I Need to be Compliant

Just a small glimpse of this morning’s autism moments. It started in the morning. Now, let’s go back. I’m on steroids, must use my inhaler four times a day till I’m healed, instead of the normal four, pain meds, antibiotics and glycerin to coat my mouth sores. And I am not being very compliant. Not by choice.

In the morning, this strong one refused for her biggest brother to dress her. She came and got into my bed soaking wet with urine. At first, she wouldn’t even let me change her. I hadn’t taken my pain meds for the AS that is now running free through my body while we wait for me to recover so I can use it. Oh yes, the tongue!? It’s high inflammation in my mouth. Yuck.

So I’m moving and hiding pain. Bending is bad under normal circumstances, and diaper changing should not be performed by me at all. But what else could I do? I broke my lungs and bones even more after she eventually allowed me to change and dress her. She’s still got a blocked nose so that’s not been helping her feel ok. I couldn’t even finish dressing her. I ran out of breath before I could do her upper half, so I let her stay in bed and covered her up and turned the heater on while I contemplated my misery.

I ate breakfast at around 12:30. I took my prednisone after that. Of course I’m wide awake at midnight! It was too late!😫But more importantly, being mother and teacher means you forget yourself. Yesterday, I only used my asthma pump once. The night was sleepless with wheezing and coughing and breathlessness.

My poor friend had a panic attack when she didn’t hear from me yet her messages were open on my side so they seemed to be read but not replied to. It made her worry big time. 🥹I was having a panic attack of my own. A stress attack! I was so helpless and sad! While unbeknownst to me, she’s reaching out to me, I was crying out and wishing I could Philip (when he appeared and disappeared from the eunuch) her from her job and make her appear here to help me. My girl just wouldn’t let me lie down and help me try ignore the AS pain! She was out of sorts and so was looking for nothing in particular. Pulling me here and there but not knowing what she wanted. I tried to break free as the pain was bad and I was so tired. Just a few minutes before that, my leg had given way in the kitchen and Micaiah had offered to be my human walking frame. I was in agony. Lungs, bones, bad sleep thanks to a very loud ship horn that had been going at around midnight for four hours since Saturday night. And just malaise from being sick.

Plus a large dose of penicillin induced diarrhea.😫

I was (am) unwell but couldn’t get a rest. Demoralised. The only centre that takes kiddies with her intellectual level isn’t for autistic children. I have nowhere, no options. The sense of helplessness and sadness was so overwhelming that I threw a box into the wardrobe and screamed in frustration, bringing my poor boy running to ask what’s wrong.

I don’t lose it like that. I can’t cope. I cannot cope. I didn’t use my asthma pump four times today and it’s almost midnight.

If I lived alone, or if there was a special school for non potty trained autistics she could attend, I might have had four doses today. I’ll try tomorrow. My life depends on it. As do the very children who cause me to scream, depend on ME too.

I truly believe my friend sensed my internal screams wishing she was here to save me. Help. Please help, Lord. I cannot do this. Find me a centre. A good one. I’m even willing to send our aide with her. We just need to find one. Pray I do.🙏🏾😭

The one positive? Remember how I mentioned that people of both genders took care of women who were disabled and in adult diapers, caring for them with their sanitary towels and all? Our facilitator aide is a daddy of two girls. In the late afternoon, he helped change my girl for me. Boy was I thankful. I have help while we wait for someone to replace Vi. The pickings have been slim. That’s a story for another post!