Tag: autism meltdowns

My Daughter Hurt Me

Grace by any other name4 Comments

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.

Presume Competence

Grace by any other nameLeave a comment

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

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

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

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

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

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

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

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

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

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

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

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

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

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

See What I Mean? ☺️

Grace by any other name2 Comments

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.

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?