As a parent of a toddler on the spectrum, I am used to having bad days. I usually take them in my stride, and spend a lot of time at the park or give Michael to his therapists. But then there are what I call Michael’s Stephen King days. The nightmare days full of horror and unspeakable things. One of my favourite quotes by Stephen King is ‘Monsters are real, and ghosts are real too. They live inside us, and sometimes, they win’. It takes a lot, but recently the monster in me came very close to winning.
Recently, I had a Stephen King day with Michael. Stephen King once said that sometimes there is no difference at all between salvation and damnation. Michael proves him right nearly every day, but especially days like Friday where he was unwell.
Michael is my salvation. He is the happiest, most wonderful part of my day. Michael fills my days with love and laughter and I love myself when I’m with him. He has taught me so many things and inspires me all the time to try harder than I ever thought I was capable of trying. I didn’t think it was possible to love someone the way I love him, all the time. There is nothing I wouldn’t do for him. Most of my time on this blog I concentrate on all of this – the love, the happiness, the kisses and hugs. I think Michael spends a minimum of an hour on a normal day just hugging and kissing me. It’s wonderful.
At the same time, he is my damnation. I have thought horrible things when up with him in the middle of the night. Or during the day when he wouldn’t stop crying. My time with him can be torture, literally. At one point he woke up every two minutes all night before I sleep trained him. I’m sure if anyone could read my mind when I was up with him at this time, they would have taken him away from me and never let me anywhere near him again. Then when I caught up on my sleep, everything was rosy and wonderful again. Motherhood is so weird.
The Importance of Patience in Special Needs Parenting
Ever since I was a little girl, I’ve always known that I’m very patient. Whatever other strengths and weaknesses I have, I know I don’t lose my temper. My husband used to have a game, when we were dating, of making me lose my temper. The closest he could get was to annoy me by deliberately making mistakes in the names of my favourite novels. A truly evil thing to do.
This has been useful in child rearing. Raising children is 80% boring, mindless home tasks like laundry, dishes, and cooking (although I actually love cooking). Making sure their sheets and towels are clean. A lot of it is giving them opportunities to play and learn, at home and out, while keeping them alive. But the hardest bit for me is listening to constant whingeing, not losing your temper, dealing with it, and moving on.
When Michael whinges for absolutely no discernible reason, for hours and hours, I start to feel the anger rise up. I hate being angry at him at these moments. Yet I am really angry at him and at life for doing this to me. He doesn’t understand, I tell myself. He is having a much harder time than me. But the anger remains, no matter how hard I push it down – the only thing that can get rid of it is rest.
The What The F* Friday
Last Friday was a day that combined both salvation and damnation in one.
It started when Michael woke up at 11:30. In the evening, that is (technically it was still Thursday). Two hours after he fell asleep. Then he was up until about 4:00am (thankfully, my wonderful husband took him for the last hour and a half of that). Why? Because he had a slightly blocked nose and that made it a bit harder to sleep. That’s it. But being a man, he couldn’t deal with the slight discomfort this caused him and decided to just not go back to sleep.
Anyway the saga continued. He fell back asleep at 4:00am and got up at 7:30am. He was then very sweet and cute as long as my husband was at home. As soon as he left, and I took him to the shops, he started whingeing again.
The Rise Of The Mummy Monster
You know that really annoying low key whinge that sounds like a mosquito right next to your ear? Michael did that to me. And it went for hours, except when it escalated into screaming. I tried to put him to sleep. I rocked him in the pram. In the cot. Nope, he continued to test how many consecutive minutes he could scream without taking a breath.
I fed him a nice lunch. Changed two poos (both fine, no tummy ache). Gave him Panadol in case he had a headache. His appetite was great, and the second he was in front of an iPad he stopped crying. But other than that, nothing worked.
I knew he was just tired and needed a nap. But his resistance levels were extra high and I just couldn’t get him down. And that whingeing was so irritating!
My usual rule with naptime these days is, it’s optional. I try for a bit, then let him run around for a while, and repeat. This time, whatever I tried, he screamed. Whether he was in the pram or out of it, in the cot or at the park. I was reduced, after a couple of hours of this, to nearly screaming myself. In fact I told him to ‘shut up and stop whingeing’ in public. I don’t even do this in private, so it was shocking to me. Who shouts at an autistic two year old, especially one who is sick and has had about five hours of sleep? Well, me, apparently.
A Fifteen Minute Cup Of Tea Saves Me
Then when I got home, I tried to put him in the cot and while he continued to scream in there, I put in headphones, listened to very loud music, and had a cup of tea. And can I make a confession? I actually didn’t care that he was screaming. All I cared about was that for this fifteen-minute period, he was safe, and I couldn’t hear it. It was my version of putting him on silent. Eventually when I got my will to live back, I took him for a walk to the park in his pram, where he proceeded to crash. Obviously, at the worst possible time of day.
He fell asleep at 3:30pm. Then woke up at 4:30 screaming again. This time, I was fine since I’d had an hour’s rest. I cuddled him for an hour on our rocking chair, while singing ‘Twinkle Twinkle Little Star’ over and over (badly, since my throat was still pretty sore from my cold as well). He pressed his super soft cheek against mine and dozed while I rocked and sang. And smiled at me. It was one of my favourite moments with him.
Why Do We Have Stephen King Days?
Partially Michael has these days because he doesn’t understand when I explain things to him. I can’t just tell him ‘I know your throat is uncomfortable, this Panadol will help,’ or ‘try to lie on your back on these pillows’. I can’t say ‘it’s just a cold and in a few days you’ll feel better.’ All he knows is he is uncomfortable, everywhere, in every position, and he wants to scream. Then when he screams, this makes everything worse, and he wants to scream more.
But it’s also because, like a newborn or a very young baby, he has no way of communicating these things to us. We are teaching him to communicate basic needs, like food or water. He is learning to request favourite items. Things like pain, fear, and anxiety though I have no way of teaching him to understand or tell me about. He can’t even point to his tummy if it hurts because I have no way of teaching him to do that, at the moment.
Communicating without words
As a mum of a special needs toddler, you get really good at reading their minds. When Michael is crying, I have to understand if he is scared, in pain, sick, or just upset for no particular reason. If it is pain, I have to guess everything from external symptoms. Does he have a fever, is he crying in bursts (indicates tummy cramps) or constantly (more like a headache). What is his stool like, how is his appetite, can he swallow without pain. Yes my life is filled with thrilling mysteries these days. Life or death mysteries, since if I get it wrong and don’t take him to the doctor when I need to, it can have tragic consequences. Yet above all, I need to stay and just be there for him. That is my job as a mum.
I survived that day, and will live to fight for the next one. I was there. So I’m going to end with another favourite Stephen King quote:
“The place where you made your stand never mattered. Only that you were there… and still on your feet”