Tag: global developmental delay

I Know what I Want for THIS Mother’s Day(s)

Grace by any other name2 Comments

I want to do more! You know how it is. All the things you want to do and only remember when you’re busy with something else…

Like noticing how untidy the garage is when you’re busy hanging damp washing in it.

As every mother knows. Well, mothers who don’t have live in nannies, that is. As every mother knows, mothering is your calling and job. So when you have four little ones with autism, ADHD, intellectual impairment and nobody else to talk to and plan activities for them, you don’t have time to do those things that irritate you.

Add active AS, and you don’t really have the ability to fix those things that irritate you either.

So what I want is to go into remission. There are people in my Rinvoq (My newest treatment attempt) group who are in remission. That means no pain whatsoever and they’ve almost halted the disease completely. The CEO if the large retailer, Shoprite said in his book that he’s been in remission for 30 years!! And he knows that when the AS starts being active again, he can find other treatments. I can’t imagine having no pain for the next 30 years!! By then I’d be 75! Better now than never, right??

I want to stir food and not be in pain. I want to lift light shopping and not have my husband ask what’s wrong because I forgot he was there and so didn’t hide the grimace the pain in my shoulders put on my face.

So I tried to do one thing I wanted to do.

I put the kiddies to sleep first. The first one to go to bed is this non-speaking angel who threw a very tiny fit because I took her for a drive that was too short. (third drive of the day) I put their soy yoghurt, peanuts and raisins and peeled and separated tangerines on the table and RAN away so she would not pull me. She stopped her half hearted crying! And by the time I came back out to finish off medicating them, she was happy again.

This was sent to me last Friday when I was hiding from having to do the second drive of the day. (See a theme?) She did the arranging of the soft play therapy toys plus her now too small car seat on the treadmill ☺️☺️

I want to enjoy more of that. Her crazy creativity and moments of peace.

I got a lot of ‘crazy’ tonight. She was in her room laughing and laughing on her own! For 25 minutes straight, my girl laughed and laughed! Then she slept.

The next to go to sleep was her twin.

I set up her electric hot water bottle, turned on her walk heater, tucked her in and told her I loved her.

Two to go.

I forgot about their meds. I hope their dad medicated them. I got busy! But I did give my ten year old an activity book to do before lights off. Then I went…

And I’m now lying here putting my hot water bottle on my very sore shoulder and then putting it on my lower back. All because I did something else I’ve been wanting to do.

I went to the garage, knowing I’d already done grocery shopping and breakfast and lunch. And knowing I should therefore REST! But then, the washing was getting damp in the waning afternoon as dew fell on it so I had to drag my sore body out.

And then I saw it.

The thing I always want to sort out but only notice when I’m busy with something else.

The garage

I focused on this area with the box full of damp books. Damaged books. Damaged by the children. And broken toys and some that could be salvaged. I took all the moldy books and papers out to the fire pit outside. Threw away all broken prams, flat balls nobody uses, all of the stuff that irritates. Kept the dirty cups for sand play. Sorted the “stuff” out. Typical and normal night.

It was fun. Earbuds in so I could listen to music without having my son (Who always comes on the drives his sister asks for) asking me what this word means or asking what language I am listening to while I’m trying to sing along.

I want to be able to do this every day, and not suffer afterwards. Not to have to choose between putting my hot water bottle on my shoulder vs on my lower back. I want to be able to work and know that tomorrow, I will NOT be in worse pain.

I want to be able to use the extra energy Rinvoq has given me without fear of what using that energy means to my pain levels.

I want to be much better.

I want to be able to do all the movement activities I plan for the children but don’t get round to because teaching and doing vision exercises are too much as it is.

I want to be a mother in the way I used to be. I want my day as a mother to be as full or as empty as I choose for it to be. I want to stop doing something not because if I do more then I’ll be in worse pain for more days, but just because I feel like I’ve done enough.

For now, I’ll be thankful that I at least had ENERGY to get rid of everything in here and that was in front and around it.

But I want more.

Is that too much to ask?

But also, I want to be thankful that most nights since I started this ‘not so good for my heart’ treatment, I’ve slept better than I have in 40 years. Counting from when the bone pain the GP said was “just growing pain” started keeping me up at night.

I want to acknowledge that somewhere in this horrible world, there is beauty.

Stolen Money

Grace by any other name1 Comment

I am desperately trying to find educational, or more importantly, therapeutic centres for my children. Places where they can wear what they need – instead of being bound to a uniform of specific lengths and material.

I am desperately trying to figure out how in the world next year will look. Paying for two university students is no joke. We have no clue how that will work. Paying their mortgage for the townhouse we bought them in a secure complex- how will that work out from our budget?

Oh. No. Let’s go back.

We haven’t bought an apartment. We tried to buy scammers stole our deposit!

The ‘estate agent’ sent through the correct offer to purchase documents showing that the seller had signed after we signed. And sent bank details for the documents.

Only the next day when she asked whether the deposit had indeed been paid did my husband notice – when she again sent proof that she had sent the bank details so didn’t understand why we hadn’t paid-that her email address was not correct anymore and neither were ours. The thieves had swopped a letter here and there so it looked ok at face value. But it wasn’t ok. The money had gone into their account.

This was last week Thursday night and we are still waiting to find out if we can get our money back. He went to sign an affidavit with the police. Then got a case number and the agents have done their portion and have spoken to officers on their end. And now, we wait. The bank knows.

So let’s PRETEND the purchase has happened. How will we pay their mortgage, our mortgage, their pocket money, grocery, laundry soap, crockery, cutlery, etc etc , internet, university fees, car repayment, car insurance (We’d hoped they’d each have a car but they’ll have to share) and all my medical costs, the kids’ medical costs, anything that comes out of the blue and our own fuel as well as the teens’ fuel costs and all other costs?

And that is why I am stuck.

I can’t afford to hire a proper au pair. Those people charge an arm and a leg. Might as well be sending two children to an expensive learning centre- something we already can’t do now, even before the teens’ leave. I can’t pay rent for someone to live close by and also give them a salary to be my assistant teacher, to be my children’s supervisor and watcher and nappy changer and bather. And I can’t build a granny flat in the yard because that too is too expensive. We would have little to eat, and nothing left for my medical needs.

I am stuck.

So, so stuck.

The only thing I can do is cry out to God. I’m in abdominal discomfort from the colonoscopy and gastroscopy. And I’m tired. So, so tired. The screaming, the pushing, the pulling, the soiled toilet seats soiled by an almost ten year old girl, the screaming, the nagging, the sentences I must reply to even though I know they won’t even make any sense so I won’t be able to answer them anyway. The constant busy-ness, the planning, the recording, the sitting, the pain from sitting and recording, the editing, the lack of time to get everything done in 24 hours and still sleep. The pain, the limping, the heartache at each child’s specific problems, the wondering, the anxiety, not knowing what to aim for, planning for more assessments, appointments, traveling, fuel, knee pain, hip pain, fatigue just from folding a t-shirt, arms too tired to fold more. The ironing, the picking up bowls, more bowls, cups, cups inside, cups outside, the laundry, more laundry, bowls in the garage, bowls on the grass, spoons in the drain, toys on the trampoline, socks missing partners amongst the flowers, sharp knives mysteriously found outside, crying, bowls on beds, split raisins, spiky milk, hidden old food, money food hidden in my car, pulling, too much eating, worrying that our non speaker will die from obesity related illnesses, fear that she will kill me one day, hating that I can’t take all the children out because she spoils their joy, hating that I can’t take any children out anyway because of my body.

Toilet. Can’t use the toilet in peace. Teen son comes to ask. Talking twin daughter bangs and screams. Shouts and cries. Non-talker screams and cries and if I dare forget to lock and I’m in there to use the loo and make a call in the relative quiet of the bathroom, she comes in, pulling me, pushing me, then giving up and sitting (very heavily) on me..on the loo. Open the door, children waiting and waiting for me. No peace. Night means research, planning, preparing, editing, recording no, reading aloud, searching for extra to add…

Hoping..hoping the children get back safely from their nature trip. Sad. Unseen. I have nobody here to speak to, cry with, plan with, seek help with, hug me, comfort me, pray for me, wish things were better with. I have to be strong. I’m the only mother, the only parent they have most of the time.

I speak out my fear of the future to an adult in the house . “They won’t be like that.” I get told And I think, “ They are already like that now! But I’m the only one who lives it day after day after morning after afternoon after evening. Can anybody hear me!??”

I am sad.

But I am never going to be broken.

The same woman who sent this message below when I cried out into the ether, is one who too will never allow herself to be broken by any human out there.

I may never get any rest while living on this earth. But I know who will be extremely happy that heaven has come at last and I can finally have the rest I never received on earth. One who will rejoice with me and for me. One who feels for me with all her heart and soul.

I am sad. But I am not sad alone.

I am thankful for technology. And I know that unlike many who make empty promises, this message writer would deliver, because even without making any promise, she just gave. Freely, willingly, of the VERY little she and her precious family had.

I’ve had people not only love me, hear me, but also care for me, sacrifice for me. Cook for me, walk at nine o’clock night to go find something, anything that would stop the violent post-op vomiting that wasn’t stopping.

I used to ask God why He let me give so much- time, energy, prayer, thought, care, worry, money, my own clothes off my own back, food, blankets- yet never receive the same love. What was wrong with me that people could use but never love?

Nothing.

He was just waiting for a time when I would need it the most, for a time I’d appreciate it the most, when words would be just as heartfelt as actions. That time is now. I am on my knees. But I’m not alone.

NOW He Gets It

Grace by any other nameLeave a comment

ALL the supplements my four younger children are on. One is SleepVance to help my one four year old sleep. She will stay up till 1am, or wake up at 3am. So I have been buying that for her, and what I didn’t add in the picture was my nine year old’s melatonin. She is on 5mg after the paed suggested the original dose was too low for her and she perhaps needed 4mg. I can only find 5mg. Works ok!

One was chewable zinc, but my non- talking twin hates that specific gummy so I bought the syrup for her. Right NOW (the picture was taken two months ago.) they are all on the liquid one anyway, as it contains more zinc per teaspoon at a lower price, than the chewable gummies. It’s less pain on my back to dispense tablets than it is to bend down to each child and feed them a spoon of syrup. But yeah, the magnesium and zinc are cheaper in syrup form.

So, these are all supplements that research claims help with certain aspects of ADHD and autism. There are also essential oils but it…I don’t even know if THESE are helping, to add extra is just pointless. Mood, ability to think, reasoning, calming…You’re meant to ‘overdose’ them as it has been seen that most of these children lack these nutrients in the amounts non neurodivergent people have, but that would be even MORE expensive. And three are on prescription meds too. And even with these supplements, I don’t give every single one every day, to try slow down the usage. I DO give Omega 3 every day. But again, not in the huge amounts they state.

Why buy them?

Desperation. I struggle with the symptoms more than the children do. It’s emotionally taxing, and now that my husband has been on leave, he FINALLY gets it. He finally sees the pain of raising our non- speaking four year old who can’t communicate in a way we understand and wants/takes things that she shouldn’t have, and wants things done that are impossible to do, leading to mega tantrums. (Like wanting to balance an orange on top of a pen and acting as if WE are refusing to even when we show her the things she wants are physically impossible.)

He finally understands the non-stop heartbreak of watching your precious child not able to put you in her world. And it is breaking his heart. I downloaded a playlist of specific classical songs that research has shown helps with brain development. I call it “Brain music.” I play it when the children are eating. Research claims 20 minutes a day would be perfect. I don’t always get that because the very angel worrying us the most is extremely mobile, getting up during meal times and going all over the place.

But I AM thankful that both twins love it! Classical music isn’t always lovely sounding! But my talking twin (A) will start making her constantly present bunny dance, and shouts, “ It’s brain music!” And my non- talking twin stops chewing, and gets this look on her face as if she’s digesting the tunes. With an enigmatic smile on her face. It’s too sweet! It’s like I’ve given them a huge treat.

Yesterday, my husband wondered how much an e-speaker would cost, so when the twins have quiet time in their rooms, we quietly pipe brain music into our non- speaking twin’s room, “for my poor girl especially.” Now he gets it. Now he gets it.

I can never explain to those who don’t live it, the constant strain of having all these children with significant challenges, but especially having HER- a child we so desperately want to reach but can’t.

I tried to join them for family worship two evenings ago. I stopped because both twins see me as the FoodMaster, constantly asking me for stuff to eat and drink when I pray with them and when I put my talking twin to bed. They never do that with the others. My non-talking twin grabbed my hand, pulled me and struggled to finally bring out “p-p-peanuts and raisins.” I congratulated her for asking for them! Then she took me to the FREEZER and gestured for me to get her an ice lolly. She has asked for them by name at least three times in her life. But that’s the nature of the game. Abilities she had just disappear. She no longer calls her daddy, “Dinosaur.” But she doesn’t call him Daddy either. I preferred dinosaur to nothing.

But yes, the word meaning issue is a struggle I’ve noticed for a while now. She will say a word. Blurt it out after great difficulty. But what she says isn’t what she MEANS. Like meaningfully looking me in the eye and randomly shouting out, “Dolphin.” I can tell that’s not what she wants to say. And it’s a struggle in my eight year old son too. He will string together sentences that are grammatically correct most of the time, but he has no clue what the words actually mean. And he will throw tantrums thinking what was said meant something else. I ask him when I can tell that what he’s saying is ‘wrong,’ what he means. But he can’t re-phrase. Like when he has just returned from a drive with my husband asks me, “Does dad have driving skills?” What does that mean to him? And of course he does, given he has just driven him. So what does he mean? It’s scary and draining. How do you change it? How do you fix the brain so that you all understand each other?

I don’t know.💔