Author: Grace by any other name

God-lover

Light IN The Tunnel

Grace by any other nameLeave a comment

What I noticed yesterday when I shared my wonderful appointment with my new rheumatologist, is that only two people understood that it was good, but not everything I need. The other few tended to act as if we’d found a cure and everything will now be hunkydory.

Not at all.

There is no light at the end of my AS tunnel because there’s no end. There’s no cure. Treatments themselves are trial and error. Already, even before we even TRY to apply for me to get the meds -we’re already in agreement that I’ll need to get a loan- there’s one biologic that won’t be a possibility unless the TB my surgeon said he found inside my appendix, was not really TB but looked like it. Don’t ask me if he still has files from 2001!

But. I still had a great appointment with my new rheumy yesterday! Woohoo!

She was dismayed about the gastroenterologist. Of course chronic gastritis exists! Also, she didn’t understand why he refused to scope me anyway. According to her, if a patient asks for testing, they should provide it, even without a preexisting condition. So, she’s a winner there! She will organise a gastroscopy and colonoscopy with a different gastroenterologist.

She was also shocked by the dermatologist who told me my weird skin issues were a birthmark. I had not been born with them! She thinks they might be psoriasis. She said that once we move onto the (expensive) biologics, if they improve, then we will know for sure. In the meantime, she’s given me a six month script of anti-inflammatory ointment to put on it.

She spoke to me like an equal. Actually, she really cares about us, it’s like we patients are her children. She spoke about side effects, and agreed 100% with why I saw the gastroenterologist! She’s given me the mother of all stomach acid meds, and a daily anti inflammatory for now. But we definitely will need to move onto biologics. I’ll see her three months unless the anti inflammatory affects me, or the scope shows damage

The biggie! She confirmed my research (seeing my old rheumy doesn’t speak!) that all my health conditions are linked to AS. No, that’s not the biggie!

The biggie is that she went back to the very first MRI I had when I first went to the doctors telling them I was in extreme and increasing pain and needed help. This was in 2011. They told me there was nothing wrong and that the pain is because my core muscles are weak so I should see a biokineticist or physiotherapist.

She showed me the MRI. People, I wanted to cry. It was extremely emotional. I, with my untrained eye could see the damage that had occurred in my right SI joint. It was very clear, and so was the inflammation! How could they miss it?? The radiologist AND the doctor saw no thing -apparently! I could see it! My heart shattered into little pieces. All this time when I was crying over the years spent seeking answers, I had thought the MRI just wasn’t showing it at the time.

But it was.

The professionals who blamed ME for my suffering… The physiotherapist who only saw me twice and didn’t touch me, who made me feel like dog poop, dirty, disgusting. For nothing. It wasn’t my core Andy way, so I wasted time and money for nothing.

The nicer physiotherapist who told me my pain was because I wasn’t sashaying enough and needed to move my hips more. All that and more…Like the chiropractor who told me it’s because I carry a child on my hip. (Without asking if I even did.)

It was there in 2011. And as we looked at the January 2023 MRI that finally got me the diagnosis, we could clearly see how the passage of time has made things worse. The bone was jagged and misshaped, now it has been eroded too.

She also agreed with me that I need SI joint injections. Which the neurosurgeon said I didn’t! She cautioned that if any relief occurs, it might only be for a week, but it’s worth it. I can’t imagine a week of no pain in that hip.

She has also ordered specialized hip X-rays which I will have done before the ultrasound guided SI joint injections tomorrow.

We are on the right track! Not only did she agree that it was more than ok to stop the other meds I stopped, but she even spoke not only about my potential meds, but others’ too for other types of arthritis. was super talkative, very passionate, and gets that the pain is horrendous. She was even shocked that I had been exercising as I was!

I am extremely grateful I switched to her. If anyone in CT ever needs recommendations for rheumatologists, let me know! There are White patients who have yelled at doctors, saying they that they didn’t want a doctor of colour treating them, touching them, so be ‘warned’ that she’s Indian with a bindi on her forehead. She’s a rockstar!

Back to the fact that I’m in a tunnel that has no end. She emailed information through on AS. It included exercises to try slow the back from fusing into a hunchback. Breathing exercises to expand my rib cage to try prevent or show down the way it tends to not expand and causes breathing inabilities… And this is with treatment. There is no cure. It is progressive. All we are doing is reducing suffering and inflammation. And hopefully going to slow the disease down.

But, she is the light in the tunnel, and I’m grateful.

My Aunt

Grace by any other nameLeave a comment

I had a lovely aunt from my maternal side of the family. Gentle, soft-spoken but firm; loving and tender; suffering greatly from the loss of a husband, a daughter, then her son in law, leaving her grandson orphaned, she was love personified.

She was the only genuine mother figure I and my cousin’s wife (Cousin being son to a different maternal aunt) have had. But Covid-19 took her, and our world, our only taste of unconditional ‘parental’ love went with her.

She often used to phone me, just checking on me, on us. Not because she wanted to know how her sister was, but because she loved ME. She never complained, just stated facts when I asked how she was.

She wasn’t well. Bone pain, diabetes complications, heart problems, in and out of hospital, in and out of comas. She suffered terribly. She wished she was dead.

And so, when Covid-19 took her, it was truly bittersweet. Finally, she was free. Finally, she was NOT in pain. No more would her days be either “not too bad” or “awful.” There was no more of a life of “bad” to “worst ever.” But oh, how I miss her. And how saddened I was that she had to suffer before finally dying.

At the start of this year when I was still semi-active on my Facebook page, I shared that finally, after 12 years of trying to get a diagnosis and cure, I got one. Except the disease is incurable and progressive.

Some girl commented, “That’s sad. Oh well! At least you know what it is now!”

Seriously, if someone hasn’t asked you to find them a silver lining for their cloud, don’t do it. Don’t find one for them. Just sit with them in their bad news. In that moment, feel with them what they are telling you they are feeling. I wanted a diagnosis so the suffering would end! Here we are in April and nothing has changed! I just have a name for it now.

I’ve not ever had a ‘happy and healthy’ life. I don’t know anyone in my life who has been in my shoes. Born too early, I was born into suffering. My first ever childhood memory is of me crying in pain after surgery at age three. I can’t describe the exhaustion of being in pain my entire life. I wish I could. I wish so much that I could give a glimpse, give people just a day of what I’ve had my entire life. The tests, needles, operations, loneliness, hallucinations, X-rays, breathing treatments, Emergency room visits. The sufferings I shared with my parents, and the suffering I hid. The extreme pain I didn’t think to share because I thought it was normal. Oh my word. How sad. How sad for the little girl that was me-not telling my parents about the leg pains, the burning, gnawing abdominal pain…They eventually found me rolling around crying silently in bed, which led to a Crohn’s disease diagnosis of seven year old me. SEVEN YEARS OLD. A junior school teacher I never told them snot even after the diagnosis, who seeing my tremendously thin frame asked if my parents don’t feed me.

And so, after decades of the same. Year after year… I am done. I am truly done. If I didn’t have children, it would be very difficult to justify staying alive. When you look at it through cold, hard, non-emotional eyes (Made that up.) , there’s no reason to keep living. I can’t be the person I wanted to be. I can’t visit the sick, I can’t drive to hospitals and find the poor and give small gifts. I can’t be a volunteer. I can’t gos day without pain. That’s kinda messed up. There’s much that I can’t do to be helpful to anyone else. And instead, I cost money and ever will. The costs will only increase. They are only increasing. I’m already going to have to pay over R2000 for today’s rheumatologist visit that a sweet friend remembered yesterday that I’d forgotten was so close. Thought I had a day to go. My ineffective pain pills from the ineffective gastroenterologist already had to be paid for by me despite my medical aid plan.

There is no silver lining. So, don’t tell me “at least” I know what it is. I wanted to know so the suffering would end. It’s not. This is money we desperately need for the children. University is coming soon. The other children need more (specifically my ‘ausome’ ones and ADHDers.) My “at least” will be like that of my aunt-my children will mourn my death, but rejoice that I’m free at last.

I embrace the end. Many of us chronic pain sufferers do. And while we wait, we hope for a ‘better’ day. And we rejoice in those who see us. Who see how hard it is, who cheer us on, celebrate our doing what’s normal for others but almost insurmountable for us.

Death and Autism

Grace by any other nameLeave a comment

I think I might have mentioned on here that we suspect my other little one is autistic. She is a speaker, seems to have typical development, has definite low muscle tone but nothing hectic is going on. Nothing that screams, “Get a professional diagnosis NOW!” Ok, I’m unflappable so maybe my definition of having isn’t going to be the same as yours. Given I’ve not been wrong with four of my children, I am very sure I’m not wrong with this fifth one. As the psychiatrist said, “I can tell you knew. You just came for confirmation, didn’t you?”

Last week as I looked at her, my heart felt extremely scared. I had this sudden feeling of impending doom and sorrow about her. It happened when some other typical autistic trait appeared. I tried to talk myself out of it. But I just wished I could protect her. I wished for her sake, that she was neurotypical.

And with such high death rates amongst the neurodivergent population, wouldn’t you also wish you could take away the hard parts? Death with all of us. But it’s higher Monday certain populations.. My heart broken last week. First came a headline about a 16 year old girl in a British boarding school who was found dead. Then they mentioned that she was autistic. Then they mentioned that her autistic trait led to her suicide. Oh, my heart broke!

(According to the report I read,) Vodka and a tattoo kit had been found in her locker. And thus she was told she would have detention. A two hour session in front of the headmistress. She couldn’t handle this. She even asked to be suspended instead. Who would ask for a worse punishment? Only someone truly tormented.

But they didn’t pay attention. As many previously labeled as ‘high functioning’ autistics state, the milder designation or label makes it seem easier or lighter. Yes, it’s easier for us CAREGIVERS, but for the autistic, it’s still not easy. Masking takes a lot of energy, for example. Dealing with sensory overload for those with sensory issues must be hectic and traumatic, day after day. This girl smiled for the camera, (Taking a dig at the lack of smile being a typical trait)was into her lessons and post-school activities, and the next day, she was forever gone.

They made the mistake of treating her as they would any other neurotypical child, ignoring that her perceptions are her reality, and that their perceptions were skewed. They didn’t listen.

She even tried to run away from school. How much more could she have done in sling for help!? She wanted to go to this school, was so excited to be there! She would not have normally run away! Why didn’t they understand why? And find a different form of ‘punishment’ if need be? Her reaction should have shown them she had been punished enough already.

But they didn’t hear her. So, she killed herself. And now her sisters and parents grieve forever.

Here in Africa, we have a different case but also resulting in an autism-related death. See, here, violence seems to be the go to response of too many. Mon justice is normal in some communities. This community knew him. They knew he was different. Also 16 years old, they knew him. He would stop and go and help anyone working in their garden, he loved to break things apart then put them back together again.

They knew he was different. Yet when they caught him holding a tap he had ‘stolen,’ they tortured him as they would and do any normal thief or rapist or killer. They didn’t look at how bad the crime was (not), nor did they pay attention to who he was…A 16 year old autistic boy with a future ahead of him. They beat him, threw water at him, electrocuted him with a car battery. He breathed his last after telling his mom who had done it.

There are many ways in which autism raises the risk of death. Please, please may we never be the cause or trigger. Not if it’s within our power to keep them alive.

PS Please correct me if i used neurodivergent in the wrong content!

Phonics

Grace by any other nameLeave a comment

You know when little ones are learning letters of the alphabet and they repeat things like “‘Dee’ is for dog. D..d..d?” while sounding out the sound for each letter?

So, my girl drags me to the fridge today so I can get her a second ice lolly. I ask her with a moan, “Oh, R…Another one? Why???”

She looks at me kneeling in front of her, touches me and says, “Why…?

Y, y, y.”

It cracked us up! We really thought she was copying me while knowing what I meant. It took me back to my boy and how he too would say what we said, but it turned out what he was saying wasn’t ACTUALLY what we were saying, but an association he’d formed with something that sounded the same, or was similar.

It always added some humour to the situation. I look forward to more. I welcome it. I embrace it. Echolalia is a privilege. Misunderstandings included.🙂

That was WEIRD!

Grace by any other nameLeave a comment

A few weeks ago, I had terrible digestive issues. So bad I almost took myself to the hospital. I did the next best thing and called a gastroenterologist. Now, the one I had seen in 2021 has left for greener pastures, so I went to a new one..or so I thought.

Let’s go back. In 2000, I started having abdominal problems. Pain, headaches, insomnia, constipation… I saw a GP who sent me to a surgeon. The exploratory surgery didn’t find anything specific to the pain but the surgeon said my colon was full of stool. And they took my appendix out because it looked wrong, and it turned out it had TB. So it was actually a good call.

But no diagnosis.

We moved to Britain and I cycled in and out of hospital emergency units, trying to figure it out. It was debilitating. And I was frustrated. They kept sending me to the Gynae department, where they kept testing me for STD and being surprised that I had none. I wonder if they do that for all females presenting with abdominal pain.

That got me nowhere. And so the next few years I kept trying to find an answer. Eventually, I was told I had IBS -irritable bowel syndrome. But the treatments were not working. They told me to increase all veggies and eat more wheat. BAD, BAD advice! Most of us are gluten intolerant! But I knew no better back then.

One gastroenterologist I saw did a colonoscopy and found three ulcers. My parents say I had one when I was 7 years old and they were told I had Crohn’s disease. I’m not sure about that. How come I’ve never had a flare up ever? What if he saw gastritis inflammation and thought it was Crohn’s? Can children have gastritis?

Fast forward to this appointment I had for yesterday. Our medical aid plan is not very patient friendly. We did briefly move to the more expensive one (Readers of my other blog will recall me lamenting the lack of choices for doctors with the older plan we had and how I was looking forward to this year and freedom to choose any doctor) but it was too expensive.

My city is huge. But I only have a choice of five gastroenterologists on this med aid plan I’m on. Also, after a clash I had with a surgeon, after which one of my non-Black friends insisted he was racist, I am very wary of Afrikaans doctors. I once saw an ortho who barely wanted to examine me so that didn’t help. It was like touching me would give him Ebola virus. (My country is so sadly complicated!)

So, I chose an English doctor. Turned out I’d seen him in 2011! His face was vaguely familiar but I don’t even recall why I went! According to him, I was trying to fix my IBS and also the tests he took showed high inflammation and low iron. (I’ve had iron deficiency anemia since I was a little child.)

He told me that chronic gastritis does not exist! I almost got off my chair but he’d already made me wait 56 minutes and I’d driven for too long. To have to wait and try find a safe specialist again… I couldn’t. So yes, he told me that chronic gastritis is a made up term by doctors who want to mollify a patient who insists there’s something wrong with them when there isn’t.

This, I couldn’t understand. It’s like saying appendicitis or measles don’t exist. He dismissed all those fears, including how NSAID would be bad for me.

But also told me that the meds I’m on for AS are generally useless to his other patients that have AS. So he confirmed THAT! He also told me to find rheumatologists who are conducting trials as then the medication would be very affordable. Sadly, they don’t announce that they are conducting trials! And the one set that do say it on their website have had mixed reviews.

The appointment was weird. I went there worried about gastritis and reflux and left with a lab form to have my iron and ferritin and inflammation levels tested. As well as a script for the reflux I mentioned, and NSAIDS! not sure why HE is giving NSAID for my AS when he knows I’m seeing a rheumy next week. Why work on reducing a pain I’m not there for that you’re not even dealing with?

I feel like an abused partner. One minute hurt, the other, confronted by a smile. I don’t want to go back. But sulfasalazine is known to cause anemia and given I’m already surviving on iron infusions, it would be remiss of me not to check that my levels are still adequate, so I had my blood tested this morning.

But I wish I’d gone elsewhere. I wish I’d had the option to.

Oh well! At least I was able to see SOMEONE. It could have been worse.

Perspective

Grace by any other nameLeave a comment

Not that I speak in respect of want: for I have learned, in whatsoever state I am, therewith to be content. Phil 4:11

Glass half full? Glass half empty? No glass at all? Or grateful that I do have a glass? When I think of the holocaust and how some concentration camps didn’t have cutlery and crockery so you had to find your own in which to put your once a day ‘water soup’ that glass becomes extremely precious. It keeps me alive long enough to hope for freedom.

Winter is here. And with it, even more pain. Washing my hair is painful in any weather, but winter means even light exercise is excruciating. Last week I couldn’t even do ten minutes of it. My knee and heel pain were too much for me to bear. Each step was torture. So I stopped, knowing that maybe another day would bring a bit more blood pumping through my veins.

Then my girl got sick. Or rather, she had yet a third skin infection. The word skin makes it seem trivial. But it was again as if she had been bitten by something and then the bite got infected. First, the red patch. Then the swelling and skin hardening. Then the pain. And the oozing abscess.

This time, the paediatrician also got the memo. Three times in less than a year just ain’t right. But what that means for us is that we all have to be treated. He thinks it’s staphylococcus that keeps affecting her. For those who don’t know, it colonises in the nose and skin. So on top of her bathing in hospital grade antiseptic and having oral antibiotics, we all have to have nasal antibiotics twice a day. All of us. If we had a domestic worker (aka maid) she too would have to do it.

This is where the glass question comes in today. I have to ensure that everything that comes into contact with her is washed daily. She can’t wear anything again. Not slippers, pyjamas, clothes, bedding, face cloth, towel. It’s winter! We live by the ocean! Everything is damp. Eve my salt shaker is wet! Things I washed on Saturday night are still very damp today, Sunday. Things I washed on Sunday are still wet. The drier we have is very slow and if you’re drying, you can’t wash as it’s a combined machine. I’m washing today’s bedding and yesterday’s towels, clothes etc.

My glass is half full. I have a washing machine. Our first few years married were torture. Washing things by hand when your fingers are stiff and painful is tortuous. Bending over a bath tub when you have arthritis, is horrible. I have a machine. I’m thankful. (But we’re running out of warm things for my girl. That’s the half aspect full aspect. I would definitely not complain if my glass was full.)

I am glad. Usually, my back would have been too sore for anything by 8am. On the treatment I’m on, it only gives up at around 11am. Only then do I want to cry from the pain. It could be worse! Today I haven’t felt like crying from the pain yet. And it’s 11:57am now as I edit. That’s good!

I have a glass that I’m thankful for. I was ironing Friday’s laundry. My shoulder hurts as I move the iron. My fingers don’t want to work well. My knees hurt. But, I was ironing in peace. And so we come to my other glass blessing. My girl is challenging. I won’t go into it all again, but ironing is not fun, usually. She tries to touch the hot part, she trips on the cord and j hurt my back even more trying to stop her from falling as she trips and the iron starts falling too, or she pulls me away wanting me to get her something to eat. But today, she played somewhere else. She left me in peace for the few minutes I could stand. She even left me in peace when I went to go boil water to make their oats. Usually, she’d be right there, crying, wanting to eat everything right NOW! But I mixed it up, poured in the honey and it’s cooling. And she doesn’t even know.

She was happy without me. She was happy in a totally different space than the one I was in. Bliss! For both of us!❤️

My other angel? The other twin? She too was happy without me. She has been extremely vocal about wanting mommy to do everything. She wants me to read to her, wants only me to feed her, wants to sit on my lap as I feed her, refuses to feed herself.. Wants me to put her to sleep, to put her in her room and change her for nap time. As she tells her teen sister when she wants to get her ready to bath, “No! Just mommy! Ella, just MOMMY! Bye bye!” But while I ironed and her sister finished off a past English exam paper, she took a clipboard and started drawing. Content. Content sitting next to her sister.

I am in pain. But I am in pain alone. I have space right now to go lie down on my bed for a few minutes while the children play contentedly without me.

As soon as I finish this, I’ll get up again and brave the pain. I do wish I had a domestic worker. But, I could not only not have one, but not have food either. I could be relying on others to supply that want. Given the ones I love most are also struggling, that would be awful. I know what it’s like to not have enough to give to someone who has even less. I would not want to be the one in need while they feel helpless and guilty.

My glass is full. I do wish I could afford to put my special angels in a special school like all the professionals who see them say. But look at the 17 year old overseas. The one who like my challenging girl, is autistic and non-speaking. They carved a swastika into the body of that poor Jewish boy while he was at school and nobody knows who did it. The suffering he went through is unimaginable. And he can never tell his parents who did it.

That could be my daughter. Suffering at school. Tormented. I’d gladly take all the challenges I face while caring for her and the rest and the house, than for her to be abused at school. So…I continue.

Thankful to have a glass. Thankful that there is something for me to drink.

I Can Say With Confidence

Grace by any other nameLeave a comment

I wanted to become a midwife. I wanted to deliver babies and comfort grieving moms. But she told me that nursing was “low class.” I then said that I wanted to become a social worker. I wanted to help foster children. Again, she said no. She told me any idiot could become a social worker, like nursing, it didn’t require intelligence, and I was “better than that.”

She was my mother.

She was the one who had money.

I had no choice.

I still wish I could have followed either of those dreams. When I started flunking one of my subjects in university, my friend and I snuck to the local maternity hospital to ask the nurses where I could study. But I couldn’t do it on my own. I was a minor and I needed her.

My daughter wants to become a midwife. My sixteen year old has her heart set on it. This week as she accompanied me and my little girl to the hospital where the pediatrician is based, she commented as we left, “I’m so sure I want to be a nurse. I’m so comfortable here in this hospital setting. I might not even stick to being a midwife specifically, but I want to be a nurse.”

I can say with full confidence that this is where I know I’m better than my mother will ever be. I don’t know if my girl’s Physics marks will allow her to apply. But as God is my witness, I will never stop her not my son from doing any thing that is harmless. I am better because I will support her dream and do support it. Let poverty and suffering come (All the nurses we’ve met hate it because of the extremely low pay, awful hours and abuse from doctors and patients). I will support her. I support her so much that I’ve made sure that my cousin in law will help her should she go to Britain to work.

I am loving. I am a cheerleader. I am not filled with stupid pride. I am kind. I am not my mother.

Thank you God. I hope and pray I will be like You. Just. Uncompromising and loving.

Moments of Grace

Grace by any other nameLeave a comment

Oh… Where to start. Last year in December, I took my non-speaking three year old to a new paediatrician. I wanted to find out if it was too early for her to be put on Risperdal/Risperidone. I’d seen how wonderfully my seven year old has done on it. No more throwing items when angry, no excessive emotional reactions, and no more screaming and crying that can be heard a block away.

My poor girl was her own advocate that day. She provided all the proof needed. She was terrified when we walked into the waiting room. Clung to me with all her might. Was nervous and would flinch every time the receptionist spoke to her. As for the actual medical exam? It was a nightmare. Poor girl didn’t want the doctor close to her at all. He wasn’t able to weigh her. She didn’t want to stand on the scale. I ended up suggesting that I weigh myself then I get on holding her, and we subtract the difference. Even that wasn’t simple. She was in full meltdown, kicking the wall and making me lose my balance. I felt sorry for any waiting children or babies! Those screams were awful. She was so miserable.

Of course, the doctor prescribed the medication.

Today, we went in for the first time since December. Given her reaction, I had emailed when she had a problem but this time the paed wanted to see her. With great trepidation I took her and my eldest daughter. My back and carrying her…

I didn’t realise how traumatic that first visit had been for the receptionist till her reaction to my poor baby happily walking in, getting onto then off the sofa, smiling, and putting her hands on the sofa and doing donkey kicks. The lady was so happy that she said we could allow her to do anything she wanted, as long as she remained as happy and calm as she was that moment. We could let her touch anything, roam around, go to her desk…

When the doctor called us in, she did run away from him at first. But after that, it was basically plain sailing! He suggested that I put her on my lap and sit on the bed but she insisted on getting OFF my lap and sitting on the bed on her own! She let him even put a gloved finger in her mouth! She let him put the measuring tape around her head. She flinched a bit when he looked in her ears but didn’t move away. And no crying at all! This time, he was able to measure her height and she stood on the scale herself!

The difference was astounding. And heartwarming. The paed had hoped the meds would reduce her anxiety. It definitely has.

No trauma! I hate medication with a passion. But sometimes, a mom has to do what a mom has to do for the greater good. That little smile she offered the receptionist is worth it. I’d rather a happy child who might later on have health problems, than an unhappy child who might harm herself today. The brain isn’t working ok, why punish her because of it?

Why No Sermons?

Grace by any other nameLeave a comment

Many years ago, an afternoon study at one of our churches was announced. They wanted to educate on autism as a mother of an autistic boy was being condemned for (I think) not attending church.

I felt sorry for her, but only after my special kiddies joined the family did her struggles make even more sense. Before my twins were born, my children stayed for the entire service. And my middle two would constantly be up and down, ostensibly going to the loo. (I knew it was ‘boredom’) They did the same during children’s class too. And would blurt out random comments that had nothing to do with the story.

I stopped making them attend the sermon. They weren’t gaining anything. They were distracting the congregation. And even Sabbath school isn’t every week. Half the time we stay home. Why make them sit for hours? I’d ask them what they heard and they’d not recall a thing. Why force them?

This Sabbath, they went to an afternoon study presented by their dad, who had been asked to speak about health. My eight year old said she enjoyed it because she could understand what he was saying, unlike other speakers she’d heard at church. (See? Another sign that sermon is too much.) But when I asked both her and her seven year old brother what they learnt, from that whole talk, they recalled only one line. “You must stretch before you exercise.” And that wasn’t even what their dad said, it was a comment from the floor. I know that even if they can’t repeat what they hear, something goes in, but that ‘something they gain’ is just fine coming from the story in the children’s lesson.

And so for now, my little ones (minus their ‘super crying, can’t sit still, can’t handle much’ autistic sister who stays home permanently) only go for the last half of Sabbath school, and class. And when we are home and I’m teaching, I know exactly what they are taking in because I take it to their ability, keep my sentences short and ask them to tell me what they’ve heard so I can be sure they understand.

Why am I sharing this? Because of an American mom who used to read my first blog. She felt seen. She too couldn’t stay at church with her autistic son. And she felt scared that somehow God wouldn’t get it. But if I could, it showed her that she wasn’t in the wrong. God knows what our children can handle. He also knows the worship experience is for us adults too. Trying to keep a runner from running means you’re not listening much anyway. Trying to concentrate while your child is uncomfortable is nearly impossible. Forcing your child to endure what they shouldn’t be, is cruel. And so, though I’m no priest or prophet, I give any other mom permission to worship the best way possible. At home, I can read the Word during nap time. And my children can understand better when I teach. And that’s what matters most.