Sometimes it’s really exhausting being a mum to a child on the autism spectrum. I hate to admit that, but I think it’s so important to be real. To be authentic in motherhood. I do want to be clear though, being exhausted, drained etc never ever means that I don’t want my children or love them wholeheartedly. It’s quite the opposite. It’s BECAUSE I love them with every part of my being that I am sometimes so exhausted. Parenting any child is challenging.
I adore my boy more than there’s words. I’m his biggest fan and also his biggest advocate. I will do anything to build him up. I love this kid more than life itself. He’s everything and more.
But sometimes it all takes a toll on me too. And sometimes things overwhelm me too. Sometimes it’s all too much and I crumble too. But not for long. I can’t afford to because he needs me. The twins need me.
This morning was one of those times. One of those times where the reality of having a child on the spectrum was made blatantly obvious. Where all of the little things added up to be huge. And meltdowns set in.
We had family photos booked in. They do mini sessions around here once a year. Where you pay next to nothing for a quick 20 minute session. Take a few snaps and done.
We don’t really have any family photos because asd. Pretty much. He hates photos. Doesn’t look at the camera. Moves so fast. And then twins. Try getting both looking at the same time. That’s a challenge on its own. And then motherhood. I’m lucky to get a shower, never mind look half human enough for a family photo.
So I’d booked in these photos. Months ago. Even got a discount. Perfect. Found the outfits in their wardrobes. Got the outfits ready last night ahead of time. Hadn’t found one for me but I could find something to hide behind the kids in sometime in the morning.. I even got to have a nice, hot shower this morning and put on some mascara. Winning.
Yesterday Jeremiah had a mini party, more like a play date that went most of the day and then into the evening with a variety of friends over various times (thanks Covid). It was a lot for him. I should have known better. That he wouldn’t be able to cope with anything extra today. But the photos were booked long before his mini party was.
We had surprised him with a jumping castle for him and his friends. This time last year he still couldn’t jump. So now he can and we thought it would be great fun for the kids. (And 2020 has been such a rough year, so we thought we could all use a little happiness) And it was fun. Until it rained and it had to be let down. That was another meltdown for him yesterday between friends arriving.
This morning we got the castle back up and Scott dried it all off. He’d scooped out all the water. Just so Jeremiah could have another jump this morning before it got taken away. The twins, Jeremiah and us were all on together having some fun.
Then it was time to come in and wash Jeremiah’s hair for the photos. Another huge trigger. Washing hair is such a massive sensory thing for him and is so hard to do. We always have to prepare him in advance. We’d been preparing him since yesterday so he knew it was coming and had to be done.
Finally we had the whole family ready to go get the photos. The twins were screaming and crying because they were over tired, ready for a sleep and a bottle. So they were in the car, w were going to drive for a bit so they’d sleep before the photos. We’d get there early. Everything would be okay.
And then the people arrived to take down the jumping castle.
Jeremiah lost it. He bawled his eyes. Complete meltdown that the castle was going. Hyperventilating bawling. The entire time they were taking it down. He was watching and bawling. My heart felt shattered. I wished so much I could help my boy. Unfortunately though, this is life. Sometimes we have to say goodbye to things and people/animals we love. And this was one of those times he just had to go through. That heartache for him is something I had to sit with him on.
He cried all the way to the photos. Oh my goodness. It couldn’t have been a harder start for him.
We had to push him to just walk in the front door to be safe from the road full of cars driving past.
He has an insanely great memory and remembered from last year that Santa came out. Only this time he was terrified. Last year he loved Santa. We asked him why and he said that Santa keeps watching them at daycare on the Santa cam. We explained to him that’s just pretend but he couldn’t get past it. The entire session was him covering his ears, his eyes and generally not going anywhere near the couch where the photos happen. And also crying. And this is all without any Santa – we had said we can do it all without Santa. Santa wasn’t even present to be honest. It was literally a beautiful couch set up for a family to sit on. If we wanted Santa we could request it or it could just be us as a family which is why I picked this place. That wasn’t enough for Jeremiah though. He was too scared and beyond his limits. Trigger stacked to the max. New place. New surroundings. Memories. Thoughts. He was in a complete brain meltdown. And there was nothing that we could do to help him or reason with him.
The twins then started crying and screaming. It was all too much for everyone. For him. For me. For the twin. And for Scott.
When we got back in the car there was another meltdown because we had said that if he smiled for the photos that we would go to the shop and he could get a toy (this was in the lead up to going for the photos). Well now he wanted the toy. We explained that he didn’t smile for the photos (or cooperate in the slightest really) so that means no toy.
He lost it. And then we are stuck in a place of we need to teach him about consequences. That we don’t get what we want especially if we don’t do what it was that we had agreed to do. But then he did just go through a huge amount of triggers just this morning alone. What do we do? Give in? Stand firm? Reward that he even walked in the place? Parenting a child on the spectrum is so challenging.
We had offered him Maccas before the photos and he had said his tummy was full so we’d get it afterwards. We asked him if he wanted Maccas when we’d finished and he’d calmed enough to talk and he said no. We asked a few times. Explained that we can’t come back and get it. No he didn’t want it. Okay, we are going home. Asked him one last time but he didn’t want Maccas.
We got home and suddenly he wants Maccas. Another complete meltdown.
Emotionally draining. He doesn’t comprehend.
Yes I know kids, all kids, behave like this at times. The difference with children on the spectrum is it’s trigger stacking. All of these little things are little triggers. Stacked up. Into one tall stack of triggers and then it crashes. Comes tumbling down. And we have meltdowns. One that no reasoning or anything will stop. No it’s not naughty behaviour. My son is spiralling. His emotions are too huge to control. And we can’t do anything but allow him to go through this. We can be with him but that’s about it.
Finally he calmed. After a long time. The iPad is one of our lifesavers in times like this. After he calms that helps him to then regulate his emotions. I sat with him. He held my hand. We sat together. And then he looked up at me and saw my silent tears rolling down my cheek.
He reached up and wiped them away. (He has the most gentle, kind and caring soul.) Asked me why I was sad and I explained that I was so excited to get some family photos of us all together. Smiling together. And that it didn’t happen but that it’s okay and I still love him. I’m just feeling sad.
He said, “we can try again, we can go on Saturday and try again.” I explained that we can’t. That we’ve had our one turn today, we can’t afford to pay twice. We had to pull the money together for this try today.
He said we can try again, quite a few times. Until I think he finally understood that we couldn’t. And then said to me “it’s okay Mum, we can try again another time.”
Yes my love, we will try again, next year.
My brain was exhausted. It still is. I took him for a daytime nap which is very hit and miss right now. He asked me why he had to sleep. I explained that his brain is so extremely clever. That is is always thinking. Always remembering things. And that brains that are as clever as his also need time to rest or they can get sick. So he lay down beside me, crawled his fingertips and then hand and arm up into my long sleeve of my jumper as he always does when he needs comfort, and we rested together. We both slept. Much needed sleep. He slept for almost 3 hours when we woke him. His brain was exhausted.
Tonight when I was putting him to sleep, I asked him, “what is my favourite thing in the whole world?” And he replied “being my mum” – yes my love. Never ever forget it. I tell him everyday just how much I love being his mum. And just how much I love him. I’m the luckiest mum in the whole world to be his mum. To be the twin’s mum. But it’s also okay to feel exhausted. To have nothing left in the tank. To have poured out everything we have. And to feel disappointment when that one thing we hoped would work out didn’t. That’s how my son feels when he’s got triggers thrown at him everyday all day. He’s a little hero. He has so many challenges and he keeps trying so hard.
Those precious moments when he is with me, his mum, and we are drifting off to sleep, I treasure. One day he won’t need me. That’s okay. In fact that’s the aim.
Today was tough. Tomorrow will be better. The best is yet to come.