Category: parenting

Sound/auditory processing and ASD Part 3

This is a follow on from Parts 1 and 2, in which I mentioned a conversation Miss G and I had about auditory processing disorder and the different ways in which sound affects us.

Often these conversations arise at the end of the day when Miss G is in bed and I’m tucking her in for the night. Things that have come up for her during the day or week tend to come out, and with Miss G it’s a matter of teasing out the information on what has happened. She lacks theory of mind so often starts an explanation in the middle, or assumes I know things, or refers to things I have no idea about. This involves lots of me checking facts and interpretation and repeating them back to her (scaffolding her story).

Sometimes I say the wrong thing but I don’t know why. Or she tells me things and then I feel helpless because I went through the same thing and I still don’t know the right answer. Something I’ve started doing recently is asking if she wants me to help her with a solution or just listen to her. I seem to put my foot in it less if I ask this rather than assuming she wants my help.

When she does want my help I use my own experiences to try and help her think of solutions to her own auditory issues, and to understand what is an acceptable accommodation and what is not. Asking the teacher to repeat the instructions slowly directly to you is ok. Bugging your neighbour about what to do next because you didn’t hear the instructions is not. Sitting at the front of the class so you can give yourself the best chance to hear is great, sitting at the back because you can’t see the point in trying to hear anyway is not. Talking to the teacher at the end of each day when problems arise (as previously arranged) is an acceptable way of working through interpersonal problems with classmates. Sitting in the sensory room is a great way of calming down and re-framing things, staying there for an hour or more and not participating in classroom activities is a problem.

I must admit sometimes I do find this tiring. Often situations must be teased apart so I can understand what the issue is, then I need to check if she wants me to help her solve it or just listen. Then discuss ideas for solutions with her, and sometimes then follow up by going to the school and supporting her while she discusses with the teacher. I try and encourage her to discuss with the teacher as first port of call, as I want her to be able to advocate for herself, but sometimes this involves another decision as to whether that’s appropriate in that instance.

It can be very hard work, and it’s often constant as we can be discussing some new issue (or continuations of old issues) every night. I don’t know how other people parent, and I know that we are in a different situation to most as there is only one parent and one child, but this sometimes feels like a heavy weight for me. Sometimes I am bad tempered and have no patience and then I feel terrible. I want my child to come to me and discuss these things with me. And I know that we are certainly closer for it. I love Miss G with all my heart but sometimes I wish we had an easier time of it. I’m sure she wishes she had an easier parent sometimes!!

Ka Kite and Arohanui

Some days just suck

Today was not a good day. The prelude to today really started on Friday when I went to pick up my 10 year old (G) from afterschool care. G is prone to accidents as she is hyper-mobile, has low tone and has a problem with proprioception. She had apparently fallen from a tree on to her outstretched wrist, and there was some debate as to whether it was broken. I was supposed to be taking her to her swimming lesson, and after a long week seconded in a different office, I couldn’t handle the change in plans so decided to just take her to swimming and deal with the problem there.

Driving to swimming, about 5 minutes down the road, there was a bang. The lights all flashed up on the dashboard and the power steering went out. I thought I must have run over a piece of plastic or something but checked the rear vision mirror and there was nothing. I managed to steer the car to the side of the road and called the AA roadside service, who ordered a tow truck for me.

Meanwhile G’s wrist looks to be just sprained (again), so that’s something I guess.

Fast forward to this morning, and I wake up with period pain and a sore back and jaw. I’m already not feeling great, then I get a call from my mechanic at 7.30am. He had looked at the car over the weekend for me and it wasn’t great news. Whoever did the cam belt last put a washer back in the wrong place, it had stripped the belt and the belt had snapped, causing massive engine damage. He said the car would need a new motor, water pump, valves, cam belt etc. He said he’d see if he could find a second hand engine and give me a quote.

This put me in a tail spin as I knew it was going to be expensive and I don’t have anything in reserve. Last year was one of those years I’m still recovering from. My other car had needed expensive repairs, then I set up my business and there were quite a few bills for that. Then I had a disaster with one of my contracts and ended up doing about 60 hours of work I didn’t get paid for. I took a massive pay cut when I took the job I started in October – long story, but basically there is potential for growth in the role so I took the cut in the hopes increased role & responsibility would gradually lead to increased salary. Then I had an accident and the costs associated with that, and have been on ACC at 80% of my massively reduced wages. Oh and I spent what savings I had left in topping up the trade in when I brought this current vehicle. So I have no capacity to pay for repairs or buy a new vehicle. And I currently have a leaking caravan as well, which is a whole other story.

I spent the day feeling teary and trying not to cry. My back is still sore and I’m still seconded to another office so I was feeling out of sorts. Then my mechanic rang and said he’d managed to source a second hand engine, though there was only one in the country (mine is a V6 and my car is 16 years old so not as many of them around). However the bad news was that the car was going to cost approximately $4,600 to fix. I had to take lots of deep breaths when he said that. I can’t find that kind of money and my financial situation is such that I already have 2 credit cards (1 is maxed out) and a small personal loan. And nothing to secure any loan against anyway. And I’m still on ACC so have limited earning capacity.

I then spent quite a bit more time at the office trying not to howl with what seems like the unfairness of it all. My brain automatically goes straight for “the universe is against me” and I feel that urge to self harm. When that comes up I try not to push it away. I try to tell myself its understandable I’d feel like hurting myself to get some relief, that the situation looks bad and of course my brain is going to offer it’s old habit to create some solace from that pain. So I can feel the endorphins and not the pain, so I can distract myself from the terrible thoughts going around in my head. Thoughts like “I never make good decisions” and “I deserve this” and “what’s the point, everything turns out shit”.

I am noticing my feelings and how they are effecting me physically, and trying to surf the wave of pain. While simultaneously trying not to cry in an open plan office full of about 20 other people. This is not easy. I felt very alone.

So later I pick G up from afterschool care, and she tells me she has found a bug in her hair. This is not good as she has been complaining of having an itchy head and I have been checking her every second day for nits (head lice). Sure enough, I look and she is crawling with lice. So then I have to come home and strip both beds (she’d been in mine over the weekend), wash all the towels and sheets etc, and then treat us both for head lice. Turns out she’d shared the love with me so I had them too, though mine were only tiny. 3 hours later I’d done 3 loads of washing, two lots of treatment shampoo (me and her), nit combing, blow dried and straightened both our hair. Not a great end to a shit day.

I still want to hurt myself, but tonight reflecting I can recognise the improvement in my self harming urges. Some of them are not as strong, and some are not as ceaseless or long as they once were. I am able to use other things to keep myself from fulfilling the urge. I wouldn’t trust myself to pick up a craft knife tonight (I have them around for sharpening pastel pencils) but I won’t seek one out, and although I am thinking about razor blades I have no motivation to go and find some pliers to pull apart my razor. I am trying to chose to focus on the progress I’ve made, and the difference between where I would be if this happened 2 years ago vs it happening now. It’s not easy and it feels tenuous and fragile in the face of so much turmoil, but it’s so much better than it once was.

When I feel like the urge to self harm is starting to over power me I try to think of my daughter and use the love I feel for her as my anchor. I don’t want to self harm partly because I don’t want my daughter to see that I have cut myself. She is so much more aware now, and she knows that’s where my scars have come from. I want her to feel secure and teach her to deal with her emotions in a much healthier way than I do. Part of teaching her that is to model the behavior for her. I may not be able to muster desire to improve for myself, but I want to try to for her. She is my reason.

Here’s hoping tomorrow is a better day.

Ka Kite