Fired my doctor!

I don’t want to name names because the medical field is small and I don’t want to scare away competent doctors. But I also want to share how happy I feel after firing my doctor!

In the last post, I think I mentioned how frustrated I’ve been with the lack of proper and full advice regarding what I can or cannot do. It’s too late 12 days AFTER the surgery to tell me (only because I asked) that a certain action is not good, when you’ve told me all along to move my arm! How am I meant to know what “move” means in this context?

So, in the afternoon yesterday, after having felt so rushed by the doctor as I was trying to understand the parameters of what is safe and what is not that I even texted my friends that I felt teary afterwards, I thought again about the advice to, “Take it easy, don’t lift anything for six weeks but move it every now and then.”

“What about driving to my post op appointment? That involves using my arm. Would that be too much movement? Nobody said I should not drive… Does that mean it will be ok? Or will I damage something because the elbow will be moving more than ‘now and then?’”So I sent a friendly email asking if it’s advisable to drive myself if not having had pain meds, or keep using others to get me there.

I got a phone call from the receptionist. “Doctor says you must stop asking questions. He is in theatre and you must stop asking. He said you can drive, depending on how you feel, but remember, you can’t drive with only one hand, that’s not safe.”

That is LITERALLY what this woman said.

What does that even mean?? Why would I be driving one handed if it’s ok to drive? And what does depending on how I feel mean? Physically? (They themselves told me I’ll be in pain for a very long time..) Or mentally? (Feeling brave enough to drive?)

And also, what in the world!??? It’s not like I phoned the theatre or the hospital he was operating in. It’s not like I called his cellphone. I didn’t even TEXT his cellphone. It’s not like in my email I told her to go ask him that very minute. So why was she telling me he’s in theatre so I must stop asking questions?

More importantly. Who else beside the surgeon would know the best way to preserve his handiwork and keep it from getting messed up? Who else should I get advice from regarding my health and making sure nothing gets damaged other than the one who is trying to fix me?

I told friends and promptly burst into tears. You know when you have been attacked for doing what is right? The injustice hurts. The confirmation of the feeling I had had while there physically also hurt. The rudeness. The belittling and demeaning. He wasn’t providing a free service. This is my money paying. My money to get good care.

So I sent emails out to other doctors. This time I didn’t care whether they were in my medical aid network or not. I’d rather scrimp and save and pay more than my monthly medical aid payment is already taking, and get good care from someone they won’t pay, than to be abused and treated like dirt. Treated like I’m being a pest.

At the same time, we know how the medical world is. Too many patients are sue-happy. No doctor wants to work where someone else has already worked in case something goes wrong and the patient blames them.

So, in my emails, I made sure to tell them that I would not sue, I would not blame… I just wanted someone who cares about the outcome of my treatment as much as I do and would please take over my care.

This morning, I decided that instead of waiting first to hear if someone would take me on as a patient before leaving this practice, that I’d leave anyway. I checked the law out and found out I could pay for copies of my medical records if need be. And I also looked around for wound nurses in case no doctor agreed to do the dressing change and check. My wound care nurse then told me she retired this year. She was a blessing!

I told the practice via email and sms to the doctor, how I feel. I told them that not a single person I’d spoken to thought I was being ridiculous in asking the questions I’d asked, and in fact, that they were the unreasonable ones. I told how my other surgeons have always given me instructions before I even asked. And I also mentioned how my hand surgeon even set up a physiotherapist who was there the day of the operation, advising me.

Then I blocked them because I knew they would try and convince me otherwise and that I didn’t want to repeat what I’ve already said. Why would I go back where I’m treated like trash? Not anymore. I’m no beggar. They phoned my husband. Didn’t help. I refuse to engage any further. As I told them in my email, I will not be asking you any questions, just as you requested, unless it’s to ask for a copy of my medical records.” Why be asked to go back where I am not allowed to learn how to care for myself? Where they allow me to do what they turn around and say are harmful activities?

I didn’t respond.

And I waited on tenterhooks for a response from a surgeon. But also looked around for other wound nurses as I knew the chances of a doctor having pity on me were extremely low. A White 60 year old friend who had offered to drive me there and go make a fuss gave me the name and number of a wound nurse.

One surgeon responded positively! I’m pretty sure he would not have known it (My name is common) but it was the very doctor who did my hand surgery in early 2020. He is the only one gracious and brave enough to take me and help me! Not only am I grateful, but because he’s treated me before and only money kept me from using him again, I know for sure that I’ll be in good hands this time.

And of course yes. I thought of an article someone sent to me on medical gaslighting. Research not only found that women were treated worse than male patients, but that women like ME are treated the WORST. And the doctor and his office lady are as far away from being like me as possible.

Are they like with every desperate patient they have? Or just..?

I hope nobody else has to experience it whether they are like me or not. And I’m thankful, so thankful, that I have a well-qualified surgeon to take care of me -who also doesn’t look like me -in two weeks’ time. (He’s away next week and the sweet office lady made my day too. No talking down to me like I’m an imbecile. Her voice actually almost made me cry from relief and being heard.)

Whew.

If I ever need another surgery, I’m hoping it’s next year. We are changing our medical aid plan. Never again do I want to be forced to see one specific doctor because the plan only covers one doctor in a hospital they cover. From next year, I’ll be one of the extremely privileged (Guilt!) who can virtually use any hospital and any doctor, AND will have my glasses or lenses covered up to a high amount EVERY year, and will finally have psychologist, speech therapist, occupational therapist, counselor, biokineticist and a much higher percentage of our monthly chronic meds covered. Yes. It means we pay much more than we are now.😅

But if you got extra money and were in my situation, you’d also put all the extra into your and your family’s physical and mental and academic (not sure how else to describe the kind of health derived from the therapies my children will be getting) HEALTH.

Thankful for this brave and caring professor of hands. Find him at Vincent Pallotti Hospital. I may not always name and shame, but I’ll certainly praise. Especially one I know so well already.

Yes! Ooh, Mama!

Ok, firstly, my elbow is weird because the dressing is apparently making it weird. Will find out how things are truly progressing when I go for my official post op appointment next week. Secondly, I have the of the worst surgeons I have ever had when it comes to post surgical advice. My hand one had a physiotherapist there at the bed when I woke up and told me exactly what I could and could not do. This one just told me to keep moving my arm every now and then (Move it HOW? Up and down? Can I twist or not?) but to take it easy and not carry anything for 6 weeks. But only today did he tell me not to do something I’ve been doing… I tie my head coverings up with both arms. And seeing as the knot is at the back of my head, my arm bends fully. Same with washing my back in the shower. I happened to ask as he was ushering me out, if I’m allowed to bend my arm fully. He said no.

It would have been helpful to know that, don’t you think? I asked if I can do light walking workouts that don’t involve my arms. His response was, “What do YOU think that might do?”

You tell me, DOC!! If I am allowed to work my legs out but not my abs after my recent abdominal surgery, how am I supposed to know if the same principle does or does not apply for this particular surgery? He didn’t answer me. So I’ll assume even moving my legs comes under “not taking it easy.” I don’t KNOW!

But onto the happy part!! Aww man! It’s been interesting being South African but fully immersed in American autism. I asked in a South African group about sign language. Not a single person said they use it with their non-speaking children. I know people who have literally told themselves, “Ok, if he never learns to speak, then we will forever live in a world of no communication. It’s just the way it is.” The apathy is scary! And sad!

So I just did what I felt was best and have downloaded some child-friendly ASL videos for them to all watch. (American Sign Language.) My heart melted yesterday when my 7 year old daughter told me that she and her little brother have been re-watching the sign language videos that are aimed more at their age so that they can learn and also so they can teach their talking twin, who loves them with all her heart. That way, my autistic twin has more people to learn sign from. This is special! Especially given their own little struggles!

Then, my sweet son drew something, and proudly told me, “Mommy, please send this to Daddy and show him that I was struggling.” (Like struggling is a huge positive.)😊😊😊I had started posting it on T WhatsApp profile and then deleted it. He didn’t want me to delete it, so I’ll share this link on my WhatsApp for his sake.

For your pleasure, my happy son’s struggle. Drawing me!

But the cherry on top! Twice now when the teens have gone during nap time or bedtime to check on my noisy non-speaking twin for whom we are all learning ASL, she’s done the sign for ‘Mama’ and ‘potty.’ And said the words verbally as she signed!!!

Now, I’m not saying she will suddenly come out with, “I want mommy” in sign language, but this is huge! She hadn’t spoken any words when they went to change her. And now here she is, speaking and signing! The signing is doing its work. And for all we know, maybe she is saying I keep telling them that they need to start potty training when summer starts but she’s not interested in what mama is saying. 😀🤷🏽‍♀️

Also by the way, look at how much better she already is! Nose still obviously affected badly based on how often she rubs it, but she has finally managed a smile. Something she hadn’t done in ages.

My ‘sign language practicing, healing from peri orbital cellulitis’ angel! God help us. May this be the tool that will help her share her thoughts and world with us.🙏🏾 And if not, there will be no apathy here. We will try to open up her world as much as we can with what we have here in South Africa.

So help me God.

The Little Boy

Thankfully, winter means I wake up before the younger children. So I have time to relax my mind… But yesterday morning my mind was anything BUT relaxed. In fact, I’d even told someone that I didn’t feel like blogging because everything just feels so heavy, and who wants to write when all people will find is more heaviness?

Little did I know how the day would proceed. When my son got Twin B up, he yelled for me to go see her face. Now for a week or so, she’s had some swelling around her eye that goes down during the day. Mild swelling. And she has been rubbing her nose. We’d thought it was her allergies, and the night before is told her dad that I didn’t think her allergies were under control so when I can drive again, I’d take her to a doctor.

The doctor came much sooner after I saw her face. 😭

The swelling was more pronounced and now shutting her eye a bit. I panicked and phoned her dad, who was just arriving at work and said he wouldn’t be able to shift his meetings to take us to the doctor.

So, Uber and my son it would be. Just the thought of that stressed me even more. My son has a very gentle heart. He can never ‘force’ even necessary meds and cringes if he has to hold her while I treat her in some way. How would he manage her at the doctor’s as she moves away and screams and cries? She did that when the neurologist was merely looking inside her ears and checking her muscle tone. She wouldn’t open her mouth when her dad took her to get her gum looked at. But I had no choice. I made up an appointment with a doctor I’d never seen before, as mine were fully booked already.

I put her favourite snacks together (dried cranberries and peanuts and raisins)!and added a book and washable marker. I was truly disappointed that her dad wasn’t going to come. But at the same time I thought maybe I was over reacting. I just felt SCARED though! The person who I said everything felt heavy to was also scared, which didn’t help at all! It was actually one of the few tunes her reaction matched the point I was trying to get across. And it was just sending this photo of my poor baby just as she’d woken up. All I added was something like, “She woke up like this. I need to take her to the doctor.”

I organised an Uber ride soon after her dad phoned, asked what time her appointment was, and said he’d try make it. But then was far away, or so we thought.

He made it way before the appointment happened. Waiting room full of coughing people. Our busy runner… long waits… It was horrible. My elbow was sore as I hadn’t eaten and so hasn’t taken my pain tablets. And she insisted on sitting on me and dropping raisins on purpose! And trying to run away with me. Cute! But not the best time! It took ages to be called in, as always. Which is why I’d moved from that centre to a different one, but hey, I was desperate and they had an early slot. I needed to know, and I needed them to see it before it invariably went ‘down’ a bit as it had been on previous days. Though it had never been this bad before.

I was half scared we’d be told it is just allergies. But figured that at least we’d be given better medication anyway.

Nope. Phrases from the doctor such as, “If it was in her eye, she’d be in hospital right away. But thankfully it’s only around the eye…” and “I’m actually almost tempted to give her double the recommended anti antibiotic dose, that’s how serious it is.” And the bloody nose we thought she’d had? “Yes, it has spread into her nose.”

We left with a diagnosis of periorbital cellulitis, script for antibiotics, anti inflammatory and a different allergy medication. And told that if we think she’d not healing fast enough, to phone again for more antibiotics. How am I meant to know his fast is fast enough??? I had never even heard of this type of cellulitis before, only the type you can get on your leg or arm… We were also told to double dose her at first. And still fit in the other two doses in the remaining few hours of the day.

And that’s where the little boy comes in. Husband dropped me off at the pharmacy then took the children home. As I joined the dispensary queue, there was a little boy lying on the bench, boots on the floor. Both parents there. Then they were called up to the window, and the person between them and I was also called to her window.

The boy stayed stretched out on the bench. Then sat up, kept poking his ears which both had button wool inside them. Must be a terrible infection! And then I noticed his extremely red eye as if a blood vessel had burst. That combined with his trying to be brave and not cry when he was in such obvious pain undid me. (He was probably age eight.) I cried. I hate seeing children suffering. He broke my heart! I got closer to him, rubbed his leg, rubbed his back, asked if he was in pain. He said yes. I rubbed his arm, asking his name. And all I could do was tell him I’m sad he’s so sick and I’d pray for him. His dad came over and I repeated what I said. I felt so helpless.

They didn’t have the antibiotic we needed when it was finally my turn. I had to call my poor husband who was parked outside and tell him he couldn’t take me home and rush for his meeting. Or, he could, and I’d take an Uber to a branch further away that had the antibiotic. He tried phoning a different pharmacy in the mall I was in, but they didn’t have it either- a penicillin called Macropen S. And we needed it.

He asked his PA to move more meetings, missed one, and signed on remotely onto another one while I waited in the queue.

Thankfully there were no little children to make me cry again. Just more coughing! They’re making me paranoid! I’ll join the few who still wear masks! I still feel ‘germy’ today!

The eye was very weepy later in the day, which scared me. And she shuddered at the taste, which meant we lost half the dose and had to try again. Thereafter, she ran away, crying and screaming when she saw that medication coming. It was horrendous! Both her pitiful reaction and the actual antibiotic. I’d also want to run away!

I asked my friend who has paeditrician friends for tips in how to mask the taste, or if there’s a different antibiotic she could take as I was scared of us losing more through her reflex shuddering or perhaps next time through a total refusal to swallow. Even the most recent dose, her brother had to make her lie down in his arms while she tried in vain to turn her head away. It was terrible for us too. She doesn’t understand how desperately she needs it, why we are forcing her…

Instead, the paeditricians scared me even more! She sent me a screenshot of their group chat. One said she shouldn’t even be on penicillin but rather augmentin. And in fact, she’d have preferred her to be admitted to hospital and have IV antibiotics. More so knowing how we’re struggling to get the meds into her.

The other one agreed, saying she too would have admitted her into hospital as this cellulitis is dangerous. (I’d already googled what happens if it spreads or isn’t treated. It’s not good at all. Death is a possibility.) Her recommendation was for my friend to tell me to phone my doctor today and relate our struggles and hopefully go into hospital.

Yeah. You can imagine how THAT went down! Thankfully, the medication went down better the final time of the day. I told her she’d have some cranberries, which I showed her, if she swallowed. And gave her the meds while she was lying down. Like other babies, she’s still lying down to drink even though her bottle isn’t a baby bottle any more. So I know she won’t choke.

Will see how this morning’s dose goes. But I’ll phone in anyway for more as well get closer to the end. Firstly, the pharmacist left out 5ml because she’d have needed to break open a whole new bottle just to mix in that 5ml. And because we lost some meds through the reflex shudder when she tasted some. On the other hand, if she doesn’t seem to be getting better, I’ll frantically look for a paed and see what s/he says. GPs are fine. But sometimes specialists are what we need. They’re just usually extremely fully booked for weeks.

Why did I blog when I had basically quit? one more follower. I felt unfair to them to have them follow a dead blog. So here I am. Despite the heaviness.

Because They Write

First! I had a little miracle moment! And it showed me something about myself which I will delve into first before I talk about the little miracle. I am giving, and not expecting or demanding anything back.

I think of a mother who was lamenting that while she was talking to her autistic child, he was lying on the floor playing with the dog and not paying attention to her.

How would she know? If she can multi task, why can’t he? Who said he wasn’t paying attention? It’s similar to the concerns my teens had when I told them I want us to start using ASL (American Sign Language) to communicate with our girl so that hopefully she too would communicate with us one day.

The immediate response was, “But she doesn’t look at us!” So I made my son look ahead while in front but to the side of him, I made the ‘thank you’ sign. I asked if he had seen it. Of course he had! So I told him that we don’t have tunnel vision. Just because she’s not looking directly at us doesn’t mean she’s not seeing us. Something about the mom’s anger rubbed me the wrong way. And so what if the child was not paying attention THIS time? What if next time, he does? Why give up so quickly just because he’s not behaving the way SHE wants him to behave?

Alright, I’m off my soapbox!

Today, my youngest autistic angel used sign language to communicate! When I gave her milk last year, she did once sign milk, but it was in response to seeing it. This time, she ASKED for something using Sign! Her brother was taking too long feeding her twin and she wanted another spoonful of her food so she took his hand and with her other hand, made the sign for eat!

Like with spoken communication, I don’t know if it was a once-off, or if it’s the start of something new. But wow, we were both excited and happy! Go, baby girl!

My little miracle… After her bath, I went into her room. I tapped her knee and said knee, three times, then suddenly moved to her toes where I happily shouted “toes!” and gave them a tiny squeeze.

She put her hands to her toes and GIGGLED!

My girl giggled in response to my playing with her! First time ever! And this is why I say I don’t do thinks to get a a response. I do them because she deserves them. I was not expecting nor wanting any reaction whatsoever, because I never get one. I was just reminding her of her body parts in a way that’s fun for me. And seemingly fun for her too. I wish I could have bottled that giggle up.

The title of this post. My eldest is going to be assessed next month by a psychiatrist. He and his siblings know that I blog and post about them. I often tell them what I wrote about them, or ask if I can share something. He said that he isn’t sure that he will want the results of his assessment known by a bunch of strangers.

I told him that my readers are lovely people who only want the best for us. I told him that I want to be a blessing through my family and I know that those living in the daily trenches of special needs parenting need to know they aren’t alone, but that his desires will be more important. His exact phrasing was, “But I’ll decide how much of it I want on social media after the results.”

A young lady who I highly suspect has her own fair share of needs said she too would keep her diagnosis private should she ever pursue one.

It made me think back to the overwhelmed mom who said my honesty was a breath of fresh air and she felt seen and understood. That she felt like everybody judged her for not going to church with her autistic son but that my posts encourage her to do what is right for them both. It reminded me of the young mom who reached out asking if I thought her little one was developing in a typical way as her husband made her think she was imagining autistic traits.

I post to bless. And I know that with my honesty, my openness, one soul is blessed.

But I’ll not violate my son’s privacy.

It made me think of the brave souls who share. My friend Nomzamo who shared about her Bipolar disorder, the actually autistics, the ADHDers, the adults with FASD who write blogs, post on instagram, do videos on YouTube… They are BRAVE! It takes a lot to be vulnerable, to say, “This is what autism means to me.” It’s brave to speak about the limits it places in you. Like the ones who say they can’t drive because of it. It takes a lot to be an activist too. To tell the neurotypical world that you’re a living soul behind that label and that you want to be respected and heard.

Because of those who write, I got to diagnose my daughter. I write to bless. They write to educate, entertain, vent and advocate.

And they write to bless me. They just don’t know it.

Thank you for your vulnerability and bravery. It really IS brave to share the things you share with us total strangers. May you always find compassion and understanding to make up for the trolls who will always be there. You’re my super heroes. Thanks to you, I know what to expect, I understand how my children feel, and you encourage me to trust my gut.

You are my guides. You are my blessings.

A Mini Miracle and Only Partial Success

Sooooooooooo. First the not so Great, but OK news. They were able to free my ulmar nerve from where it was trapped in in bony groove of,y elbow. But the plan had been to also do a nerve transposition – move it to the outside of my bone so that it can never be trapped again. ( This is all happening in the inside of my arm. The side closest to my body.) BUT, the surgeon didn’t do the transposition because I don’t have fat on my arm, which means my nerve would be in an even worse position, only kept from being hurt by my skin. (No padding to protect the nerve.)

They weren’t lying. They gave me four different types of painkillers. I’m spacing them out and all they’re doing is taking the edge off. No carrying even a cup of tea allowed. I’m now living like I’m left-handed and doing a poor job if it! I must keep the dressing on till I see the surgeon next month, and I must definitely keep the sling on all the time till Monday when I can -here and there -start moving my arm a bit before putting it back on. I have no clue how I will sleep. I can’t pull myself onto the recliner with one arm, and I’m scared I’m going to roll onto my sore arm in my sleep. It’s actually the side I sleep on most. We shall see!

I don’t know what the partial success means for the long term, but I told my middle two children that if I could live 42 years before it happened, then I should be fine for another 42. Both the anesthetist and surgeon warned me that “Nerve hurts, that’s it’s job,” so I will be in significant pain given what they’ve done to it once the local anesthetic they added wears off. (I did have it under general too.)

Now for the mini miracle!!

This week, I was wondering how to get my first born officially diagnosed. The neurologist who confirmed my daughter’s autism is full of tosh, and the one who first diagnosed my son no longer sees autistic patients. Also, she is FAR. I told a young lady about my not knowing who to take him to.

You know how it is in hospitals, only a thin curtain separates you from other patients, so I overheard a mom tell the nurse that she had not given her child his ADHD medication today. ( You know the drill. No eating or drinking on the day.) My ears perked up. I’d seen the child, it’s a teenager. Meeting an older ADHDer was important to me, so I called out, asking if I could talk to them. They said yes, so I pushed the curtain aside and asked if they minded if I asked about his ADHD- his symptoms, his doctor… They were both OK with it so I asked how his ADHD affects him, the mom told me how old he was when he was diagnosed, how meds affected him, and the current meds he’s on at the moment. So cool! I was touched that they’d let a stranger into their world. Of course, I first had mentioned that two of my children have ADHD, hence my interest.

Now the cooler part is, a while after I’d gone back to my bed, the mom waved her hand through the gap in my curtain and asked if she could come in. Of course she could! She came bearing the name of the child psychiatrist treating her son, her address, and her telephone number! She’s not very far from us and she isn’t one of those who wants to recommend therapies the children don’t even need. Win!! ( I’ve also recently seen a lot of adult autoistics asking why certain therapies are even needed, some stating how therapy gave them PTSD, and how they gained absolutely nothing. OT and some of speech too were the worst. OT because their sessions were focused on making them fit in, and speech was useless to some because they-like my son – have auditory processing disorder and speech discrimination issues, so they just CAN’T reproduce speech the way the therapist wants. Literally can’t.) Obviously therapy can be a positive and is needed. But not always. So yes, this psychiatrist sounds like she’s right up my alley, and my first born is looking forward to being assessed!

Surgery might not have accomplished everything it was meant to (Story of me my life these days) but it answered a question I’d asked and received no answer for in a group I had asked in. (Everybody recommended the lying neurologist.) None of them my race. I brought race up because the mom mentioned that the psychiatrist is Afrikaans, “but nice.” (She’s White, ‘English’) I found that interesting coming from a non-Black especially!

Hoping for a speedy recovery, sleep, and no more operations. But yes, this surgery gave me information I would have never had otherwise. I have Googled child psychiatrists and never come across this one.

I’m happy.

When They Go Missing

I won’t say much today. Just thinking back to the pitiful stats about average age of death of non-speaking autistics and even if those who speak and don’t have intellectual disabilities. And linking it to these two photos.

I used to see posts of missing autistic adults. In one of my local Autism groups, tow moms spoke of how their non-speaking children are runners. Of how the community knows where the children belong and know they are runners so are used to them being out alone, having snuck out their homes without their parents knowing.

While it is good that the community looks out for each other as I know here in my own community, what happens when an ‘uncle’ they are used to lures them somewhere from which they will never return? We’ve seen it in the Tazne van Wyk story.😭

I hope and pray that this young one is brought home safe. QUICKLY! His loved ones must be out of their minds with pain and worry. (Harare is not only in Zimbabwe. It’s the name of a poverty stricken township here in Cape Town.)

It can happen to anyone.

To Speak or Not to Speak, That is the Question

I don’t know where we will be in a year, three years or in ten. I don’t know what our non-speaking angel will do or not do. I only know the present. And the present is that there is no speaking to communicate. (She said “dog” today when she saw one.)

Firstly, I just wanted to show my ignorance. I’m used to autistics like mine. My littlest one wants to eat all day. She pulls you by the hand to the cupboard where peanuts and raisins are put and if you don’t play ball, she finds someone else to pull to the cupboard. She eats enough. She’s our chunky angel. But she doesn’t have an off switch when it comes to nuts and raisins. So when we say no, or if it’s time to eat and we give and then stop, it’s cry time. She will cry and scream till she can’t breathe. It’s HORRIBLE. I know some moms who have to lock their kitchen cupboards and fridges because otherwise they’d be empty. It’s scary. We want our children to be healthy.

I therefore never thought of any other possibility. Till under the post of a mom saying she wished her child could communicate so she knows when the child is hungry or thirsty, an adult autistic who doesn’t speak but uses AAC (augmentative and alternative communication) wrote that she herself doesn’t know when she’s hungry or thirsty so maybe the child would never communicate that ANYWAY, even if they did find a way to communicate.

It really got me. That’s just…wow. So without reminders to eat, what would happen? Without the knowledge that she needs to drink..? What happens to those who aren’t cognitively aware enough that there is such a need that should be fulfilled even if they never feel the need?It’s scary! I just never knew it could happen to autistics though I’ve come across it being mentioned.

Back to us. My angel doesn’t speak to ask for something. If we bring down the wrong item from the shelf she has pulled us to, she pushes the offending item away and again pushes your hand to the shelf or cupboard or you take something yourself. You’ll know it’s the right one because she will take it. Sometimes, it seems she goes there with something specific in mind that isn’t on the shelf. So every item you hand her, she pushes away. We end up picking her up so she can take whatever it is herself, but she never does ‘find’ it. It’s a slow process. And doesn’t encompass all of communication.

Which leads to this post. So then what? If she can’t speak how will she communicate her needs or wants? She is apparently too young for Spelling to Communicate (S2C) and isn’t really a good candidate for picture boards as she doesn’t look at pictures (yet) and doesn’t even want to use apps on electronics (yet). Not interested (yet) in the iPad last time I tried and not interested in pictures whether printed or on the phone or iPad.

First step? American Sign Language. “But you’re South African!” I hear you exclaim. Yes, but we don’t have child-centered SASL (South African Sign Language) videos on YouTube. It’s not only I who needs to learn it, but the children too. Especially my non-speaker, who does watch bright baby and toddler-friendly videos. And after all, it’s not like we are part of the Deaf community here so she won’t use it on someone here. It will be for us. And it’s only a first step. We will still find other means of communicating. Like typing.

Who knows? Maybe Sign won’t work. She has stopped signing the few words she used to. And some autistics never ever find a way to communicate that others understand. But many adult autistics in an AAC group I’m in mentioned using ASL. I’ll try for her sake and mine. I have nothing to lose (except time spent learning.)

Trial and error. One step at a time. AAC is not a big deal here yet. Especially not in Cape Town for someone as young as she is. Apps, devices, therapists that teach them and help find the right ones… It’s not as big as in the States. And the time is not right for us to start the therapists and devices route yet. I read of one South African boy who used to eat his letter pieces, and was rough with devices so only learnt to use communication devices at age 9. What works for one, won’t work for another. Or will work, but later.

So my journey to finding a method of communication that we will understand begins. (Not the very loud shouting and high pitched shrieking that is pure vocal stim and keeps us up till 10pm. 😅Her own ‘speaking’ voice.) Her twin sister still uses sign language even though they haven’t watched the videos in a while. It’s cute. If let’s say, she can’t take the lid off a washable marker, she will sign while saying, “Help. PLEASE” in the American accent the woman in the video uses. Maybe my non-speaker will follow suit one day. Who knows?

Only time will tell. And no, unlike some parents who think that it will reduce the likelihood of the child speaking, I am not worried about that. I’ve seen AAC users who became speakers. Some moms are extremely adamant that their children MUST learn to speak and so don’t want to teach them other ways of communicating. What will happen if the child never leans to speak? What wasted time and opportunity when they could have used another way to know what’s on their child’s mind.

God forbid. For me, communicating is more important than speaking, despite my still hoping she will speak. I want to open her world . Then she will decide what works for her, and we will work on it together.

What is stuck in my head are the words of an adult AAC user who said that she has the words in her head, but to try bring them out her mouth makes her extremely terrified so she is very thankful to be able to type. Others said that it’s painful to speak, or it feels as if there’s a block or wall between their brain and their mouths, and they can’t find the words they want to speak…

Force my child to perhaps do something that she cannot ever do? Or wants to do but will cause her intense mental anguish? God forbid!

At Least

I read a book by a man whose wife died from a Parkinson’s related issue. But before going into her suffering and death, he delves into their individual histories and their meeting and marriage. I was moved by his narration of a doctor’s appointment where the wife told the neurosurgeon that her greatest pain, hardship and heartache about having Parkinson’s was that she was not able to hold her grandchildren.

As I’m sure you can tell from all my posts, I could most certainly relate to that grief. Except mine is about my youngest children who I can’t pick up and cuddle and love on and haven’t for most of their lives.

Next week again will start another countdown to when I’ll hopefully be able to hold them. And that’s the hope I have lived with and will continue to hold onto.

One day, all these surgeries will be over and I’ll be able to mother as I would like to, or at least do it more than I have these past few years.

I don’t have Parkinson’s. I don’t plan on things getting worse like those with Parkinson’s have to. It could be worse. The year began with hope. My brother declaring and “praying” that there be no further surgical operations this year. Sadly, that has not yet happened. But I CAN hope that this is the last one not only of the year, but of the rest of my life.

I can plan on recovering. On getting back to working out and getting strong. On seeing a pain specialist and getting my back pain reduced. I can plan and hope that though I’m aging and aging faster due to my ovarian issues, I won’t be cut up. I won’t be debilitated further, or more than I am or will be in this post-op period.

I can plan on holding my children even if by the time I can, they will think they are too old for it. i just need to be strong for 7 weeks. In 7 weeks’ time, things will not be worse, but better.

Isn’t it a privilege to be able to hope for better? Unlike those with progressive conditions whose only hope is to push the ‘worse’ further away?

What a Pathetic Mother

From the very day my twins were born to now, almost three years later, I’ve spent every birthday of theirs not allowed to carry them. This year’s birthday will follow the same horrible trend.

Recovering.

This is even worse because my one twin is cutely obsessed with me at the moment. She comes yelling for me, wants me to feed her, so things for her. sit down with her..it’s hard enough balancing her needs and the dishes or dirty floor I’m busy with. Now I’ll be recovering yet again and not allowed to lift her.

The adult adoptee we lost to suicide, who I post about quite a lot, would have understood. She posted quite a bit about feeling inadequate. Hating being in pain and not being a good mom because she can’t play like other moms can. I would end up in tears because I know exactly what that feels like. I just didn’t know it could get worse. My in and out of theatre life hadn’t picked up. Before this, I’d averaged a surgery every three years. Now it’s many each year.

I wish she was still alive.

Those tests they do to test your nerve are PAINFUL! The doctor was lovely but the tests! And the pain lasted till after I got home. If ever I had any doubt, it’s been erased.

The orthopedic surgeon asked how I felt. Right now I don’t have muscle wasting so we are in a good place. But I’ve lost low strength. I’ve been dropping things this weekend. So we can’t afford to wait and watch too much longer as any further damage can’t be undone. I told him I keep wishing I’m imagining the problem, that it’s all in my head. He said we’d then have a bigger problem cos then we wouldn’t be able to fix it.😅 True! It would be more difficult to fix! (Ever read The Man Who Mistook His Wife for a Hat?)

I just want it over with. Not only this upcoming surgery, but all surgeries. I wouldn’t mind a bit more normality and less cutting and general anesthesia in my life. I don’t know how I’ll manage the twins when my teens are doing their exams from next month. It’s not like I’m going to be allowed to even pick them up. Forget the issue of there being two of them with two totally opposite interests. (My walker-runner still likes to walk and run. My other one likes to be in the lounge playing with a doll or play dough or drawing.) Add not being able to dress them, change them, get them in and out of bed and we have a slight problem.

This will all be over one day. And I can’t wait.

Why Me?

(Giving context at first for new readers)

I told her I had concerns about my girl’s vision. At that point, I didn’t have a name for it. I just knew that she was skipping lines when reading, and not writing as she should, and that no matter how often I showed and told her that words need a space between them, when she wrote, it was all one long garbled word that didn’t stay on the line nor reach the top of the line when needed, letters were left out, and words and numbers were backwards.

She told me to take her to a behavioural optometrist for complete testing and if all was ok, then I had nothing to be worried about. She “only” has ADHD to contend with and with help for it, she’d be “fine.”

She was wrong. An occupational therapist assessing for other oasis’s confirmed it too just a week after I’d discovered what it was thanks to an adult with ADHD on Instagram. Visual processing disorder.

The home programme given for the visual processing disorder by the OT was not sufficient for our needs. We had more content for the low muscle tone and weak core than for it. What she did give was too difficult for my girl. What she did suggest was also too hectic for her. 50 piece puzzles when she can’t even do 15 piece puzzles.

We were on our own except for one website she recommended that sends free worksheets maybe once a month. Mazes, dot to dot activities…Until recently when I came across a free book on Kindle Amazon on helping children with weaknesses in Visual Discrimination and Processing. I ordered it but had to email the author for the printable PDF.

And that email changed my life. Truly. I’ve lamented many times how guilty I feel that I can’t help my children thrive in every direction. How helpless I feel. How there are more resources like OT, Speech Therpaists etc for special needs children (especially resources that are respectful towards those of colour) in a different province -Gauteng.

When I thanked the author, a special educational specialist with a PhD, for the resource-though a bit high grade for my girl- and told her how I’d been struggling, she invited me to a Zoom consultation. For free.

She’s in America. I’m here. As soon as I said, she knew the time that would work for me and her and wanted to do it that every day or the next! Talk about being blown away. People don’t really rush to help me. In fact, I have one who did the opposite just this past week. She recommended herself under a post of mine looking for an IGCSE maths tutor that PARENTS had used. She wanted me to pay for a full package (set of lessons in advance) before meeting her. No parent had recommended her and there were no reviews on her page. She wanted me to not only pay in advance, but refused to even tell me where I’d be expected to drop my child off for the lessons. She did tell me the name of a bus stop near by… Lets just say that my friend (White like this tutor) and I saw something in that reference. Not only do I drive and not use the bus anymore which sadly many of my people still have to do, but I truly have no clue where this bus stop is that she referenced. I won’t even go into why she would reference a bus stop and what it says about her. My friend already did. And for this tutor to tell me that she won’t tell me where I’m PAYING IN ADVANCE to send my child “because of safety reasons” says a lot about what she thinks about people like me. I won’t go there either.

So yes, for this American educational specialist to make time so quickly when she voluntarily offered a service for FREE was a breath of fresh air.

She said that she has a love for Africa. Her father was a doctor of tropical medicine on our continent and she spent part of her childhood on the continent. The things that touched me and got my heart the most after spending an hour going through tips and resources were these two things.

I’ve tried finding a special educator for my children, but couldn’t find one. And also, the reasons I homeschool are the reasons I’d not WANT to send my little ones to a stranger anyway. I’ve sat in on speech therapy some of what the speech therapist said to my girl grated and so chose a different one for my son’s assessment. The OT at least did keep asking if certain things (public swimming) went against our principles or not. So, I tried to find courses online to help me learn how to teach my children myself. As the psychologist said who confirmed my little one’s autism, “So with the children, you’re not only a teacher, you now have to be special needs teacher.. That’s a lot.”

I tried to find courses on teaching children with the special needs mine have but couldn’t. I only saw one on Coursera but it was on teaching autistic children in a classroom setting. I signed up, but never ‘attended.’

This author not only provides resources for children of all ages to strengthen not only those with dyslexia, visual processing etc, but also executive functioning, which all my special children struggle with too. And also, she has COURSES for educators!!!! An answer to a long held prayer and need.

The second thing… She said, “I don’t know why, but you really touched me. So, I’ll give you 5 coupons for 60% off from both my websites. And if you need any more, please let me know. These will last till December…”

“I don’t know why…”

I don’t know why either. Why me? And what do people see in me that I don’t FEEL!? I FEEL like I’m just living, and hanging on by the skin of my teeth. I feel like I’m constantly agreeing with my friend that God must just give me a break. Just one break. I feel like it’s sad that I have to say, “I’m thankful for life, and yes, it could be worse, but it sure could be better!” I only this week started changing diapers. But at the back of my mind, as I feel the numbness and tingling getting worse, is knowledge that one appointment next month will rip that away from me if I indeed need surgery again. It’s not that I won’t be able to care for myself. It’s that again, I’ll be .. NOT the kind of mother I want to be.

I think that’s it. That’s what I feel. I feel like a bad mother. I feel like my love and words should also be mingled with actions. Every time I’ve not been able to wash their bottles, make their beds, heat their (electric) hot water bottles, do their hair, go out for a field trip, teach them, I’ve felt BAD. And preparing for yet another surgery when all the twins have ever known is a mother under the knife, is guilt-inducing.

I can take the arthritis. I can take the IBS. I can take the back pain. I can take the weird inability to keep breathing at night. I can take the gastritis. I can take being a mother of many special children. But when I can’t sleep at night and I can’t sleep during the day and I have to really work hard at feeling positive and acting it when I take that first step out my bedroom and my joints in my body scream, I don’t feel great. Shouldn’t I immediately want to rush to go make their breakfast given how I’ve not been able to? Instead of wishing I could rest?

Do I deserve a whole 60% off even though I’ve prayed for such a gift for months now?

I don’t know. I do know that for a change, “school” (The visual discrimination session as seen above l, actually!) is not boring or dry for my girl. She feels like she’s playing.

I don’t know why she chose me to give a whole 60% off much-needed resources. But maybe by the time I’ve used all the coupons, I’ll have figured out why she did.

Maybe she felt “positive energy” too. She must have, because during our Zoom call she even jumped up and showed me a counting dance she does with one of her little clients who, like my client😊, struggles to count. FUN maths. And boy do my children need fun to mitigate their struggles.

Why me? I don’t know. The struggle could be so much harder. But Providence provided people who see smiles when inside I always feel like my heart is breaking. The lady who sent the message saw me at Dis Chem. (I think it’s what Americans call a drug store?) I bad being there because it meant I wasn’t taking care of the children. Yet I was there to look for something for two of them! She saw smiles and strength. She didn’t see my prayers for a break.

May I continue to pay it forward to others who also pray for a break, just one break. May I be an answer to prayer like this learning specialist has been to me.