Creating “awareness” is so that people who might suffer the same condition know where to get help, and to educate others not to expect the impossible from you, now that they know what you’re fighting against.
Do others “create awareness” for the rest of their lives or do they ever sit down and say they’ve done their part?
I was diagnosed in 2023. I think know it’s time I retire. It was so major, having a name for symptoms that started in childhood and just got worse and worse. More importantly, it was a disease I’d never heard of. So I knew most of my people didn’t know of it either. If it had been common, I’d not have even begun with “awareness.” Those who are in my world don’t have AS nor its symptoms. And too many of those who are in my world find it very hard to be empathetic. To put themselves in my shoes. You’ll find an asinine comment like the following after I celebrated being able to work till later than normal, “Don’t forget, we also get tired.”
Ma’am, we’re fighting inflammation. We are always tired. We don’t get tired, we just get WORSE as the hours pass. And we’re fighting constant pain and stiffness in large bones. We’re fighting the conditions the disease has caused too. It’s very different to a very healthy person with only one child. If you can’t extend mercy and understanding, then awareness has not worked. You’re still unaware.
And so, my awareness campaign has stopped. It’s now left to those who ask specific questions to be aware and to leave me happily aware that the ‘campaign’ made a difference. One even remembered I am also fighting too, too early menopause yesterday!! That meant so much to me! That’s when I realised I could truly hang up my gloves. Those whose hearts are big enough, have retained all the information. I can count them on one hand, but .. there are people I can count! Some literally have NOBODY at all in their personal lives. I have some who check on me and remember what AS and other conditions do to me! Even when I’ve been silent for months about it.
My awareness creation has ended with the awareness that I am in some people’s minds. They’re aware. And they care. I am GRATEFUL.
What was the trigger for this post? This random image above that appeared on my wall, by Positively Rheumatoid. Fighting my pain and fatigue all day, every day, is part of my life; pretending all day that I’m not getting WORSE as the hours pass. I used to post when things changed, when I’d seen the rheumatologist… But one day when I celebrated working too much and for too long in the night, a very healthy person with only one child shared that they had done the same. It’s NOT the same. If they’d been aware, they’d have never compared their healthy body working late, with mine, which suffered badly the following day. Someone telling you with fatigue as a huge burden you and your pain are constantly fighting that “we also get tired” shows they understood nothing of the things they were to be aware of. Instead of celebrating that for once I was a bit more normal, they think it’s nothing. Purely because it’s nothing for them with their healthy bodies. Also because they didn’t gain from the awareness shared, what an inflammatory autoimmune disease is. And so, they helped shape future AS posts. And this blog helped too. And more the two sisters who ask the specifics are enough.
I’m in a global village and I’m thankful. I can also come across people far away who understand each symptom because they are living it. Again… I’m grateful.❤️
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!
I’m going to send this link to my people. It’s something that bugged me years ago just out of principle-and continues even worse today. I might have even blogged about it before, I don’t know.
When I ask “How are the boys?” I truly am asking how your sons are. How their health is. How they are feeling that day. Mental health included. An answer like, “Tim isn’t great. His friends are mocking him because we can’t afford expensive brand cricket bats for him. He was complaining about the teasing , feeling bad that he’s already different from the others because we are a different race to him, and now he is less than, in his eyes,” is an answer. I now know he’s struggling. Adoption when you’re Black and your parents are White is hard. Having it constantly brought up, having other differences brought up, hurts when you’re just a little boy wanting to fit in.
That is an answer. So is my other friend’s answer when I ask how her children are, “Oh, the boy has been coughing again. The girl’s tummy hasn’t bothered her much lately.” That is-for me-a proper response to the question, “How are the children?”
But even years ago, telling me a milestone wasn’t an answer, I hadn’t asked, after all. I don’t ask, “So, what can your baby do now?” I know I blogged about the church mom who one day said, “*Pamela showed us last week that her baby can walk now. And look, my son has started…Walk, baby boy. And what about Bukhosi? Let’s teach Bukhosi how to walk.”
I told her, “He’s been walking confidently for two months already. But this is Sabbath school class time and so I never knew I needed to make an announcement!”🙄
Milestones are lovely-for the parents. But they aren’t what I personally use when connecting with others. I was super excited when my son started walking at eight months old but so what? It wasn’t some major announcement to anyone but his aunt who wanted to know how he was progressing. A church friend boasted about how she was a very early walker. But she’s not a very nice person. I’d rather she was that than an early walker.🤷🏽♀️
It’s even worse now. It started stinging when I’d take my now eight year old for assessments. We’d be sitting in the waiting room and another mom would be all friendly and conversational. She’d ask how old he was and then confidently state, “Poor you! He must be crawling all over the place and opening cupboards! Must be so hard to keep up with him, hey?” She meant well. But I was there because he couldn’t sit without support. Crawling was months away. She meant well. But it stung because it was a reminder that all was not well. It was the very ‘why’ for my presence there. To find out ‘why’ my son was not reaching milestones. Why he was so wobbly. Why things were bad.
Today, it’s even worse, being reminded of what is possible for MOST and the norm for most others. I have a nine year old who took her little sisters’ tongs to her bedroom and just snapped them. Broke them. I don’t know why. I find books in her room, pages torn out. I don’t know why. She laughs a manic laugh on purpose that sets my teeth on edge. Very loud and exaggerated. And I wonder, “Is this fetal alcohol syndrome showing its ugly head? I did ask her birth mom if she drank while pregnant on top of everything else she subjected my daughter to in the womb- the multiple abortion attempts that must have impacted her- and her response was, ‘Sis, I lived as if I wasn’t pregnant.’” It’s a concern. We see the psychiatrist on the 18th next month. This is money we don’t have much of, going down the drain. It’s things my children play with, being taken from them. And when I ask why she did it, why she damaged things, I get an almost irritated, “I don’t know!”
My very talkative twin has started smearing her stool everywhere. She has been potty trained. But this week, she’s gone off the rails for some reason and isn’t going to the loo. Clean ups are backbreaking and tiring.
I could go on and on. My eight year son makes no sense sometimes when he talks but expects an answer because in his head, he is making total sense. “But why shouldn’t I eat the muffin?” Yet there is no muffin and I certainly never said he couldn’t eat it (nor any other thing.) And he laughs when I ask what he is trying to say or ask about.
Yesterday, my not very talkative daughter hurt me. She was extremely upset but couldn’t say why. Even the words she was trying to say weren’t real words. It’s bad enough when she says ‘grapes’ then gets upset when I pull the grapes out because she actually meant to say ‘bread.’ But when it’s gibberish… “Pezel’ she will say. And she doesn’t mean pretzel. And there’s nothing specific she usually refers to with that name. So I’ll be lost. I’ll try a few of the therapeutic calming things we should try and they will fail. She will be angry. And things deteriorate. Yesterday, she threw a hard sippy cup with juice in it and it hit me. Hit my mouth. I told her, “No!” She then threw the other one, then her sister’s toothbrush then…And then herself. So I had to bend down to catch her before she cracked her head on the tiles. And my BACK!!
See, that’s the problem. I’m dealing with all this while not even well. I am living with many incurable conditions (even IBS isn’t something mild. I just don’t mention it because at least it won’t leave me disabled or dead like AS and my lungs.) It really is constant mental strain. Every moment my mind is either trying to solve a problem, wondering how to hide something, or causing me extra physical pain.
When I ask people how their children are. I mean it. I’m not asking, “What are your children about to do?” I’m not asking, “Where are you going this weekend?” I know the answers would only reinforce how I am alone (amongst my circle of friends) in my battles. But when I ask, people think that I want to know their movements, plans, activities.
I don’t. I really am truly concerned about the health. Mental and physical.
I’m the wrong person for the other stuff. I get reminded of what’s missing with every response that says, “I’m planning Tim’s birthday party. Sarah’s was last month..” Good for you. Your children can handle people, can make friends. Mine can’t. People cause them stress. Thanks for the unintentional reminder that our lives are very different, yours and mine.
Or telling me, “They’re fine. We’re off to ballet soon.”
Good for you. Your child has coordination and the ability to follow instructions. I’m breaking my back doing exercises to help my eight year old balance. Both he and his sister were asking me why they struggle to walk on a balance beam, why they keep falling off a straight line. But hey, nice for you that yours can dance.
I know they don’t mean to rub it in. But they do. They rub in every dream I had for my children that is an impossibility. Normality is not our reality . They remind me of every struggle I have and every freedom they with their typical children have. It hurt when my daughter asked why they can’t walk on a straight line. Seriously?? Even therapeutic activities remind them how ‘not ok’ they are. And that hurts my mommy heart.
And so, I will share this post. I know you mean well. But I’m the wrong person to share those activities or plans with when I’m not expecting it. It’s like telling me you’re going on holiday when I can’t even get my precious child to go to the shop. Nor could we ever afford a holiday nor feel rested with their challenges. If I was unemployed, starving, and didn’t even have food every day, would you tell me about the expensive cake you ordered for your husband’s birthday when cake is something I’ve not afforded in years? But if I ask you your plans for his birthday, then that shows I am ready to know that you’re eating while I’m not. And will celebrate with you in spirit.
That’s how it is when you tell me the oh so normal things your children get to do when I haven’t asked. Some days I am strong enough to bear the reminder that my life is full of disability while yours isn’t. Those days, when I’m strong enough to bear the reminder, I ask what your weekend plans are.
But on the days when I’m reminded of how limited Africa is for our special needs children, on the days I’m aware that I am only homeschooling special needs because I have no other CHOICE, it’s been taken from me, I can’t find a SMALL (less chance of her bringing viruses home) place for a non potty trained almost five year old, I can’t find a special needs school for my son that isn’t noisy, and all the strain results in more struggle for this dying body…Please don’t remind me of what I’m missing. I know your children go to school. My goodness, do you know how blessed you are that your children can COMMUNICATE? Please don’t tell me, “They’re fine. They’re going to school just now,” when I ask how they are. You have no idea what might have just happened, or is happening in that moment in my soul.
Maybe my child just hurt me and reminded me how desperately I need help and a break. I can’t take disability leave like other AS patients end up doing. I couldn’t even do bed rest right now with this chest infection because they are all home and with hectic needs. I can’t even send them for a walk because my littlest angel refuses to go anywhere. So much for the doctor who yelled at me for not resting.
Please just answer the question I ask. More than anything, I want your children to be healthy and that’s why I ask how they are, not what they are about to do or going to do. The activities? Those are extras and bonuses. And most days, I don’t need a reminder of that when I’m gasping just for air, wishing for their neurodevelopmental health.
Most days, I need a hug. My body is failing. It’s really frightening to be told by a specialist, “Well, there’s nothing more we can do to treat the lungs because it’s AS causing the decrease in function…Any virus or infection is a matter of life or death….Please purchase N95 masks. Ask the pharmacists for that kind of mask to wear in enclosed places.” It’s like a small death sentence- always living in fear. Worse now when I’m not even able to try slow the AS down because I’m sick. (No injections till my chest has recovered.)
But…My children are getting older and stronger and WORSE. I need a hug. Not a reminder that your lives are so unlike mine. I want to relate to you as a mom. Without the reminders that unlike you, I’m a special needs mom and you’re not.
I love you. And I do ask about activities when I’m able to bear it. Everything in your life matters. And so I ask for that one small mercy and thoughtfulness. That you answer only the question I ask, and tell friends like you, friends in your shoes, about the things mothers in your shoes get to do. Things I see slipping further and further away while moms like me do therapy and screaming and meltdowns and pain, wondering what will happen when the four year old child who hurt me is bigger, older, stronger than me.
I don’t want to say “Dear mom,” because I’ve seen many caregivers of both genders. I’ve seen very dedicated dads, and extremely protective grannies. Remember how the autism workshop I attended had many grandmothers there, wanting to help their autistic grandchildren? So no, this is not a dear mom letter, it’s a letter for all those who love and care for autistic angels.
You are shocked. You are shook. You suspected but hoped for the best. You know that disability makes life harder. That’s not the dream you had when you imagined being a parent. And let me be specific. I mean this letter to be for those who love children who aren’t able to express themselves clearly. It’s for those society misunderstands or looks down on the most. The ones people assume can’t reason, can’t think. The ones some parts of society views purely as a burden.
My son was six months old when I confidently stated he was autistic. He wasn’t making eye contact, he didn’t babble in his two years. There was just silence. He hated touch. He hated life. It was just too overwhelming, those sounds, smells, lights and feelings on his skin…
But today he speaks, he more than babbles. He touches, he smells, he appreciates, he loves with his whole heart.
Or, what if you’re the mother of a child like my four year old? What if your baby did develop ‘normally?’ You definitely didn’t think anything could go wrong with his or her development after 18 months of bliss. They were meeting their milestones, smiling, hugging, giving baby kisses, interested in you and their surroundings, loving their siblings’ attention, reaching out to you, to them. Love was so evident.
Until they didn’t do any of that anymore. Silence filled the air. It was heavy and loud. The smiles disappeared and the kisses vanished. You no longer seemed to exist. Where was your baby? Where is your baby? Who is this current baby? You never imagined having a child that stops to feel the ground you’re walking on. You never thought your smiley baby would not look you in the eye. You never dreamt their smile would ever disappear. The bond she had with her siblings disappeared, as seen in my main photo where my angel turned her back on her twin sister when she went to sit with her. Will your old baby ever come back?
I don’t know. I can only tell you that she or he might yet surprise you. My child is not the little two year old who was diagnosed. She didn’t want us touching her. If her twin sat next to her, or tried to touch her, she pushed her away- hard. Her words disappeared. And then for months after the terrible silence, we only heard crying and songs, oh, she sang. But now at age four, she actually not only doesn’t push her twin away, she even pushes herself forward in the bath, making sure as much of her legs as possible are touching her twin’s legs.
She even goes out to play with her siblings. Something we never imagined her doing. No, she doesn’t play with them, but she seeks their company. They feel a connection they thought was lost for good.
I don’t have my old baby. This one is hard to handle. She has terrible sensory dysregulation. She can’t tell me why she’s miserable so often. I thought she would have stopped crying by now. But ..she’s not the baby that was developing typically. She can’t tell me what’s wrong. She breaks my heart more than a speaking baby would because I don’t know what she’s thinking, this one is a mystery most of the time. She’s not the baby I had and she won’t be.
Autism is forever. But so is my love.
And autism doesn’t stay looking the same as it did.
So comfort yourself with that. Your two year old, three year old, six year old is not the autistic they will become. There is always, always room for hope.
We went from no words, to words asking for cereal, milk, soya milk, grapes and ice lollies. For us, she’s reached PhD status level! And that’s the beauty. Appreciate who your baby is even when it’s hard, who they might become will then be a bonus. I didn’t need words to be spoken, I just wanted communication. Even nodding would have been ok. (Ok, I still would prefer nodding too so I know I’m on the right track when I have to guess what she wants. I have to be real!) We didn’t sleep for three years until she was medicated for her extreme moods. And it’s not plain sailing even now though things are better, don’t think I’m telling you THAT either.
We had a horrific doctor visit today in fact. But as she screamed and everyone turned to stare in that hospital reception area, I held my head up high.
This is my baby and I love her with all my heart. What matters most is not who she was, but how to help her be the happiest version of her current self she can be. And that meant (for us specifically) getting away from the automatic doors and lights and strangers today. Tomorrow, it will be a different battle. But we will fight it together.
And I see that same strength in you in your weakness when you come online wondering where to find a school for them. It’s the same weakness I have. I am desperate for help. I marched with Autism Western Cape, begging the government to help us. The strength is in your deep love. You’re not giving up even though it is so, so hopeless and so, so lonely.
May the fire of your love for your child keep burning strong and bright. Keep advocating. They might not show you they love you in the way you’d expect it hope for, or in any way at all, but they definitely need you. And that’s what parenting is about, isn’t it. Being what our children need. Autistic or not.
I think I’d have made a terrible ‘normal’ mom! I just can’t do it. It’s not in me. Those mums who in their presence of their tweens and teens would tell me they couldn’t homeschool as they can’t stand being with their children? I don’t get it. Those children are old enough to turn on their own programs, read their own books, help with chores and have conversations that have a beginning and an end and make sense to both parties.
My life isn’t like that. My girl pulls me and demands food too often. This week, I lay down on my bed with a huge sigh of relief and not a second later, she burst into the room and immediately came to my hand to pull me. I told her, “Nope. No way! I need to rest! I’m not going with you. Come sleep with Mommy.” She screamed “Shleep!” Then daw” and ran out.
Then she returned with a doll! Ran out again and fetched her teddy. And so we ALL lay down except..we didn’t. The dolls did! But she has no concept of safety so didn’t realise that she was constantly right at the edge. And wouldn’t budge when I tried to move her towards me, away from the edge. It didn’t work. Lying down wasn’t happening as I was sitting up trying to roll her over, of sliding her bum over..,Lying down was just as hard on my body as not lying down. So I got up.
Her behaviour in always wanting me to go somewhere with her is the reason we have been looking for an autism learning centre. It’s for the sake of the other children that I want to send her to a more therapeutic learning centre.
So why does it feel like I’m sentencing her to a prison term? Why am I not following up with the director who I’m meant to be seeing who runs a centre that would suit her? Why do I feel so torn? When she backs into me expecting a hug, my great melts. When she deliberately looks into my eye and smiles, i I want to hold her forever. And that’s the problem.
I enjoy her. It’s not ALL gloom and doom. And sometimes she does wonder outside with the others before coming back in to look for me. And even the food she’s always wanting? I love seeing her open the correct cupboards and drawers to get herself a spoon and bowl.
I enjoy being her mom too much. I enjoy her presence. I enjoy her. And that is why I am very relaxed. Maybe the director will e email today. And maybe I’ll make a plan for her. But I’m not sure she’d survive
Her dad feels it too. He doesn’t know whether she would even thrive without mommy there. My angel needs mommy. And mommy seems to need her angel.❤️
We went from random unusual sounds and NO speech at all, to words and not only single words, sometimes whole phrases and sentences! Today she came to me and proudly pointed at her ears while shouting, “Ee-yors.” I responded, “Yes! Ears!” Who cares about pronunciation right now when words are so new!?
Caught her running to my room…
And after she entered, I was rewarded with more!
And “Let’s go!” Not sure where to! Her first time saying that.
What is so exciting to me is how she herself seems to find her ability to speak amusing and amazing! She just says random words too with joy and abandon! It’s like the words ‘taste good’ to her. It’s lovely. It really is.
But it’s a privilege I can’t post elsewhere. I have an acquaintance who has my number and their autistic six year old is not talking (yet.) My girl is four years old. They’ve been everywhere for help and he has been going to special schools (Due to aging out , he’s actually leaving the one we wanted but has no space for her.)
I know how it hurts -for a lack of a better word- when someone you were walking with suddenly runs ahead and leaves you behind leaving you even more isolated, even when you know they have ‘severely autistic’ (Neurologist’s words, not mine) challenges to deal with, like behaviour that’s inexplicable or the insatiable desire to keep eating. I can’t do that to her, I can’t throw our growth in her face when she’s wishing for it for her child. So, I share my surprise here. I pray it continues. I hope it progresses till she can tell us what’s in her heart, her mind, what bothers her, and what she likes. When we go out, to have her tell us WHY she’s screaming would be such a blessing. To know what makes her uncomfortable would help us reduce the discomfort, protect her from the places or smells or sights, and create more safe spaces for her. Oh, that would be such a lovely thing to happen.
Her twin-she will scream and cry. But then she will tell us that she doesn’t want a certain song to start playing until she’s there in front of the TV instead of with me in the bedroom. We now know to have her sister call her if they’re about to play music so she’s there. We know why she’s crying.
What a dream come true if the same could happen for her sister.
Keeping hope alive and VERY grateful for where we are today.
Alright no. I couldn’t keep it in. So I hid the mom instead. I post a bit about AS (Mostly what it does to others. Only two people know I’m dealing if with digestive side effects from Enbrel .) It’s only fair to post a bit of my good news.
There’s no time when she’s awake and sees me, that I won’t be pulled somewhere. I don’t know what the future will be like when she’s older. But I do know I hope she STOPS! She’ll pull me right over with her risperidone weight! 🫣
I came‘this close’ to crying in front of a plumber just now.
AS is a disease of pain. But you get flares where it’s like the whole world’s pain descends on you. That’s today. After a hellish night where it felt like I sweated all night and was therefore made cold when my nightie cooled down, only to get hot and sweaty again, I woke up to a morning of hell.
I do think the NSAID is helping. My elbow and peripheral joints haven’t been as bad. THEY haven’t kept me awake. But good lord, my hips and SI joints are screaming and yelling and screeching in pain. I ended up sending the behavioural optometrist a run down of things my poor angels are struggling with and how I’m therefore breaking their exercises down into smaller steps, and telling her how the exercises are hard on ME too. I can’t bend over and push and pull. It hurts. Kneeling to push and pull (a variation that has to be done on tiles to make them slide up and down) also is a killer. I explained that I have AS and it’s currently not under control. (To put it mildly.)
I gave the children their school work and went to my room and while asking a friend about their sibling, couldn’t take it anymore and wept, asking her to pray right at that moment. It’s not only the bone pain, but something the gynae did to me in order to test something. It’s a cluster duck (heh heh) of pain.
So, the plumber wanted to see me just as I was at my worst point, where I was in so much pain that I couldn’t hide it. So I hobbled off the bed, wiping tears away and hoped I could manage. He could obviously see the pain as he apologised for asking for me.
What about my “funny baby?”
We have a plan. When she doesn’t see me, Twin B is fine. She keeps herself busy and does her own thing. But if she thinks to come open my door or sees me, then it’s game over. I can’t finish my ironing or sweeping or whatever it is I’m doing in peace. She will grab my hand and take me to my closet and want me to pull things down for her. Some of which are markers that she will carry around after removing their lids. Yes, you can imagine the mess. So I try avoid that.
This time, she spotted a box their combined birthday gifts came in, and wanted it. So for the sake of peace, I brought it down. She removed some bath soap that was given, and because of the shape, thought it was toothpaste. She took me back to the kitchen and wanted me to bring her toothbrush down. (That’s how I knew she thought it was toothpaste.)
I took her back to my room, with her protesting all the way. I told her we’d wash her hands. She shouted in anger, “Wash!” And cried even more. But I took her anyway.
I picked her up and sat her on the side of the sink as she cried, turned on the tap, put the soap on her hand and boom, tears all gone! She was so happy! Totally in her element. I ended up having to put the hand towel over her lap as she was now wetting her skirt and leggings. Then she started splashing her face and ‘washing’ it. It was too cute! So much for those initial tears!❤️She also tried to drink the water by sucking at her fingers.
Eventually, we were both done and both happy. And she stayed happy for the next hour❤️
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.”😉
My three year old is a huge sensory seeker. She won’t sit still for love or money! When I’m teaching, she’s either trying to pull me away to go get something to eat, or she’s spinning in circles or running around. She only sits for evening worship.
So, how do I get more of her attention? Because when she’s running, she’s also usually making noise too, vocal stimming, so I doubt there’s much she hears. And so I thought, “How about recording myself and teaching using video? That way, she CAN’T pull me and they all get to still hear my voice!”
I did it.
It has worked. And it works for everyone. The children answer my questions when I pause after asking it. And I get a bit of rest.
It’s a win win.
Special needs forces you to change how you parent. Screen time is ‘bad.’ But for my children, it’s the only way they really learn and remember things. And with dysgraphia a very high possibility for my son (the ‘inability’ to write, and my girl’s struggles with writing, typing is better. So, screen time it will be.
They said I should write a book 