s turn. And I’m scared!

They are the first I’ve ever educated. I mark their school work and except for Maths, they’re generally doing well. But will doing well translate into good exam results? I’m not sure for my son. Economics isn’t only about learning the jargon, it’s about applying the knowledge . And that’s where the struggle is. When he ‘applies,’ all the jargon, all the economic terms disappear from his mind. He answers like he’s answering an English paper. Instead of using phrases like supply and demand, he’ll say, “More people will want more of the items.” Things like that. Same problem with Business Studies and Geography. He also doesn’t answer Case Stidies well either.

Maths? No good. I’m getting both teens tutors for that once we’re done and I know all their problem concepts.

English? Oh boy. The neurologist (Who I’ve fired) mentioned an autistic teen who said he didn’t understand how he could “Describe a trip to the ocean” when he’d never been to one. She had to ask him if he’d ever read about the ocean, which he had. He then was told he could use his imagination plus what he’d read about, to describe a trip to one. Which made sense to him. But in an exam, I can’t tell my son to imagine things. To be verbose. His essays are pitifully short and he HATES writing.

I’m honestly scared.

I want them to thrive! But I am not their brain. Physics is going great. I’ll cling to that. He’s able to learn facts easily. It’s interpretation and Maths that are his bug bear. It is what it is. I’ll take it one day at a time. I’m doing MY best as teacher, using extra videos for them to learn through too.

I’m terrified. I hate that we don’t have support in the family, but detractors. We don’t have well wishers, but haters. I can’t go to them with concerns, they’ll blame homeschooling itself, or claim God is cursing us. (Hey, I did say a relative said God cursed us with twins because we adopted, right? So anything goes in their evil world.)

Here’s to exam prep. We’ve begun. Going through past English papers when I’m recovering from my surgery in two weeks’ time. And he has started revising Economics so we can go through past papers there too to see what gaps we have. And physics…He only has one chapter to go, and very few of Business Studies too.

We’re on the home stretch for international exam number one -IGCSE (aka the international O levels). Praying he does super incredibly. Not for only the sake of our detractors, but for both our sakes too. God help us!