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Fumbling in the Dark

Author
Devorah Tockar
Social Worker and Mum of 5
July 29, 2025

"It is so dark in here. Please can someone turn on a light"?

In the beginning, we were unsure of what was going on. We are the same parents, parenting our child in the same way that we have parented our other children, but for some reason (and we aren’t sure what that is) our child is not in an optimal place. They are either sad most of the time, maybe they are having angry outbursts often- that end up with people getting hurt or items being damaged, maybe they are refusing to go to school, or refusing other activities. Maybe they are consistently having trouble sleeping, or socially. Maybe the school has called you in a few times to have a chat.

Chances are that the behaviours of this child are impacting the rest of the family in a big way. It could be that other family members begin stepping on eggshells when around this child, or subconsciously stepping out of the way and making their needs seem smaller so they don’t rock the boat even more than it's already being rocked. It could be that stress levels in your home are at an all-time high and it is impacting your relationship with your significant other as well.

We know the ups and downs that come with everyday parenting- this just seems a bit bigger. This one seems like we are not managing on our own, even with all the resources that we have at our disposal.

So, what next?

Here are some of my personal experiences-

Okay here we go again, Sam is about to come home. Snacks on the table. Check. Cold water in a cup. Check. Phone nowhere to be seen. Check. Baby not in my arms. Check. Deep breath- you can do this.
Door opens- hi Sam nice to see you. Sam slams his bag on the floor, narrowly missing his baby’s toes, grabs some food and leaves the rubbish on the floor, stomps to the ipad to start playing a game. OR  runs to the rocking chair (to regulate after a hugely exhausting and frustrating day). But in our home, we don’t do things in that order; in our home, homework comes first and screentime is limited. Sigh. At least no one actually got hurt this time.

Another time, Sam came home and his English tutor was set to arrive in 15 minutes. He sat on the rocking chair and refused to budge. He flat out refused to have the lesson (I had previously cancelled one as it seemed he needed the break). When he understood that this time, I would not be cancelling the lesson he began to scream. Screams that I had never heard before coming out of a child. Screams that reminded me of the pangs of labour screams. Deep, guttural, painful screams. It was very difficult to witness. I switched off the lights and I sat close to him whilst he continued to scream and cry and then sob. His tutor arrived and I spoke with her in the other room. I explained the situation and I asked what she was comfortable doing. She said that she would be happy to play some games with him (all pressure off to do work). He eventually joined the lesson and stayed for the duration of it. It was important for me that his anxious feelings that led him to try and avoid the lesson completely were not in control/ in the driver’s seat. I wanted him to see that he could do it even when he wasn’t feeling in an optimal state.
When I would describe my son to professionals I would tell them a story from when he was 5 years old. There was a parent evening at the school and we each had to pick out a picture that somehow connected to our child. I picked out a picture that was half in black and white and the other half was filled with vibrant colours. I said, “the world may see the black and white in a situation, but my son sees the beauty in all of its colours”. Three years later I was sitting in professional’s offices saying that my son’s light has dimmed so much, I fear for it extinguishing completely, or dimming to a point of no return.

Wherever he turned; at school during class, with his friends, with his siblings, extended family and even with his parents- everything was too hard and so it seemed as though he had given up on himself. Even a task that seemed simple like putting dirty clothes in the laundry basket, or even drawing on a piece of paper freely, he avoided doing at all costs, and the pressure would push him over the edge. 
And as you can probably imagine, it’s also a difficult space for us to be in. It impacted on his siblings who felt that it was unfair that he wasn’t ‘pulling his weight’ and every interaction was proving difficult for us as his parents too. We were deep in it, and unable to step back and see the bigger picture. We were in a reactionary mode, and also in a heightened state of alert and that wasn’t helping anyone. 

"Growth happens within loving relationships and his relationships were hanging on a thin thread"

 Okay, so you may or may not know that I talk to myself- a lot. Well, we all do, but I do it out loud. Here is an example. You can read it with your eyes or say it out loud- take it or leave it.

Repeat after me, as many times as you need-

“I am having a hard time because this IS HARD. My job is not to take away my child’s pain, but rather to walk alongside them on this journey. This is his journey, and I am here for the ride. I am not to blame, and I cannot fix this. I can and will do everything to support him through this but that does not mean I need to have all the answers, and the fact that I don’t right now is OKAY. I can do hard things. I have done it before, and I will do it again.”

 

This article is part 2 of an 8 part series- Parenting through a Neurodiverse Diagnosis.

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