Tag: non-speaking

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.

Perfectly Ok

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I always feared trying to educate small ones of differing grades. That was before I knew the extra educational needs and learning disabilities that would befall us.

What is perfect in the day of a sick mother of disabled children?

Whatever it is, it is impossible to attain. So, I will live with “perfectly ok.” Today, was perfectly ok. I limped to go collect our hope in two bottles and went to the bank and then wanted to crawl home and stay in bed.

But it was perfectly ok that I couldn’t. It’s perfectly ok that I feel tired. It’s not only the AS fatigue, it’s also the good kind of tired from USING my body, not only from constant pain and fighting inflammation. I like that kind of tired, even as it contends with my body’s innate fatigue that I wake up with and fight against daily.

It was good be busy. I love being busy. I love doing. And so, when I finally lay down so I could plan the next Bible story segment and learn the memory verse so I could make up a song for the children, it was perfectly ok that that didn’t happen.

Instead, just as I dragged my laptop across the bed and put my feet on my hot water bottle, my littles came in, my four year old leading them. “Can we come lie down in bed with you?”

Well, there went the silence and rest I’d been hoping for! Instead, I got some cuddle time, some Bible video time in bed and random conversation with my littles. It’s a fair trade, right? After all, the most important thing is to help them develop holistically, and that definitely includes emotionally, doesn’t it.

I didn’t do ANY of the school work I’d planned. I’d planned it before I knew I’d need an hour and a half to go collect my daughter’s new med, the Strattera. My hope in a bottle. Last week, during our crazy hospital stay, I told the psychiatrist how my non very talkative angel can’t focus. I try show her pictures, she isn’t interested. We tried sign, she didn’t look long enough to learn the correct sign for the word meant. We speak, she doesn’t copy. We try the iPad, she only wants one specific app- Starfall- and only one specific session. AND she is all over the place anyway, bouncy and busy. Never sitting still.

The psychiatrist asked if we’d tried any ADHD meds. I told her that (based on the extremely judgmental pharmacist who castigated me once when collecting my son’s Ritalin) I’d thought I have to wait till she is six years old for an ADHD assessment, and even with age six, the pharmacist was angry at me and all the professionals who agreed that my boy who was six years old at the time (and our other girl) has ADHD. I wish he could live my life. I wish he could try learn with multiple thoughts buzzing in his head. I wish he could try memorise simple things with other things intruding and stopping him. Seriously, I asked my nine year old what one plus one is and she said two. I congratulated her and she said she’d been guessing.

After all these years, not much stays in the memory despite different learning methods and just rote learning, even with medication. Imagine without!

So, psychiatrist said Strattera should take 6-8 weeks to start working – if it does. It’s generally also sued for ADHD but nobody has ever suggested it to us. The psychiatrist hopes that then her head will be calmer and able to take in more, to learn. My nine year old asked if it would make her talk.

That requires prayer and at this point, a miracle. I told her that what I want is for our girl to learn to communicate, whichever format that may be in. We will learn with her. We just want her to be able to learn.

And so, we have two (out of three- the pharmacy only had two and our usual one close by had zero) bottles of hope. Our hope in a bottle. We need a huge dose for all of us! Today, it’s about my non l-talking angel who moved our hands to get what she wants except for the words, “Cereal, juice, peanuts and raisins, ice lolly..” She certainly has her priorities sorted.😉

If we look at our problems individually, we will faint. Sleepless nights of pain, my right hip seems to be fusing. It’s not behaving at all and it’s scaring me. My limping has increased even according to my trusty Apple Watch. To know I have such precious and so young (intellectually forever young and struggling) is daunting. I can’t do it NOW, how in the world will I do it next year?

And so, today I focus on our hope in a bottle. And I focus- for this blog post because sadly, life isn’t like that, I can’t compartmentalism all the things and problems – on the times she is happy. My daughter’s anesthetist asked why I was limping. I explained that I have AS. His response, “Please tell me Amarissa also doesn’t have it.” Then he did an impromptu check that I still have neck mobility after telling me that AS is an anesthetist’s nightmare. Yeah, I can’t forget the people who can no longer have surgery under general anesthesia because they can’t ve ventilated due to the curve they are stuck with. I also can’t forget the man who thought he was fine and when they inserted the breathing tube, it turned out bone had grown INWARDS into his throat. The bone broke off and unbeknownst to the theatre staff, he choked on the bone as it occluded his airway.

AS is a beast. AS with special little ones is hectic. I changed our angel’s diaper and wanted to cry. How will I do this next year? And the year after? Will she be able to comprehend if I tell her to kneel so I can wipe from that position rather than on her back? She doesn’t comprehend much now… Or, doesn’t react as one who does. “Give to Ella” means nothing. How will this work? And the siblings who also need lots of work? How will we do this?

I don’t know how. But we will. We have no choice. Somehow, we will keep going, even when we don’t feel perfectly ok at all.

And though we didn’t do any of the book work I’d planned, we did lots of physical and occupational therapy home exercises. We were happy. We laughed, we cried. I did laundry….We did stuff. And didn’t I say I like doing? What we managed, was perfectly ok.

Also, I got validation. I researched lots and read books by qualified doctors and researchers. I buy the supplements…The psychiatrist if we’ve tried magnesium, yes. Zinc, yes. All of them, we are doing. Not only for our non speaker, but for our ADHD girl with learning disorders who landed us in hospital last week. Basically, I’m doing everything that I can. The impossible is not in my hands. I need to learn to be perfectly ok with that.

She suggested we take our girl for an educational psych assessment. We’ve done two already in her life. I sent the report and our vision therapy report. Again, validation. I just wish I could ram into my thick skull the knowledge that I am not failing my children. It’s hard to believe you’re doing perfectly ok when the majority of your six are struggling so much. But we must.

Give ourselves the grace we would extend to others. Start with yourself first.

Wins

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Since Thursday, I’ve been consistently limping, walking off because of the stiffness in my pelvic bones. I was even stumbling because I struggled to always lift my feet high enough off the ground.

This video was yesterday, Saturday morning. I had never watched myself before. My husband did once complain that while he had a break on a work trip and the teens were at exams, he had a peak at our security cameras and he didn’t know where I was going, about to take a walk with the small four while clearly limping.

Since Thursday, I’ve slowed down. Pain extreme. Exhaustion bad. I didn’t even reach 9000 steps on Thursday yet my usual average is between 12000-14000. Yesterday was worse. Despite all the pain meds, I didn’t even get a minute during which I could say, “I’m pain free.” It was hell. The pain was consistently an 8 out of 10. You couldn’t ignore it.

Today, for three and a half hours, I had almost no pain. I could fully ignore it and only felt it if an inflamed area got bumped!! It was lovely! I was so scared that yesterday heralded days or weeks of no relief whatsoever.

That’s a win for me! I know the nights are bad, and the mornings too. But I’m hoping my day tomorrow will be like today, at the very least.

Second win.

I haven’t heard her calling me mommy in a year. She stopped even saying, “ Dinosaur” for her dad. But she is still saying words, naming the foods and beverages she wants! That’s so different. All other times, her words would disappear for months.

Also, if you listen carefully, she whispered, “Doll” twice! It’s not the first time she completed or added to something I’ve said. As she watched me pouring cereal into a bowl for her, I said to her, “I put it in!” And she added, “ Into the bowl!”

Other things have stayed the same but a bit better too! I noticed that a “blister” she’d had on her right hand was now looking more like an infection so I asked her dad to take her to the doctor yesterday. Honestly, even if I didn’t have AS, I wouldn’t want to take her. She experiences so much suffering! Things scare her, she wants to leave and not wait, she wants to pull me out the doctor’s rooms and doesn’t want to be examined. It’s traumatic for both of us-her being ‘tortured’ and my dealing with her very big emotions while wanting to cry along with her.

Her dad was also not feeling up to it because of her screams and cries and how helpless he feels. He said he’d take her only if or our eighteen year old son went alone.😅I chose my son, who was NOT enthralled with the idea.

She came home screaming.

But guess what, she didn’t scream going in. Didn’t scream or even want to leave while waiting to be seen, and except for when the doctor wanted to measure her height, she allowed him to do other checks!! The ONLY reason she came home screaming was because near the END of the appointment, she spotted a wooden piece of art that she wanted to take with her.

And while waiting for the appointment to start, she spotted her favourite calming object- a plant! Her dad asked, “What’s that?” And she actually answered!! “It’s a tree. It’s leaves.” And she tried to pull her brother’s hand to pick it up.😅Thankfully she didn’t complain when the answer was no.

All in all, it was the best doctor’s appointment she’s ever experienced. Her anxiety and anti psychotic meds are helping! (We still get angry cries over wanting things to happen that can’t ever happen.) I was right that she needs oral antibiotics, and her brother came back much happier than when he left. I mentioned the being right thing because I didn’t want to send my husband on a fool’s errand and have him return telling me I was being worried for nothing.

Maybe one day she will answer all questions and tell us her thoughts and not just blurt out random words like, “ Tiger!” out of the blue when she does speak. Maybe one day she will answer more questions than she can’t. Maybe one day I will know that she UNDERSTANDS me when I tell her I love her.

Maybe.❤️

PS. The doctor asked if she didn’t need Ritalin or something because of how hyper and all over she was. I am so vindicated! Not that my husband said I was wrong in thinking she probably also has ADHD, but it felt good for a professional to wonder if it would “not help calm her down.”😅 We have over a year till she’s even eligible and I don’t even know how we’d assess her for ADHD given it’s all about ability to focus on tasks and how quickly one loses focus and the weak points that show typical learning disorders found in ADHD. She does not stay still! At all! But, we will cross that bridge when we come to it!

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.”😉

Woohoo!

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My three year old -soon to be four-is a twin. We suspect they both are autistic but she’s more challenging because her feelings are super strong and she has minimal speech. When she wants something, she will take your hand and lead you to it. If she says “Mommy” know that she won’t say it again till a few months pass. If she says “toes,” there’s no guarantee she will say it again. She is truly what I imagine a minimally speaking autistic is like.

But hey, it’s a step from non-speaking. And if she goes back to no verbal speech whatsoever, I hope she will learn to type or use some other form of AAC to communicate with. I know some adults who just have never been able to communicate in any understandable way. I can’t imagine how frustrating that must be!

This past week, she has been saying, “Some mik” or “Zhoos” when she wants a milk or juice. I always ask, “What do you want?” And then after a brief pause, answering for her. (Last thing I want is to ever make her feel pressured to do something she cannot do, or force her to try do something her brain stops her from doing. Thinking of the adults who said they want to talk but the words become stuck as if behind a wall, and the mouth won’t produce what the brain is thinking.)

But today. Just now… She did it. She took my hand, led me to the fridge. I asked her, “What do you want?”

And for the first time ever, she answered verbally! I am teary just typing it! She said, “Ice lolly!”

I’m so so excited and so, happy!

I know it’s very inconsistent. I know it’s rare. But… It’s possible! And today was the day!