Author: Grace by any other name

Lo, children are an heritage of the LORD: and the fruit of the womb is his reward. Ps127:3

This is my ten year old girl in her elk onesie hugging her five year old sister in her rabbit onesie. Her heart is pure and sweet and she gives her heart to her tiny sister even when she’s being rude to people. (The joys of copying what her older teens have taught her to say.😏 Like “Shut up” to older people – not to me. She knows I know we don’t use those kinds of words so she keeps them for when she’s moody with strangers.)

My second girl loves hugging her sister, kissing her, and me. Out of all the chaos of feeling abandoned by her birth mom has come a stronger feeling of belonging and sense of family. She always calls me “My mommy” as if to remind herself that she is mine in every relevant way and I want her. I chose her, as her little sister said. She knows I’d rather suffer than allow her to feel pain of any kind. I am her safe space. What a gift!

And speaking of safe spaces. I wrote down the recommendations I might not already have been implementing for my girl. Turned out there were very few. I’m already doing a lot for them-not just her- and it was written in the section regarding how academics would stress my angel more and so we should think of her doing vocational or practical training in the future. One of the strengths was that she is “already in a personalized, low stress educational environment.” HOMESCHOOL WIN! As in, I’m a mother who doesn’t care about academics to the detriment of mental health, and am aware that you can’t force your brain to do what it cannot. Also, the report mentioned that she can’t say why she’d improved in some aspects except for it having clearly been my intervention, vision therapy and occupational therapy. I’m part of her intervention team! Man, it’s the second time this week that someone has seen the effort and time and work it takes to raise, educate and love my children.

It gets lonely doing this over and over again, nobody to discuss your plans with, nobody to look at recommendations with and help find affordable help. Eg. The one recommended ‘curriculum’ for dysgraphia is extremely expensive. But there are others too. I’d just love to have a partner sharing in the search for aids for my children. It would allow me to look for help for a different challenge or for a different child’s challenges if I had a partner, a team mate in this parenting special needs struggle. Being the only one doing exercises/home work with the children is stressful. If your bones are just too sore and the fatigue too heavy, you feel guilty that it means a day has gone by with nothing therapeutic having been done.

And I think that is also why it is so meaningful when someone out there sees the impact and effort of this lonely work. My children have no clue how many hours I spend trawling the internet, converting dollars or pounds into rands, waiting for another pay day, searching for recommendations from other mothers in the trenches. We don’t want to be thanked. But we NEED to be acknowledged.

So, now what for our little ones given their struggles?

This week I added on another ‘executive functioning’ session on impulse control. We bounced (They did. I just skipped) and when I’d say “sleepy sloth,” they’d immediately have to get down wherever they’d been bouncing bunny and curl up and rest. Feel their heart beating, note the breathing. Again, from a reputable book I searched for and found and bought and put into practice on my own.

Things our ancestors wouldn’t have known to do. Knowledge is power. How many children and adults out there can’t reason well and perhaps if they’d had executive functioning support and help, might be a bit better than they are now? Another thing that stood out in the report is that some of the issues might be caused by an impairment in intellect. So… How many people have been labeled as ‘not hardworking’ or ‘not meeting their potential’ when actually, they have? Do parents even bother spending time with their children discussing their challenges? My girl is extremely motivated. She tries everything and asks questions, something the report also brings out. If parents don’t engage with their children, they will assume the child is disinterested. Parenting needs to be intentional!

Another thing I’m enjoying is the joy my one five year old has for school activities and fine motor tests etc.

She was truly convinced she’d not manage a puzzle that had more pieces than normal. But did it, and then kissed the puzzle. She loves learning! She frequently wants to do much more than I’ve planned for the session, and is working as best as she can.

And we have to smile. How many children would think the capital B is like the tablets of stone Moses had? Only autistics and other cool kids. It’s true, it does look like popular depictions of the Ten Commandments- sideways!

She always finds a way to make me smile. While searching for objects in a picture. and counting how many there are of each object, she had fun pretending to be using binoculars. That is not typical. And I love it.

No other kids in THIS family have done that, I really pray she never stops enjoying learning. And always inserts her own ‘seasoning’ into her classes.

Not forgetting my son. I asked him to take his “building” away and he tells me haughtily, “ It’s a CAMERA, ACTUALLY!”

So, we resume OT next month and continue with vision therapy. My son had a so so mini assessment. Stuff I’ve BEEN saying is not working during our home exercises is definitely not happening for him- like eye convergence. So we’ve planned ten more sessions for both children for now. That’s also what’s next.

Our last born is nowhere near ready for any therapy. And I have no idea how much of the ‘educating’ I’m doing is actually going IN. But hey, she also deserves to be mentioned🥰❤️She’s still scared of people and can’t engage with them long enough to learn or do something at their bidding. She now is in the habit of grabbing her siblings’ food while they are eating, even when she hasn’t finished her food. Our life is one of constant fire fighting. She wants the large bowl or pot and a larger amount than anyone else. So it leads to a lot of cornflakes that we know she won’t eat. And if I forget to hide food in the cooler box, tofu eaten in bulk though thankfully the actual portions eaten are minuscule most of the time. If one has left their bowl of noodles carelessly on the counter to eat later, she will eat it without batting an eyelid. As if it was out there for her! You just have to laugh. It relieved the constant tension of wondering what will set her off. And, to be honest, her twin, too. I do have three children who need anti psychotics. The girls are much worse than their brother!

I will focus more on incorporating all the things from the various textbooks I have, and relax. God will help me find a vocational/practical curriculum somehow, seeing as our government hasn’t given us a school. For now, I focus on treating the bad cold complete with sore throats and horrible coughs that has made them miserable and my non speaker even more difficult to control, harder to keep her from crying and screaming. I hate autism. Did you know that? And dealing with the fear I have of catching their bug. I don’t need further lung damage. I just want everyone to feel better asap and nobody else to catch it.🙏🏾 Every Sabbath has a challenge.😅

Hoping that my children never forget how much I love them. They know it now. I hope they know it always. The girls are currently obsessed with taking photos and video… And that’s also what’s next. Continuing to smile when they tell me to, and looking at every picture or video they show me. Teaching them that mom loves them and is interested in anything good that interests them.

I was referring to the stupidity of having to wait till he was three years old for an autism diagnosis for my son when I knew when he was six MONTHS old that he was autistic. So we were holding on, waiting for my girl to be the right age to test for what I always feared- dysgraphia and dyscalculia.

And finally after a long wait for the report of assessments completed in February. It is written. My poor angel has them indeed. Basically it’s a disorder that stops you writing clearly and well (‘dysgraphia’), and a “specific learning disorder of mathematics” aka “dyscalculia.” She can’t learn these things. These are incurable and hers are quite severe.

The final conclusion is one I’d drawn last year when she asked, “ mBut what job will I be able to have?? Can I go to university? Isn’t it too higher grade for me?” I told her I suspected it might be too much but there are jobs where she doesn’t need to have done academics. I’ve been following The Living Link even though none of my children are the right age. It’s a hands on practical training place for disabled (in different ways) youths to find jobs. Macdonald’s, car factory.. I knew one day that someone with thorough training in all these tests might state what I have felt for a long time. “She would benefit from a vocational/practical educational curriculum.”

You know when someone makes you feel like you’re a bad parent? The first educational psychologist I saw brushed away all my worries (It’s bad guys. In some cognitive skills she’s actually become WORSE. She’s in the lowest of the low in many thinking ability type skills.) and said, “No! She will be fine, she’s fine! She will be able to be a lawyer.” Nope! With the reading challenges, memory etc? Nah! And that’s ok!

I love my girl and more than anything else, I feel the weight lifting. I know my angels. I know their weaknesses AND their strengths.

God will help us figure it out.

I opened the bathroom door and BOOM, there they were. The younger one had been yelling and yelling that I must come out. Stress is not good for a stressed bladder! And then there’d been silence so I got a huge fright when I opened the door and found them there!

I told them I was putting their photo online so people could see the children who when I expressed shock and fright at their presence, had their five year old spokesman saying, “But of course we were waiting! You were taking too long! You need to know I finished my food..so I’m waiting for my treat from you!”

Priorities ☺️

I dream. I wish. I hope…

Side effects are not too bad but they are there. I have begun with headaches, stomach pain, where the hole in my jaw was has begun aching and I’m worried any latent infection that might have been there has been revived. I’m dreading making my check up sooner because it’s so painful to drive and my Endodontist is ‘far’ from where we live, and a mouth ulcer on my tongue is forming.

That’s, of course, is nothing compared to how susceptible I now am to sickness. JAK inhibitors are worse than biologics with regards to making you vulnerable to catching disease, and you all know how we had to stop Enbrel so it never achieved efficacy. One, because you can’t be on an immunosuppressant while sick (obviously) and because I kept getting sick, once even going to Trauma, so I never got a chance to take it long enough to see if it would put me in remission, so we quit.

This time, I’m armed with the N95 mask my pulmonologist said I should wear in busy places. I have sanitizer in my car- though not helpful when I go for my limping Sunday shopping because we use my husband’s car and I don’t have extra sanitizer and I know if I remove mine, I’ll forget to return it.🤦🏾‍♀️

I’m better prepared to try AVOID getting sick.

But I can’t ignore the extremely high risk of heart problems, hospitalisation due to severe infection – a mask doesn’t keep you safe from bacteria. Remember how I almost had it have surgery when my finger got infected? The liver issue is big. And according to my insert, “frequent” just as people in my groups have experienced. Mouth sores, painful acne, stroke, sepsis… Very dangerous even without my already having damaged lungs thanks to AS itself. 🥹

So, if the side effects don’t become so severe that like many others, my rheumatologist pulls me off the meds, and I can get rid of these horrible headaches, heal my current sinus infection and escape from too many mouth sores and having Rinvoq WORK, what do I dream about?

I want to be the cook and baker I used to be. My four little ones don’t even know that person. I used to made delicious vegan zucchini chocolate cake. (I mention it because it sounds weird out of all the things I used to bake, but it worked well!We all loved it.) I made yummy kiwi fruit ice-creams. I baked and cooked on the same day. Today, just cooking is a whole day affair (also because I’m still mothering and teaching and doing therapy) and it’s becoming worse. I’m in so much pain and fatigue that I’m missing out on full activity with the children. So with cooking, I end up finishing late at night in extreme unbearable pain and don’t forget, I already take 10 pain and anti- inflammation tablets a day. I end up still in worse pain the next day I cook.

I’ve now opted to order frozen cooked meals for the family and then I cook the vegetables or make the salad to go with the meal, and just season and mix the food according to our taste. Even that hurts. It just hurts less and is quicker to achieve.

I can’t wait till I can split up the middle two children’s meds without suffering, forcing myself to keep going till I’ve broken the ones that need breaking, removed tablets form their blister packs, putting them into the relevant child’s weekly pill container and needing to recover thereafter because it’s too much standing.🥹This disease is cruel!

I miss baking. I miss the smells, the help I used to get from my now teens as little children. How they enjoyed licking the batter from the bowl and whisk. I enjoyed it soooo much, ever since I was 13 years old! I’m too young to not be able to do this!

I dream about being able to do all the school work and vision, occupational etc therapy I set out for the following day, instead of feeling like I’ve deprived my children of my best.

I dream about taking walks. Driving my children to see nature, or to a play park. And enjoying watching them marvel at the animals. I dream about enjoying going to the beach with them. I haven’t gone in over a year- they go with their dad because after five minutes, I’m hiding how in pain I am and I’m the first one to eventually call it quits while the children are still having fun splashing in the water.

This was the last outing I took with them and you can see the impact it had on me. And it’s been over a year now that my Nalo has been done with her Pharoah phase.

I dream about being able to make the bed without pain. To change bedding and be able to hang washing without shoulder pain and arms just not being able to continue without a long break. I miss piling all our laundry into one basket per load and carrying it out in one go instead of taking a few clothes at a time… I miss ironing. Those activities are so soothing to me. I miss being able to clean my own bedroom!! I sweep only maybe a square meter and I’m in too much pain to continue. (I also miss dusting. Yes, I know I must use a wet cloth so the dust doesn’t fly around and trigger illness. My rheumy did tell me.)

Even holding the children’s tablets is risky because my fingers don’t close properly and I’m dropping things a lot these days. Closing the children’s bottles hurts my fingers when i have to press down on the lid.

I dream of painless hands.

I dream of lungs that don’t progress in their scarring. I have begun my winter cough and it’s frightening the children because it sounds like I’m sick. That smoker’s cough that worried the GP so much that she wanted me to return before even a week was over. My pulmonologist made it clear that only finding the right treatment would slow down lung disease progression.

I dream of exercising.

I dream of being able to read to the children in the evenings. I can’t even lie in bed and read like I did most recently. Holding the book causes shoulder pain.

I hope that I get stronger, have less pain, my lungs stabilize and the chronic fatigue go away so my daughter stops worrying about me.

I dream about being normal.

Please God, may this be the one to stop the inflammation in bones, tendons and ligaments. To stop killing my lungs. It is possible. May it be MY reality.

ETA- in the meantime, I’ve now got another painful white ulcer on my hard palate at the top right to add to the tongue sore. PLEASE, let this be worth the increasing suffering. I haven’t even taken the tablets for a week yet. I hope we have here in SA, the “magic mouthwash” the States have that they tend to give to chemo patients who have terrible mouth sores that at least temporarily numbs the mouth-apparently a mixture of numbing gel and what not. I’ve bought folic acid and L-lysine because people said those sometimes help with these sores. One poor woman was told to stop the treatment because the sores were not going. It was sad because her disease was responding.

This is one frustrating disease. We live on dreams, dashed dreams, hopes fulfilled and hopes denied.

I dream of minimal to gone away side effects. Some do stop after a few months.

You have to feel the sad moments, mourn them, then happily (or at least contentedly) move on. But it’s very difficult when you carry guilt in your heart.

It’s going into winter which means, colder nights and mornings. Not good for chronically ill lungs which get narrowed by cold air. I’m already on an inhaler given me in March by my rheumatologist after she listened to my lungs. (Hey, the positive news is that Medical aid will pay for my inhalers and two chest x-rays and a chest CT scan until the year 9999!)

But you can’t repair lung damage and mine is getting worse. From the normal winter dry cough that used to prompt an old doctor friend to tell me to get it sorted out ASAP to today’s bad sounding cough-the one that shocked and worried a GP… Yesterday I felt guilt over THAT. (I’ve already posted about AS guilt and I have more. Amarissa’s educational psychologist said that during her emotional assessment, my girl expressed worry about my Ankylosing spondylitis. NOT GOOD.) I’m used to the new sound. Deep and like you’re sick, triggered by movement that makes you breathe faster. I coughed and continued with the laundry because it’s normal to me, but my five year Nalo, echoed by her nine year old brother, Micaiah stopped their conversation and their chatter with each other and our half day driver and asked, “Are you ok, Mommy?” I felt so so bad. I told them it’s ok, it’s me, nothing new. Then I coughed again that deep cough a few moments, and Nalo said, “I’m sorry, Mommy.” Amarissa also said something in between but I couldn’t hear her clearly. But what I do know is that I ‘made’ all three children worry.

Not good.

Then in the evening, they went with their dad to the pharmacy to choose sugar-free sweets for their weekly treat using their pocket money. (They don’t have bank accounts. We just tell them they have money and then forget to count how much they’ve used up!😆) This time, Micaiah felt sad. He said, “I’m sad.” Yep, he was. Don’t tell me autistics don’t have feelings. Another lie! Many do! They just might not excited out the way you expect.

Some boy has told his mother, “I don’t want to be like that boy.” While looking at him. We have discussed (on here) the genetic syndrome that might be the cause of the low set and back facing ear lobes (and other invisible unless he’s naked signs) so perhaps the child noticed them? I don’t know. All I know is that my son was VERY hurt and his sisters were hurting with him. I wish I could protect my children from the world!!

I told them that perhaps the mother had been telling the boy to stop nagging for things and be quiet and calm like Micaiah. I REALLY implied that was the most feasible reason. 😅It indeed could have been. I’ve heard mothers tell their children to stop it and be like X… It helped soothe his pain that he had felt for over 20 minutes.💔He still wasn’t ok 20 minutes later which is when I concocted this possible reason.

We have no clue why the boy said it. We know how it impacted my boy. I wish I could scoop him up and keep him safe from all harm-physical and mental.

I’m going to do a short and boring video on YT on rejection sensitive dysphoria which I’m very sure Amarissa has. I just wish their brains allowed them to feel happy all the time. To not feel what they shouldn’t be feeling. (Even neutral comments or silence makes those with RSD feel negative about themselves.)

I wish they’d go through life feeling like how they feel in the videos below. I wish I could protect them from all worry and anguish. My non-speaker has been having a terrible time this week and we can’t tell why. Lots of screaming and crying, prolonged and saddening and tiring for me too. I wish I could magically make her able to express why she’s so miserable and then be able to fix it. Thursday she again did her “I’m going to break your neck. How dare you get down on your knees and try comfort me with deep pressure?” This after she’d already pushed me, pulled my hair so my neck snapped back, and tried to pick me up (to hurl me down?). Our helper is worried about how she will be when she is much taller at age ten because she’s already so tall now. This week is Had been mentally, emotionally and physically awful. Side effects of Bree treatment attempt included. I myself need more of the moments below!

Have a B lovely weekend

Shabbat shalom to those who keep Sabbath.