Tag: non-verbal

Rheumy Tomorrow. Museum the Other Day

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Telling her I’m giving up. Or rather, I have no more hope left in me. I’m sucking up all the pain tablets I can but getting not enough relief to even feel any relief.

Is there nothing more we can do for pain? Should I see a pain specialist? What can they do? Maybe I should! See, I knew this blogging thing was good for me! I hadn’t thought of going to a pain specialist. Rheumatologists seem to focus on the disease and not the pain caused by the disease. Surely there must be more. I’ll ask her what she thinks.

I did my second Cosentyx injection this Monday and bled for the first time ever. It wasn’t bad. Just weird. Unusual. I’m going to only do my thighs seeing as it’s once every 28 days anyway. I don’t think there’s any risk of the area becoming thick and hardened like with weekly injections. I don’t know if

Life continues as normal. One child pulling my hair and pushing me harder. Some days she’s so happy. Her twin is still into Pharaoh. And school is still hard on me. I’ve failed to find schools that don’t have a uniform, are affordable, and in a safe area.

But the good news is that my teens are definitely- unless they fail their final exams – going to the University of Pretoria next year. I’m so happy for them! I last reported that my son got accepted for both his choices and that my girl got her second choice. Last week she got an email stating she’d been accepted into the The Faculty of Health Sciences!! She will do her beloved Nursing!! Woohoo!

I’m so happy they are going to live their own lives. As I state in a video I posted last week, my mother stopped me from both my first and second choices (I wanted to be midwife or am social worker) because she said they weren’t high class enough. By having freedom to choose, they are living my dream, and it doesn’t hurt that one dream is nursing!🥹☺️ If she changes her mind, I won’t care. I told her dad that they might find they are actually more drawn to something else so to give them some leeway. Advocate Mommy!

We went to the SA national history museum this past weekend. As expected, our Reo motored through and out as soon as possible. I wish she could tell us what she feels. Too much space? Doesn’t like the aircon? Too dark? Too many weird people? She didn’t even glance at any of the exhibits whereas her twin was talking nineteen to the dozen!

You can find the video I posted with more (poor quality photos) HERE.

Edit: I’m not going crazy or overblowing things! Well, I knew I wasn’t anyway! I saw my blood test results after typing all the above. My inflammatory markers have never been this high. Not each time we’ve tested for them, at least. They’ve even gone down a normal 2.4 when I was on Enbrel – for a short time. Otherwise other times it was 6, 5.5… This time it’s 14.4 and our standards say anything above 5 is “High.”

This will really help with my case! I’m truly suffering and need more help than I’m getting. Clearly the anti inflammatory tablets aren’t helping and the Cosentyx hasn’t started (yet.) My liver is also starting to complain. Thankfully it’s not too bad at all. Just gone higher than the norm. My AST and ALT are usually around 7, 18 or 10, 18. This time they were 22, 24. I’m not worried YET because the highest normal is 36. And, my kidneys have stayed stable. It could be worse! But that is not much comfort given how terrible I feel day and night.

Something surely has to be changed, right? Or we really will do nothing until two months’ time when we re-test? How ‘dead’ will I be by then?

My Handicapped Disc

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My handicapped disc application process was a nightmare. A mini nightmare, but still one! Like another lady who came after me in the queue, I’d gone to the wrong office first. One three suburbs away. So I limped back to the car and drove (hurts) to the correct department.

Milnerton Traffic Department.

The queue was not for the faint-hearted. I wanted to leave after standing there for so long that it was causing more pain. But what if next time it was longer? I’ve seen it longer and waited in much longer ones. So I waited.

Finally got in, was sent to “Enquiries” by the guard, only for the lady there to tell me the ONE lady who processes applications wasn’t there! I could “wait 10, 20 minutes or leave and come back later.” Just one trip home would take that long! And I’d be hurting myself even more and wasting fuel. So I opted to wait.

I went and told a lady who’d come maybe five people after me. I’d overheard her asking the guard the same question I’d asked, and telling people on the phone that she was there waiting to apply for her dad’s disc. I told her I was suspicious. 10, 20 minutes is one thing, why also the option to leave? Was it really going to only be 10, 20 minutes? She went to the back to ask what in the world they meant, making us wait so long? She came back and told me she was leaving and returning later and I could too, as the ONE lady who does our applications was on lunch break.

I decided to go sit in the car instead of waiting there in that very busy department unable to be comfortable in my N95 face mask.

Waited around 30 minutes and went back in and the ONE lady was called by the “Enquiries” lady. Two ID photos, R100 in cash (No card payments) and a form later, I had my disc. While waiting, I realised that if they granted me the disc, I’d have another reason to be grateful.

It really made life easier when a hospital guard at the gate told me I could park in the “Moms and tots” parking bay recently. I don’t view her and her twin as babies so never had before. But with her weight, with getting her out and into the car seat, with trying to convince her to walk in, it’s better the shorter the distance we have to try convince her not to run away.

So, I got it. My application was convincing. (I fill in a section, send it to my doctor to fill in the rest. Receive it and take it in.) Bittersweet-for those not subscribed to my YouTube channel so won’t see the video I posted. Bittersweet. I don’t know if my hips will ever be free moving ever again. The disease itself only progresses-gets worse. Treatment-when the correct one is found-slows it. So yes, though it was hard reading the form where my rheumatologist had written that “Ankylosing spondylitis is a degenerative disease. No recovery,” it was harder holding the disc in my hand. I applied because I need it. The pain, stiffness, limping caused just by walking from the car into the pharmacy is something you can’t ignore. Add waiting and you’re in trouble.

Also, my lungs… Just carrying two packs of diapers up the stairs at Bayside Mall and to the car makes me short of breath. Same with carting just one bag of groceries to the car at Table View Shopping Centre. It’s as if I was doing a slow run by the time I get to the car.

But, that wasn’t my plan. My plan was to be a healthy mother who can take all her children who need therapy, to therapy and do their home exercises! I was to be able to teach painlessly, instead of wishing I wasn’t teaching at all, instead of being happy when our very short (ADHD) class time ends.

The behavioural optometrist emailed to ask how we’ve been. She misses the children. She means it. She always said they brightened her day. The last time I’d gotten in touch was when Amarissa had knee surgery so couldn’t return to therapy yet. (Visual perception disorders are about the entire brain. So there’s lots of stuff you’d also be doing in OT. Movement, crawling nag, bear walking…) I explained to her that I’m much worse than I was the last time I’d taken my middle two to therapy, and already back then, I would get home and be in extreme pain. Now, things are much worse.

She’s based in Durbanville. There are no behavioural optometrists in our area. My oldest daughter’s Biology practical exams were in Durbanville in May. By then, driving home even after just an hour’s wait- I was in so much pain, grunting in agony, that Eliora would tell me, “Don’t worry, mom…Almost there. We’re almost home.”

Slowly, thankfully slowly, struggling more with breathing only at age 44!? Disabling pain, decreasing mobility, worsening limping so early?

Heavier challenges at home, bigger struggles as a mother?

I need the disc. But it means facing the reality of no cure and for now, not even a treatment that helps relieve me of the enthesitis and bone pain. Every limp is shooting pain in my SI joint. Stiffness in my hip. (Is it fusing? Why are my AS exercises becoming more impossible for the right hip on top of the decreasing spine mobility?)

Worse. Harder. Sadder.

No wonder it was bittersweet, holding that disc in my hand.

Will I Get Used to It?

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New Swing. They Love it!!

Is it possible to ever get used to a world in which my daughter, R, will never ever answer a question? Never have a conversation with me? Never tell me something is sore, funny, yummy..? Is it possible that I will accept it in the next 20 years?

I don’t think so. Sylvester Stallone’s son is a grown adult over 30 years old and the son’s mom still hopes he will speak, converse. We can’t give up. I guess it’s human to hope. You forget all the other months and years of silence and hope today something will be different.

My angel…She loves sitting in her room arranging her toys- very specific ones- in different ways. She can spend hours alone in there. I go in…Sometimes she gently pushes me, asking me to leave her in peace. The other day she shut the door on her dad when he peeped in. Most of the time, she’s happy to see me. Still no, “Mommy!” but she doesn’t cry, doesn’t get angry. But also doesn’t let me engage in play with her or even next to her. If she’s playing with a set of blocks and I take my own set, she takes my set and adds them to hers. No conversation.

Sometimes it’s ok. Sometimes I’ve grateful that she pulled me to her room to go watch her play. That satisfies me all day long! But sometimes, my heart breaks. Yesterday, I took some pictures in. Just simple body part pictures. She wouldn’t look at any of them. Definitely didn’t repeat any word I used. I then took her doll and asked, “This is..?” She blurted out, “Baby!” Then I pointed at her bunny and she said, “Doll!” I asked her to touch the doll’s hair and she did.

Then that was it. No more engaging. She was back firmly in her world. No talking about feet, toes, no matter what I did. She used to love touching my toes when I moved them, and once suddenly shouted, “ Toes!” when I wiggled them. But not this time. That was our ‘conversation’ the entire day.

So, knowing she watches video and repeats what she hears on video whereas she doesn’t often repeat much of what we say here at home, I just decided to teach her a different way. Can’t wallow in heartache all day, can I? I have a child’s brain to try teach! And her twin sister will benefit too, learning from a South African accent instead of only hearing and relating the American one she hears when watching toddler videos.

I did this for the children here at home. Minus the introduction, of course. And dear readers, my silent angel giggled and giggled and laughed and laughed when she watched it!!!🥹🥹🥹

I may not be able to reach her in a typical way, but I can reach her. It was made for them here at home. Just something random to help them learn. Very specific for our needs – building vocabulary, using sentences and teaching a lesson- no running in the house! I cut the video, it was bad. But my very talkative twin is fine. (So much for the orthopedic surgeon who said she must not run, not fall for the next two weeks to allow her arm to heal fully!)

This is a different glimpse of our homeschool life. Needs must…

PS There are some moments… On Friday evenings, we say the Lord’s Prayer when praying. Yesterday, she met saying, “ Our Father…” before the roaster began, and during. 🤣 “Our Father…”

And this is why we don’t give up. Connections are forming. It takes years- we’ve said the Lord’s Prayer every Friday since the teens were babies! And yesterday was the first time she showed us that she ‘hears’ it… And so it’s disheartening in the moment, when she doesn’t look or seem to see it hear. But I pick myself up and keep trying. Why I keep trying to form connections throughout the day. Firstly, why not? And secondly- because I hope springs eternal. The sound of her laughter makes up for the sound of my breaking heart.

Presume Competence

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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.

Still An Autism Mom

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We went to the aquarium a while ago. Recently… I was nervous. I didn’t know what it would be like. I pictured myself missing my husband as Twin B raced ahead with him in tow like last time.

I was so wrong!

This time, I was the object of her affection. Which meant that I’m the one who had to do the zooming ahead. She enjoyed the freedom of going walking fast all over the place. I wanted to see the new fish though so the zooming wasn’t achieving MY goals! She won! Though I did double back a few times with her as you can see. And at other times, they waited for us to come back round.

Seeing her happy made me happy. So, I held her hand and zoomed with her as we raced up the wide passages and down again.

Haha. I got down here. My knees protested painfully, but as I was quickly getting up, she came and unexpectedly sat on me. I fell over. As I laughed-after screaming in shock-husband asked, “ What ARE you doing!?”

I answered as if it was totally normal, “I’m falling!” With a “Duh!” in my head for good measure. 😉

Then there was this day. She was tired but not falling asleep so I went in and applied deep pressure by lying on her. She loved it!

Bad photos but good times!

We are still not really speaking to communicate but there are many words! She looks at us intently and will suddenly blurt out, “ Chicken! Pig! Cow! Bubbles!”

But she’s very clear when she grabs my hand and these days instead of leading me to the cupboard to get food, pulls me to the garage and says, “Car!”❤️❤️

And this morning when her dad was singing “no more wars” she stood in front of him and blurted out, “W-w-double yoo. War!”

I love those moments because what she’s saying matches what she’s thinking or hearing. I told my husband that given she’s so intentional and we get what she’s referring to at these times, then there’s a link with the random words … So, clearly when she says “cow” to me, she’s saying ‘Mom, you’re as fat as a cow.”😉