Tag: ADHD South Africa

A Book About My Ten Year Old

Grace by any other name2 Comments

Ok, it’s not REALLY a book written about her. But it could have been! It’s by a foster carer who fostered a little girl who was also ten years old, back in 1989. This poor girl had been sent away by her biological mother! The mother said she was mischievous, naughty, always trying to irritate people and “too much to handle.” And like all the other foster carers who would come to take the child and then send her away, added to these complaints was that she irritated other children in the family, she ENJOYED BEING TROUBLESOME.

And so, this poor girl, chased away because she was unbearable, ended up with a couple that usually took on ‘challenging teenagers.’ And every.single.thing.she.did, reminded me of Amarissa. Even before they finally got an appointment to get her assessed, I knew. When the schools kept suspending her for being disruptive, not focusing and even to this last set of foster carers for whom she was hard to deal with, it was clear.

She had ADHD. And sadly, there was no medication back then. But the child, the child was so relieved! She knew she hadn’t been disobedient, clumsy, unthinking just to irritate. She was excited, “I have a ‘thing!’ It’s not me! It’s my brain! I have a ‘thing!’”

Sadly, instead of this showing the mom that the poor girl wasn’t just being obtuse on purpose, she then said, “See? I knew there was something wrong with her. I don’t want her back.”

This girl was like mine in so many ways. Climbing up high without a care. Forgetting and being distracted. Fidgeting and always moving around. Finding school work boring. And like my girl, the foster couple felt that though she was extremely hard work, she was a lovely girl who made your heart warm.

Indeed!

I’ve often thought of how much abuse there is in baby and children’s homes here in South Africa, and how they’d have treated a child like my ten year old. I didn’t ever think that she might have been sent away multiple times. They were similar even in not having bladder control during the day!

But she was lovable. How sad that the behaviours became larger than the child and her need for stability and love; the need for a healthy m self confidence instead of being told she’s being purposefully naughty. The number of times she had to explain that she didn’t do her homework not because she was lazy, but she honestly forgot there WAS homework.

My child might have suffered a lot.

She’s climbed to the top of trees. I gave up earlier this morning when she didn’t understand WHY we thought it was unsafe and crazy. As long as her little sister knew not to copy, I knew we’d have no problems.

God bless all the different types of parents who love children others deem unlovable.

I know I complained to others that our girl’s foster mother was cold when we met the day our girl was coming to join our family. Only when I ignored that and kept telling her over the weeks and months how we were settling in with our girl and just being kind despite the negative vibe I felt, did I realise the love she has for these babies. It was when she said she was feeling very down and worried because the new parents of the baby she had given over weren’t very warm and loving to the baby so she was scared they’d not love her, that’s when I realised it was grief making her cold. She was trying to stop from being sad. She struggled a lot when babies had to leave. Sometimes she had a good feeling and sometimes not, but she always mourned the baby. Thankfully, she didn’t have a negative vibe from us, it was pure grief.😄

Again, God bless all the different types of women who MOTHER the innocent but challenging. So today, I am thankful for the many mothers in my groups whose children are like mine but have never considered giving them away. Parents whose children are extremely violent and hurt them badly, leaving scars. But still don’t even consider placing the child in foster care. Now that I know people actually do that, that it’s not always about the ability to feed the child etc ONLY, I salute all loving parents of challenging children who instead of wishing the child away, only wish for the hard things to go away.

Even this! Throwing things out the window when told to tidy up. (Now returning them after being caught!) Just like the girl in the book!🤦🏾‍♀️

The child stayed in foster care and even as an adult, always visited the one family that saw her heart, not ONLY her behaviours.❤️

We Did It!

Grace by any other name1 Comment

All of us did it! Every sister who asked almost every single day how the day went, if there was any improvement in the children’s challenging behaviour, if I was able to sleep (No), if the twins slept (We’ve double diapered Reo and she’s been quiet. And so, her sister has also stayed asleep.) Plus she’s on meds that help with sleep. Oh yes, that.

Let’s get to that first. Last Monday, I took Twin A, Naynay aka Neilo aka Oreneile for an assessment. I’d filled in the Connor’s questionnaire as her teacher and my husband did the “parent” one. I also did the M-Chat assessment. I added all the observations of autistic behaviour I’ve made over the years, and emphasised the current challenges- I can’t teach because she interrupts me, she thinks she’s also the teacher and takes over, her violence that comes extremely unexpectedly when nobody is even doing anything that should cause harm or she has not asked for anything we have denied… Her irregular speech errors, “What are you going?” instead of, “ Where are you going?” And, “Where you went?” And, “What are you doing a?” Or, “What are you doing the?”

The extreme hyperactivity and inability to focus. Insisting on doing formal school work (We believe in delayed academics), but saying the work is boring and moving pages ahead, or doing her own thing like writing letters on a page teaching her letter recognition when nobody told her to. Her taking over and teaching ME… And her interrupting her siblings as they learn.

I mentioned the excessive role playing. She don’t play pretend, she becomes a character she has learnt about and is that person in her head. “I don’t want to wear a top. Pharaoh doesn’t wear one!”

That day, she decided she was an elephant. I didn’t even try talk her out of it. It was (is) part of her constellation of symptoms, after all! And after her head was messed, weight taken (She hasn’t ever seen him. She doesn’t get doctor sick, she goes big/breaking her elbow jumping on her bed and then her arm the following test jumping on a trampoline and falling off both times.) She has horribly changing moods-laying out and hurting others for no discernible reason after having just laughed with them. Very sudden and distressing.

I also mentioned her prodigious memory. She had the memory of an elephant!! Can be so caring. She kisses my back and prays for me. She tells me to rest. She tells me to lock my bedroom door so her more violent sister doesn’t come pull me everywhere and anywhere, stacking me when I can’t give her what she wants.

After an hour observation, talking to her, talking to me, witnessing her busy-ness and sudden requests to wash her very clean hands, everything showed that she indeed she has autism, ADHD, extreme pathological avoidance. I was shaken by the word ‘extreme.’ I guess in so used to everything being too much that I didn’t realise it really was too much! Every single child is on the extreme when it comes to behavioral challenges that leave me so tired and alone that I b never paused to think, “Why is out PDA so much worse than it could be?” It’s more the older two who exasperate me because I know things could be better, they would be helpful if they were neurotypical and their actual age developmentally. Why suck ink and spread it everywhere on the floor, on your vest… Why throw clothes out the window and make awful messes every single hour?? Why resist so much? Why the screaming? Why does their sister pull only me so much and.. and why can’t I ever REST???”

We’ve begun on a very small dose of ADHD meds and mood stabilizer which also happens to boost sleep. Both girls are on melatonin, SleepVance but we were still struggling. Waking up for HOURS and being loud about it.😆 She’s also on allergy meds as us her minimal talking twin and minimal talker is on another med that send to help with sleep as well. We shall see how to shift things around. So far, no positive change in her behavior.

Back to us! We did it! Yesterday was injection day again. My regular commenter who once sent money even keeps track of the days as the injection day draws in. I’m the one sticking the needle in, but they are the ones who show care and concern every single day. The one who listens to my cries when in do open up. We did it! Four straight months-NO STOPPING!!! )With Enbrel I never even reached two months!

I don’t know yet if it’s starting to work. This just could be the end of a flare and it will become extremely bad again. The fatigue (extreme exhaustion and wanting to lie down began again yesterday after a few days of my having to remind myself to calm down because doing too much would trigger n more pain the next day.) But.. I had a better week where I didn’t beg to die and pain meds actually did reduce the pain a bit. But since yesterday morning, that has changed. Still not bad enough to wish to die though, so I’m pretty chuffed for now. Praying I get better. We got to a whole four months! Thank God for that privilege! I hope this is the treatment that shows this all down and helps my lungs and kidneys too.🙏🏾❤️

Prompted by a comment

Grace by any other name1 Comment

How are things going with my not very predictable, and very physical daughter? This post was prompted by a father of an autistic child who commented under the post in which I spoke snot my daughter hitting me and hurting me.

Sometimes good, sometimes bad. She has no real texture she prefers anymore. She will eat porridge-y Pronutro just fine, and oats. And sometimes..not. Today was one of those “Not oats” days. She came into the house, saw the oats on their table and came storming to the kitchen yelling angrily. I knew what that meant. This time poor Micaiah who happened to come into the kitchen got caught in the crossfire for the first time (in my presence. ) I didn’t know how he’d react when I was telling her to be kind so didn’t even have a chance to warn him to rather stay away instead of getting close. But, it ended ok. Well, it ended ok for him. He left and then when I replaced the oats with original flavour Pronutro-which she keeps gesturing for-she knocked the bowl out my hand and cereal went flying.

I’m sorry the camera glitches so you can’t see it all.

This is what life is like here. Not ALL days, but MANY days. I will need someone to be nanny who understands the unpredictability but will remain calm under fire. I think of a baby who was hired by a lady in a South African homeschool group. She took a month holiday and went home and they had a sub. She wrote to tell the mom that she misses her autistic son who is so loving despite how often he hits her. I’ll need someone like that unless I miraculously find a very affordable therapeutic centre for her. If we lived somewhere like in the States, I’d definitely have an aide for her and send her to one of their special schools. But, I’m here, not there. And we have nothing here. The government only even starts putting our children on their two year plus special school waiting list after your child turns seven! AFTER. And the waiting list is long! Can even be longer than two years. It’s BAD. I really don’t know what to do and am constantly stressed to the max. I’m struggling.

Then we come to the middle two. I’m meant to brush their teeth. And I’m starting to struggle there too. Just folding laundry has been tiring and difficult. My arms have been giving up on me and feeling strain. This week, it’s gotten even worse. I can’t even fold ONE SHEET! I have to put it down half way through the process. One sheet! I was telling my husband that I wish he could feel what I’m feeling. I wish everyone who expects too much of me could feel what I’m feeling too.

I really DO need to stop working.

It became evident that what I’ve been wanting to do is truly necessary (finding them educational and therapeutic external centers) when I couldn’t even brush one child’s teeth without stopping in pain. One set of teeth! But my arms got tired and were extremely sore. Just brushing my son’s teeth so I had to stop and rest a while. What kind of a life is that? Thats the fatigue we mean. It stops us moving. It makes us wonder if we won’t collapse. It is overwhelming.

I need a second mother for my children. A kind, honest, gentle, able to drive, patient, mother to teach. I don’t think they make others like me. I haven’t even met anyone who doesn’t lose their temper at their own children or relatives. How much more when dealing with mine?

Clothes and shoes constantly left outside overnight to get rained on, or for heavy dew to fall on. Socks getting lost by my mine year old daughter. Underwear thrown out the window by one of the middle two. Daughter still making holes in her clothes. Eight year old throwing food down the toilet. Both extremely easily distracted. I’ll tell my son to go wash his face and he will stop to ask me why babies use pacifiers instead of doing so. Then he will forget I ever told him to go. Or my daughter will go get undressed but you’ll find her sitting down with only one sleeve off, reading a book.

I need someone like Job.

I need them NOW. So yes, it’s been up and down. I’ve managed to divert some anger and get my unpredictable girl her to be less violent. I’ve verbalised her feelings but told her straight after that we are kind and gentle and hug each other, we don’t push. Sometimes she hears and then squeezes me for a hug. Sometimes not.

Homeschooling while terrible unwell is another level of torture. I can’t even finish the next day’s lesson and therapy planning as I’m so in pain by 20:30. Hoping for a breakthrough. And a break.

In the meantime, I grasp and clutch to myself every comedic moment and every insane second. Like my four year daughter who only partially listens when I’m teaching -doing what I tell her, but also planning her own thing. Above, she decided on her own that while I’m reading to her, she’d suddenly draw two C’s. And she did. I’ve never had a student like her before. She marches to the beat of her own drum in every single area of her life. It’s funny. It’s tiring. It’s frustrating when her drum beat is out of sync with the symphony I’m trying to conduct. When she wants to do something totally out of line with what she’s meant to do. And she does most of it, with a smile and easy confidence that her wish is not disobedient nor distracting.. and never negative. So what if she can’t say without stopping to want a very specific book we can’t find and she won’t eat until we find it and put it next to her? So what if she sometimes even coughs and splutters a because she’s chewing and singing at the same time so some food goes down the wrong pipe? She will be warned by me. But she continues and then with watery eyes say, “Oh, I’m choking!” 😩🫣Her not very talkative sister does the same too. She will jump and spin with food in her mouth and sometimes cough and splutter when the food goes down the wrong pipe. I don’t know which is worse! Their extreme activity instead of eating- wondering up and down and going around to find toys and books. Or the middle two and how they will take an hour and still not finish a small bowl of food. And it’s not because of the ADHD meds that reduce appetite. They do that even without the meds. To feed them less would be to under feed them. But to make them sit for three hours would mean I don’t get time to teach. So I end up telling them stop and learn then eat again after a short school lesson.

Told you I need a breakthrough.. and a break. The mind can only take so much constant stress before it breaks. And that’s a mind in a healthy body. Even healthy parents of even one neurodivergent child can’t cope if the child is challenging. And I understand it. I need a break. We all need respite. We all need hope and help.

Uncontrollable

Grace by any other name1 Comment

I told my friend that my worry with my angel is that she will fidget with the dressing. The very next day, she’d scribbled on it with pen. She claimed it had been itchy. Thankfully I saw no red ink directly over the wound, but it was worrying.

Thursday, it had fully closed up. I put the dressing on to KEEP it safe and told her that if it was closed in the evening, she could finally bath the next day. That same afternoon, after days of the dressings always staying put, the dressing was now off the wound. I asked why she’d taken it off. She said it “just fell off.” Yeah right.

This is our worry as her parents and as her aunt (My friend who video calls them as much as she can.) We worry that her cognitive issues and her behaviours will slow down her healing.

And what do you know? Friday morning I arrive at the hospital early for my lung CT scan and I phoned home to check how the little ones were as I left before they’d woken up. The wound was now open. And I saw when I got home to dress it after they put on a normal plaster as a covering but no cleaning, that it’s back to oozing something. It had moved to blood and then had remained dry. Now we have a setback.

On Monday, the surgeon warned her that the wound NEEDS to close up and if she damages it, she slows down healing terribly as there’s not much blood flow to that area of the leg. And that if it stays open, the higher the chance of infection again. Plus..she can’t bath till it’s closed- my other issue with it! And I have to keep cleaning it, dressing it sometimes twice a day. And guys, that puts extra strain on me- the bending over. It needs to heal.

Meanwhile, we have another issue.

https://www.youtube.com/watch?v=bddqnnyD6c0

That’s the video version but long story short, her brother has an infection and I need to sort him out twice a day and medicate. As I was doing his evening dressing yesterday, I caught my girl poking into the wound, and then telling me that her leg is sore. (She had stopped complaining of pain.) She didn’t know I’d seen her fiddling with her knee. So I reminded her that it’s a pity she’s not healing because now there are fun things she’s missing out on. (My hope being that the thought of the things she’s missing out on will overcome her huge attention seeking behaviour.)

Her dad went to go chat with her sick brother later, and he too saw her using an item to poke at her knee. I can’t recall if he said pen or what. But she’s at it. Just as we feared. She is sabotaging her own health and she’s only nine years old.

Tell me it gets better. Tell me these kinds of pathologies change, improve…I don’t know anyone who has had the prenatal history she has had. Well, I know the ones who had physical deformities and intellectual disabilities. But not this constellation of issues. It’s too much. The day time urine and night time bed wetting, the learning disorders, the struggles with academics, the self harming. All in one child whose only current label is “ADHD.”

If you’re a Christian, please pray with me that her knee heals fully. You can even pray that her behavioural issues calm down too. Today it’s still open. And I will bribe her too. Tell her we will celebrate with her favourite treat when it closes up and remains closed for three days. I’ll do almost anything. As the other surgeon we saw in ER said, “We need to save her leg.”

And me? We’ve moved into February. I was meant to work on getting my facet block injections in January. But I needed to be sure we wouldn’t have post op appointments etc. Instead, we now have to solve my daughter’s other issue. Moving rib in her left side right at the bottom. Moving and causing lots of pain as it rubs against the bones- I think I mentioned this. I don’t think I’ll ever get those injections done. And it’s spooky! The doctor has never ever had a patient with moving rib cartilage before. He even called in his other associate and she too had never felt such a thing in her life. He doesn’t know the next step. I’m waiting for him to get back to us after he speaks to a cardio thoracic surgeon and to the surgeon who did her knee operation. If I hear nothing by midday on Monday, I’ll search for surgeons myself. But I’m scared we will need to operate. And ribs and surgery are a whole new ball game for my daughter. I’d really thought my children had escaped living my life of a childhood marred by sickness, pain and hospitalizations. It seems not.

And I am sad.

ADHD is Annoying

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So says my eight year old ADHDer. I am pretty sure I’ve mentioned how she is very hard on herself. Extremely hard on herself about her perceived weaknesses. From ADHD itself and her forgetfulness, to the common co-morbidities that tend to come with ADHD-the learning disabilities or challenges, they all combine to make her feel like a failure. I’m one of those relaxed parents. It’s not about me. There’s a lady I know whose child was obviously neurodiverse in some way. She recently had the child assessed because of the struggles she was having when helping the child with homework. In her words, “I am intelligent. I got frustrated thinking I have a child who’s slow! Helping her was just too frustrating.”

I’m definitely not dumb, but my biological son’s being behind by a year doesn’t reflect on me. I just taught him according to his ability. No skin off my nose! And same with my other children. Their (dis)abilities are about THEM. “How can I help THEM do better? Is it possible? If not, what can we do instead? How do I make this less stressful for them so they don’t feel stupid?”

And so, I changed curriculum to one I’d seen recommended by Christian parents of neurodiverse children. And I started a grade level below where she’d been struggling, working as slowly as possible, and ignoring or turning a blind eye to the problem areas -such as number reversals like the ones below.

She’s eight years old. We use computers s lot these days. And…She’s eight. We will trace every now and then, create the numbers and letters out of play dough, and one day, it will click. Why stress her when I know the number she is trying to write?

Slightly tangential but relevant. I thanked a friend today for how she approaches parenting and what she shares with me. She too is an adoptive mom. Her children are neurotypical and participate a host of sports and dance and do well! Yet what she focuses on is worrying about her son playing rugby and getting hurt-not on whether the team won or not. She worries about her daughter being tired and over worked. HOW she does in her dance competitions doesn’t matter to her. The prizes aren’t important. She just enjoys knowing her children are happy. I can definitely enjoy her updates about her children.

On the other hand, you have the mother also of neurotypical children who’s always posting photos of her “beautiful” children taking part in this and that, their amazing achievements and the awards and prizes they got. For a mom like me, even before I had differently abled children, I couldn’t get behind such parents. I remember a relative telling me their child came first in their class. My immediate thought was to retort, “So did mine.”🤣 (We are homeschoolers, so…😉)

My first two children were academic achievers. Even now they aren’t too shabby, they got one C for their IGCSE exams and the rest were A and my son got one A*. But I don’t boast about their achievements and never did. I taught them to read at a very early age. By age three and four, both could read three letter and four letter words. By five and six, they could read adult texts fluently. My sister-in-law used to visit, and she would take them to the aquarium and to the museum and when there were people around, ask my children to read the descriptions and information written next to the exhibits, just to shock and surprise people, who would invariably ask, “They can read!?? How old are they!?”

But I never recorded them reading. I never sent it to anyone. I never told anyone. Because my first aim in educating them is to have them become kind and helpful citizens, not amazing academics.

And so, with that mindset, this poor mom and her multiple posts about her children’s achievements was always going to do down like a lead balloon. Add the challenges I have with my neurodiverse children, and you have a mom who does not want to know. It hurts. It triggers a pain that goes deep. I hate that my children struggle. I hate that my daughter feels so bad about herself.

She asked me what the point is in doing a grade she understands when we will have to go up a level and she will flounder again. She had asked not to do Maths at all, because of her struggles. It took a lot to convince her to try. Even now, when counting in tens, whether looking at a number chart or not, she will say 80, 90, 20 even though she knows there’s a difference between 19 and 90. I just quietly drill, making sure I use the chart more so she sees it while saying it, and so I don’t have to correct her.

Yes, ADHD is annoying. The untidy room, the lost socks, the crazy wild movements that bump other children, the fidgeting that tears her clothes and pulls her hair out are annoying sometimes. But only she (and her teen sister who just doesn’t get it no matter how often I explain ADHD and give her videos to watch) feels annoyed by ADHD constantly.

I just feel a general sense of sadness, not annoyance. Last week she said she’ll never have a job. I asked why she would say that. She said she would be fired for forgetting things, and learning in university would be too hard for her anyway, so she wouldn’t even qualify for a job. I told her that there are different kinds of jobs. She could be a caregiver in a nursing or retirement home. But she then said she’d forget her duties. I told her she would write them down as she underwent training, and keep the notes with her. She would also see what other caregivers were doing and copy them. And if the elderly people could talk, they’d remind her too. And she would maybe even be able to explain to the boss that she has ADHD, and concessions would hopefully be made for her. Who knows?

I hope she will internalise it even though she doesn’t believe it right now.

“Mommy isn’t annoyed with my ADHD. She loves me and wants me to be happy.”