For a While

I couldn’t walk.. for a while today. Last week, I took my walker out to the garage. I hadn’t used it in months! That’s how well Rinvoq is working! But today, I had to ask my children to bring it in, all because of their sister.

As you know, she has had a rough few weeks that have been progressively getting harder and tougher on all of us. She has been screaming randomly, crying for prolonged periods. And we don’t know why. Before, she was crying because she was having a tantrum-she wanted something and if we couldn’t make it happen, the tantrum starts, stuff like that. This was like she’s in pain. It was horrific. She was so loud that her aide could hear her while parked across the street in his car, our house closed up as tight as possible so as not to bother the neighbours. When she starts, I go round the house shutting all doors and windows.

It is horrible. It raises my already existing anxiety and stress from raising multiple special needs children by a lot more. I already don’t want to get up and face the day as it is! So, yesterday was one of those days. Multiple times a day, for long periods. Children discomfited by their youngest sister, all trying to figure out how to “Stop her!” I had to try comfort her while telling her irritated older sister that she wasn’t doing it on purpose. I gave her pain meds, I gave her meds to stop stomach cramps. I wondered if it was the Ritalin causing it. Was it the side effect of stomach pain and nausea? Or headache? What if it’s pure emotion caused by it? Reddit threads are full of adults on Ritalin unable to regulate their emotion and suddenly crying and feeling extremely emotional.

This is what she did to her poor sister’s lip. Oh my word this life is soooo hectic. Speaking of my 11 year old. Poor girl has gained massive amounts of weight. She was so hungry she was waking in the middle of the night and making noise looking for food. I took her off her antipsychotic in case it was the cause. But then today her emotions were .. psychotic. She was crying for no reason. She was very angry. The very anger that had made us put her on the medicine. Irritable. And by this evening, she’d told me she wanted to kill her father – twice.

So, back to Abilify she went. I’ve emailed the paediatrician to see if there’s any other option. Risperidone gave her that horrible dystonia where she couldn’t control her muscles including her tongue. Shaking, head pulled down sideways, tongue out her mouth. It was awful. I don’t know what else can be done. But murder? Not an option!

I had given her screaming sister only half her Ritalin dose yesterday. But nope, the discomfort that she was feeling – physical or emotional- didn’t care about the reduction. She still screamed. One time she aimed for my eyes. It was terrifying having to quickly get jk before she tried again. Another time, she came and sat on me. Mainly on my right leg. And that weight, is what has killed my leg. Also, I changed her diaper too. Her father gone to Tokyo to go run a marathon, brother too sick to even count as existing when it comes to handling his siblings. Pain.

And so, today, I struggled. The pain, the weakness took me back to those times when I’d almost fall. I had to get my walking frame and use it.

Thankfully, it ended after three hours. By the time my talking twin wanted me to exercise with them, I could walk. And I could exercise with them just as she was about to start crying because her older sister was telling her they don’t need me. Needed. For comfort and for exercising.

They were eating avocado. Sister in pink told me she looked like she’s autistic because of the noise canceling headphones. She didn’t see the irony, given her sister is autistic!😅

Today? There’s been grunting that usually leads to the uncontrollable screaming but so far so good. I hope she stays stable. And I hope her 20 year old brother who had wanted to avoid the doctor, starts recovering. He’s been given steroids, antibiotics and other meds. “You were right, my sinuses are very inflamed.”

And oh I pray so hard that Sabbath won’t be as awful as last Sabbath.

Please hope so with me!

My positive of the day is again, how in love with learning her twin is.

Meanwhile, she leaves her poor siblings totally blank. The other day she felt we were leaving her out and came barging in telling her siblings that she learnt about Hasui Kawase who was Japanese and he did landscape paintings and cherry blossoms which were very beautiful and then his paintings were destroyed in an earthquake and then he died.😅🤣

She had already lost them at his name. They had no clue what landscape was…

And no interest in paintings and Japanese history.

When our Maths lesson ends, she asks if we can continue later. Thankfully for my body, her ADHD takes over in the afternoon and she forgets she’d wanted to continue with Maths.

And nope, the screaming has begun. Oh well…

Hey, at least she’s not screaming in her bedroom instead of sleeping. She ‘only’ screamed for about 10 minutes this time. It’s a semi win.😅