Author: Grace by any other name

God-lover

Presume Competence

Grace by any other nameLeave a comment

It’s a pity not even “specialists” get this fundamental truth. Not even the very same specialist who told us of a non- speaking, unable to type, 21 year old autistic who, they found out by mistake, COULD type- in Afrikaans. They’d been trying in the wrong language. Somehow, pathways got formed in a different way. She had learnt Afrikaans at school but because the family wasn’t Afrikaans they didn’t know her ability till they had an appointment with the specialist, who is Afrikaans.

The young lady took the phone and started typing whole sentences to her! Telling her to tell her parents she does understand them but just can’t tell them!

We need to stop trying to understand neurodivergence with our neurotypical brains! It doesn’t work! They often say that “autistics laugh or cry for no reason.” If I had known this, I’d have KNOWN my first son was autistic! He used to laugh and talk and talk to- nobody! I always assumed he had an angel that was talking to him. My undiagnosed four year old does the same. Whole conversations at top volume. Laughing, giggling, happy- with nobody.

My non speaking angel laughs! And it’s from the heart. Something has tickled her and I always wonder what she is thinking of when she suddenly bursts into laughter. An autism mom whose adult son maybe can produce two sentences a day and ONLY if asked a question or conversation is initiated by someone ELSE, said that he laughed at funny movies he was recalling in the moment. Isn’t that cool!? To experience the feeling so much that even the memory provokes deep laughter as joy? Wouldn’t it be cool if we too could recapture joyful or funny or happy moments in that manner, feel them wholeheartedly?

My friend, A, is imperfect. Just like me! I’ve dumped her, returned, complained about her, rebuked, laughed. But we grow together. And one area I have mentioned is one in which both of us felt great ire and I don’t know how much time she’d even spent with my girl at that point! I think it was probably ..not yet! I don’t think she’d met her.

But she knew. She knew the dire predictions of the neurologist that implied that our girl was, and would remain, a walking ‘vegetable’ were false. She hated that she assigned stereotypical traits to our daughter- like saying that she liked a certain gluten-free teething biscuit because of its colour when we had very specifically told her that she didn’t like certain flavours things at the time!😡Autism doesn’t make you one dimensional or unreasoning. It was DEEPER than appearance. We knew it because her bottles hide colour but do not hide taste. And she had definite juice preferences too- which we HAD told the neurologist. And like any proud mom, A was ANGRY on our girl’s behalf. “How dare anyone try to limit this angel!?”

People see limits. People see “not normal, senseless.” We wonder why. People see, “Doesn’t play appropriately.” We see logic, planning and reasoning.

Don’t limit our children. And don’t expect typical behaviour! Just because she doesn’t answer questions, doesn’t mean she doesn’t know the answer. I’ll point at something without asking, hoping she will speak..she doesn’t. But I won’t give up. I’ll ask her what it is- no answer. But I won’t give you. I’ll ask a leading question, “This is a ..?” And most times she will not reply.

But at random times, she will speak and I will know that she has learnt. Eg. Letters of the alphabet. She doesn’t name them when they come up on the TV screen anymore. Doesn’t mean she lost the ability to recognize them. She won’t answer when I point at them, or complete my sentence when I say, “This is a…” But she knows.

And she is VERY loud about it when she finally expresses it!❤️

We hung this up on Dec 27 for my now nine year old. She wanted them brought down and was NOT happy. But as soon as I brought her the letters down! She would pick one up and yell, “D! D!” It was lovely. She knows. Silence doesn’t mean she’s not taking information in. And thanks to my eight year old’s diagnosed auditory processing disorder which I see on my very talkative twin, I have shortened my sentences for my non talking one too. And wait a while for her to hear, process, and picture what I mean, then rephrase just in case.

(Her twin frequently says “huh?” when you speak. It’s not that she didn’t hear. She did HEAR but her brain hasn’t heard the words and MEANING in the SOUND coming out our mouths. It’s a very crazy household I live in. )

One day, I know she will find a way to show me more of what’s in her head. Because trust me my friend, she ain’t no walking vegetable. She’s a super star!

Vegetables don’t leave everyone else watching songs to go build.

Healing Through Stories

Grace by any other nameLeave a comment

I have nobody in my shoes. And the one friend who is very adept at putting herself in my shoes is always “very busy” so by the time she has responded and put herself in my shoes, I’ve got a whole new pair of shoes on!🙃

So, I will be doing a video sometime soon on going no contact with my birth family. How unnatural that is. All around me, my friends had these awesome mothers. Mothers who mothered ME when I visited them. Parents I thought and KNEW I deserved. But..it’s time to end the cycle of pain. And I’ll lay it out via video. And why? Well, I think you’ve read a bit of why, but the why I’m referring to is, “Why a video?”

I heal through the stories of others. There’s a man who said one needs to have a qualified professional guide them but many comments stated how they can’t afford it, or more worrying for me with my back pain that would be worsened by sitting through counseling, there are no trauma qualified counselors in their areas anyway. Or they try, but the counselor /therapist tells them to “make peace with” their toxic relatives, ‘forgive them’ and KEEP EXPOSING themselves to the trauma.

I’m not going to waste money and time and health to potentially sit through someone ELSE who will invalidate my pain. I get enough of that for free! I am learning more and more to not share with others because unlike that one person in the above paragraph, through no fault of their own, people can’t read nuances. Or don’t wonder about the impact something has on your mental health. For example, let’s pretend I’ve told you that my favourite aunt just ranted and raved and swore at me. And you just say, “Wow, so much for her being a Christian.” But never dive into, “What!? So all these years she has been fake!? Oh no. Do you feel betrayed? How did you feel?? I can’t imagine how I’d feel if someone I loved turned on me like that when I’ve done nothing to deserve it.”

Or I tell you, “I have to accept that I will never have a father. I kept hoping and waiting.”

And get..no response.

I can’t put into words how silence is violence.

And so how will I heal? By telling MY story. I set up my channel to inform and to help. And the help I received this morning was from others’ videos. By helping whoever might come across it in the future, I will help myself.

By expressing myself fully, I will heal myself by taking the power into my hands- there’s also violence in this cultural notion of “don’t tell people what’s happening in the family.” It’s usually said by the people most harmful and hurtful. Usually said to the victim of their toxicity. Nope. I will say what I want!

By not waiting for a “I can’t imagine the disappointment and hurt you’re feeling” that you’d expect from someone you’ve unburdened yourself to, I save myself the pain of invalidation. A camera is just recording. I don’t expect a verbal or written hug from it.

Win-win. Someone else might weep when they come across my experience that mirrors theirs as I wept earlier on today. Weeping is cathartic. You finally allow yourself to start the mourning process. And nobody will give me an end date to mourning, just like I don’t give anyone a timeline to end their own mourning.

We were a very close knit, (and I THOUGHT) loving family all believing in the same God and wanting the same for each other. I was wrong. To finally realise that I was wrong, that I truly am just something to be USED..not a human to LOVE, is …You’ll find out later. AFTER I change my number…😝

This Would be a Very Boring Book

Grace by any other nameLeave a comment

There are no big highs! There are no flashes of hope, no good news, no sudden surprises…There is no family gathering no to make the author ‘feel’ better. Instead, the one blood relative I told always forgets that I said anything was wrong. There’s no big church drive to help out…

There’s just..silence.

There’s no meticulous healing, no progress. It’s all just a hard, hard slog. There’s no sudden, “Oh!! I’m so excited! My children: have defied all odds and are…”

This is truly a very boring diary/journal of chronic illness of all sorts. Of ‘incurable’ neurodivergence. Of hard times.

Where are we?

My cousin (in law) in a different province sent a message asking if “we are winning” the infected finger battle. Not yet, I’ve now done two full rounds of antibiotic and all I have to show for it is an invisibly sore tummy, a lack of good bacteria in my gut, and less money in the bank.

Oh, and a possible NEW infection two fingers away from the original one. That red area is painful. And raised. Exactly how the other began. I’ve started salting it. I don’t know how far we will go with that.

So. The year is coming to an end. I’ll have had a grand total of EIGHT injections aimed at slowing AS down. After a whole 12 months of diagnosis…A mere total of eight weeks. A useless eight weeks as it wasn’t even consecutive weeks.

We have children who I believe have bit their vision therapy ceiling. I know I haven’t touched on it. I don’t know if any reader even has any children with visual processing problems, but here’s my update anyway.

We aren’t really moving UP much. And also, when I was reading how to introvert their very slow processing speed, it was mentioned that it CAN improve, IF there’s no cognitive disability. Ie. IF they aren’t intrinsically intellectually impaired. If they are…I can try but won’t get far. And that’s what I’m seeing with vision therapy. Their brains aren’t ready to keep progressing, even though I’ve added extra time for practice of previous exercises. This can be completed by weekly exercise and I chose every second week. And took breaks for my surgery and just because I knew they weren’t ready to go up a step.

As is typical for autism, they are struggling with left and right. And we are at a point where they are meant to be practicing that. But it’s not sticking. It’s like my nine year old angel who still can’t count to 30.

We are stuck.

Everything is stuck.

My body, their brains… I don’t even know what to hope for. Where to go. There’s no’ therapy’ to force your brain to cooperate. And vision therapy requires a cooperative brain. If I see it’s frustrating them, I’ll quit for a while.

It’s a scary time. Infections that aren’t leaving. A huge AS flare that began yesterday. Children’s problems that can’t be helped.

I feel stuck. I wish I could make things easier for all of us.

Heaven, I need a hug.

Connection and Accomplishments

Grace by any other nameLeave a comment

What have I accomplished today?

Trying to keep my hand elevated. Watching the redness return that my rheumatologist had said must be gone before I inject again, my cuticle slowly draw up away from my nail, more of it with each passing day, I was going to be honest about how I feel today.

I’d had a serious question on my mind earlier on when I lay down in agony after only managing to clean two rooms -a bathroom and a bedroom. And having already begun my AS exercises in excruciating pain by 6:13am, unable to continue.

It was off putting. All these “Merry Xmas” messages from people I wouldn’t expect them to come from. People who didn’t care to think that it would be possible that I was feeling anything but happy as I contemplated the question I allude to above. People who didn’t have the courtesy to ask, “Hey, what kind of a day is it for you? How’s the AS treating you today?”

“For me, is there even a difference between quality of life and quantity of life?” was what I asked myself as I soaked my throbbing finger. It’s usually a question asked when treatment impacts the dying patient even worse than the disease being treated, but knowing that the treatment is keeping them alive for a just a bit longer. But what about me? I have no real quality of life. I am in pain, I can’t use my hands, I can’t iron the mountains of ironing (Ironing Lady is shut, for obvious reasons.) I probably shouldn’t have even hung the many loads yesterday. I don’t have any AS treatment going on, so I can’t say if the impacts are affecting my quality of life.

It was going to be a post along those lines. But it won’t be. There’s no point.

Instead, I’ll post about how during quiet time, I went to my usually non-speaking girl’s room and just lay down next to her. She hugged my face, smiled, grinned…I took her leg and did some deep compressions around her joints, counting to ten as I moved up to the next joint. Then she said, “Eleven…” and looked at me out of the corner of one eye.

I said, “Twelve.” She continued onto 13..and so we took turns till she eventually shouted “Twenny!” Then she covered me with her sleep sack. As she lined her book and puzzle next to each other, she went to the wardrobe and took another puzzle out and lined it up next to the first puzzle, and said, “THREE!”

Unlike her bigger brother, there was no need to count one at a time. She just shouted the correct number. Then she added two more items and shouted, “Five!”

I hasten to add something I’ve seen in one person. Speech production isn’t a sign that autism is “going away” or that she’s “getting better” and soon all will be perfectly ‘normal.’ It shows that she’s growing up, much like when a baby goes from crawling to walking. It’s a developmental milestone. But given how she recently spent a few days saying NOTHING, it’s not a sign of ‘progress’ in the sense of knowing that tomorrow she will repeat the counting.

But it was LOVELY when she called me “Mommy shark” yesterday. I hope she does so again one day.

And that’s what I’ll end on. Loving my children, being a good example, wishing I could care for them properly, but thankful for our moments of connection.

I Don’t Want “Hope”

Grace by any other nameLeave a comment

It’s well-meaning, I know it is. But one autistic child’s journey won’t be like my child’s journey. It’s like telling me, “You’ll be ok” when you ask how I am and I tell you it’s not going great.

Someone very well-meaning sent an article about a child who started talking at age 8 and told me it would give me hope. But it won’t. Because I know of many autistic adults who even in their late adulthood are still challenging, unable to be ‘still’ and don’t talk or even communicate in any understandable way.

Those articles don’t give me hope when I know the reality and the possibilities. They certainly don’t help me today when life is extremely challenging and it’s taking everything out of me to stay upright and to keep my smile right NOW. I can’t afford to even think about tomorrow when today’s mountain is very high and I am yet to climb it.

Well-meaning but meaningless. My own life has shown me that things do get worse. I’ve learnt to stop hoping for better, because better never comes. How many times did we hope that 2023 would bring no surgeries but instead I ended up with two and one already seeming to be needing to be re- done? (Symptoms seem to be starting up again. And it’s not just me being crazy, the urologist only wanted to see me a month after surgery to check that I was ‘still’ ok or if I needed more help.)

I can’t find hope in some strange child’s improvement when I know of many adults who didn’t ever improve. That would be..not me. I’ve seen worse. It can also go that way.

I just need my hand held today. I just need to know today’s heartaches are seen. That’s all I need.

Only God can make promises or offer hope of improvement, because only HE can fulfill those promises and make those hopes reality.

I Sense Trouble

Grace by any other name1 Comment

Firstly, finger is still an Enbrel no-go. My rheumatologist scheduled an emergency appointment yesterday and did an ultrasound on my finger and the infection is still there. (I knew that anyway because I still am in pain and it’s WHY she asked to see me.) She gave me a script for antibiotics and for another full dose in case the infection gets worse or recurs. She’s hoping I’ll be able to inject next Wednesday.

Trouble…I noticed that my sinuses were acting up maybe two days ago. Throat got croaky when talking, had to clear it, and had to swallow drainage yesterday. Today I wake up and I’m wheezing or crackling when I breathe. And there’s definite drainage.

I have more of the super sinus antibiotic I was given when the last infection took to long to clear and my lungs got impacted. And an appointment with my pulmonologist set for January 24. Let’s hope I don’t need to find another one before then. 🙏🏾

All in all, I’m not happy. I sense trouble and I’m already in trouble as it is! Last thing I need is to get sick! I’m now REALLY paranoid of strange places. My children have been so much healthier with our fewer church visits. But I’m still going to doctors, going for blood tests, standing in pharmacy queues with coughing babies and parents…And I don’t WANT Yet Another Reason to delay treatment.

This was truly just s as health update. I have no pearls of wisdom. No, “But THIS thing is going well, it’s not ALL bad…” Because yes, even though the other thing might be going well. THIS is not. And THIS (my trials) is what the blog is about.

I’m now using laser light therapy and salt soaks and keeping my hand elevated as much as possible. I will work on my sinuses too and hope I catch it before it gets worse…Maybe I DO have chronic sinusitis as the pulmonologist feared. Who knows?

Definitely not me.🤷🏽‍♀️

ETA: I thought I’d try more natural remedies but it’s been too many days now. I’ll fill the script. I’d hesitated and hadn’t done so yesterday.

Now Injection This Week

Grace by any other nameLeave a comment

I still haven’t recovered from the infection to the point where the rheumatologist thinks it would be safe to unleash an immunosuppressant on me. “No redness and no swelling.”

Instead, I have white. The hole is no longer producing the stuff you’d assume would cause the current whiteness. Pus. I hate the word. Sorry for grossing you out! The joke itself has not closed up.

And I definitely do not have “no swelling.”

In fact, pain has increased.

Normal finger

Not so normal finger.

I really woke up hoping for the best today. Hoping to inject. Looking FORWARD to the stomach pain and bloating.

I always understood intellectually the cancer survivors who’d write how distressed they were that their white blood cells weren’t a high enough number for more chemo. A count reduced by the very chemo! Thats where I am. Enbrel has probably suppressed my ability to fight. But I desperately want it so we can know the way forward sooner rather than later.

I’m disappointed. Sad. Tired. I want to be pain free. I don’t want to get up from sitting on the toilet, or stand up straight from bending over the bin and scream from pain from those movements as what happened today. (Hopefully that’s the last time!)

I just want a bit of hope. Please 🙏🏾

What if it’s Family?

Grace by any other name2 Comments

I will set my face against anyone who turns to mediums and spiritists to prostitute themselves by following them, and I will cut them off from their people. Consecrate yourselves and be holy,because I am the Lord your God. Lev 20:6,7

I wish I was an island. Or let me re-start, family is sometimes more trouble than safe space or safe place. I wish I could hide…

I have been and always will be a Christian. I will die with God, even if He takes me way too early (Ie. When my children aren’t able to survive without me.) I have read the Bible, I believe that was prophesied happened (The Roman Church and the Protestant martyrs) and more is yet to come. I believe the prophecies of Isaiah were fulfilled in Jesus. And I believe the saints who go to heaven when He returns are those who keep the commandments of God (Rev 14:12), not those who disobey them. And His commandments are broader than just the literal wording on the two tablets of stone.

I believe, will not doubt and have no interest in debating.

Unfortunately, others don’t seem to get that. How often I’ve sent messages sent by relatives to my dear friend. Messages I did nothing to provoke. I blog about my Christianity. I post about it on my status where these relatives are ABSENT, and have never spoken a word to them about my beliefs because I know how far from God their own take them.

Sadly, my silence seems to mean that I’m open. And because they are older and we are African, it is extremely difficult to tell them to leave me alone just as I have left THEM alone. Or to tell them to stop wasting their time and my space sending me articles on why the Bible isn’t real, telling me to meditate to spiritualistic music that taps into Satan. (Basically.)

Yesterday was one of the dumb ones. Sometimes, I don’t bother reading or listening, but I had been hoping that things had changed, that the aim of communication was NOT to remove my hold from God. I was wrong. And funnily enough, single thing that was meant to change my beliefs only cemented them further!

I don’t want to offend those who believe that the dead communicate with them, so if you do, now is the time to stop reading. Maybe tomorrow I’ll give you a health update.

But wow, it was the dumbest video I’ve ever seen. The speaker was saying we will know who we are by asking some long ago dead people who THEY were. I am bigger than my people’s past. I have choice, I have will, I create my own present and future and I do so with the One Who created those dead guys.

Bloodlines also matter regarding who to marry. Well, the blood of Christ is what matters to me. I don’t care what bloodline someone has if they are evil, immature, rude, aggressive or abusive. I want cultured, kind, and someone in pursuit of holiness. And…I’m already married! So that’s a bit late now anyway!

My choice of career or pastime is to come from what some dead guy liked doing. So, if he was a hunter…? Am I meant to go kill animals now? What about my having agency over who I become? What about freedom to follow my own dreams?

I’ve simplified the points massively. But at the end of it all is this. I will not make the mistake of hoping people have changed their beliefs, no more hoping for the best. I know now that others are heavily steeped in their ancestor worship. I worship God Himself. And I will stick to reading the Bible. I will stick to learning Who HE was, what He liked doing, and emulating HIM, the only One Who knew me before I existed, before those dead guys existed, and loved me anyway.

Let no one be found among you who sacrifices their son or daughter in the fire, who practices divination or sorcery, interprets omens, engages in witchcraft, or casts spells, or who is a medium or spiritist or who consults the dead. Anyone who does these things is detestable to the Lord; because of these same detestable practices the Lordyour God will drive out those nations before you. You must be blameless before the Lord your God.

Deut 18:10-14

Digging into the lives of dead people to get guidance for my life is the same as the two scriptures I’ve posted. And that same Bible tells me to stay away from those who work works He does not want. So what do you do if it’s family? Block WhatsApp? Thats how all these beliefs are shared with me. I guess I’ll just not read. And delete as soon as they arrive. I know in Whom I have believed. And He is enough.

So…

Grace by any other nameLeave a comment

Antibiotics finished.

Infection still around.

Definitely no injection tomorrow as was meant to happen.

Slightly desperate times. But at least my whole hand is not sore anymore and though worse than the day I went to the GP, slightly better.

Maybe Friday?

Please this week…

The pharmacy guys phoned to ask if they should order my last bkx of Enbrel (the script is for three months at a time.) I still have four injections in my fridge and surgeon and anesthetist’s bills to pay, so..no.

I’ll wait.

Hope.

Watch

Pray.

And beg for a chance to wage war against this disease.