Month: April 2019

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

Sound/auditory processing and ASD Part 2

My own auditory issues are more around not being able to tune out all the background sound and focus on what’s being said. So when we were having that conversation I needed to turn the radio off and look at her. I don’t do eye contact necessarily (it’s distracting) but in some situations I look at the person to help me focus. Our house does not have the radio going in the background unless I am listening to it (breakfast time usually), and we don’t have the TV on during the day. I can’t focus or function with too much noise.

In a noisy environment I may see people’s mouths moving but not hear anything they say, or catch words but not be able to interpret conversation, or not be able to respond because I can’t form thoughts in a coherent way. Sometimes this might look like selective mutism especially in meetings, restaurants or large groups of people but it’s just because I can’t process when there’s more than one conversation at a time and/or there is background noise. Particularly in restaurants and cafes where there is often music and a hum of conversation, plus cutlery/crockery rattling etc This means I may miss some or all of the conversation or I may hear and want to respond but not be able to focus on forming my thoughts and then speaking them.

Miss G knows that when she wants to talk to me that closer is better and there needs to be very little background noise if possible. This doesn’t mean she remembers very often until I remind her though!

The world is not set up for people like us, and even when others know you have labels they do not walk in your shoes so don’t always understand or anticipate the problems you face. You can’t yell “quiet” in a work environment because you have a piece of work you can’t concentrate on with too much noise. You can’t request people have morning tea or lunch in small groups so you can join in the conversation, or even hear it. You can’t tell people to stop opening and closing doors because the noise bothers you. You can’t tell the mowing contractor for the office that he should only work when you don’t have to be there because you can’t stand the sound of the weedeater and leaf blower as they cause you physical pain. But you can understand why you feel upset or angry when these things happen, and bring ear plugs or head phones, or go for a walk when the weedeater comes out.

More on solutions in Part 3.

Ka Kite

Sound/auditory processing and ASD Part 1

Miss G (age 10) and I were having a conversation the other night. She was talking about how she has what she calls “short term memory loss”. She likens herself to Dory (from Finding Nemo) who hears what people say but forgets it seconds later, and she tells people at school that to help them understand her. She was telling me her memory is terrible and she can’t follow instructions, and was giving me examples of this. Teachers and other kids at school are always mentioning that she is not listening and giving her a hard time when she has to repeatedly check instructions. I gently reminded her that she doesn’t have a memory loss problem, that she actually has auditory processing disorder. This is where the signals from her ears to her brain get scrambled and the message takes longer to get processed. She burst into tears.

She was crying because she had told people she has short term memory loss and she really doesn’t and she was worried because she “had lied to them”. We discussed this for a while. Sometimes telling people something that isn’t quite true but that is easier for them to understand is ok. While there’s nothing much wrong with her memory (her short term isn’t as good as her long term but there’s only a little lag) it’s easier for people to understand and relate to this than for her to try and explain auditory processing disorder to people. Explaining that there is nothing wrong with her hearing but the processing gets muddled to the other 10 and 11 year olds in her class could be tricky. I can imagine them interpreting it like she did – either she has a hearing problem (she doesn’t) or an understanding problem (she doesn’t).

My take on this is that it’s ok to say she’s like Dory – Dory is someone most of these kids will have seen in the movies and will have seen she’s still a character with a lot to give who just requires a bit of extra patience. Nemo helps Dory without treating her like she can’t do things and he sees the good in her. Maybe later on she can tell people what auditory processing disorder is, but for now if Dory is who she relates to then that’s ok.

So during our conversation we talked about my auditory difficulties (see Part 2) and hers. Different problems but same end result – we don’t hear what is being said to us. I am trying very much to use the labels we have to explain the issues we face without encouraging a ‘poor me’ attitude. And that’s a very fine line. Some days Miss G is very upset and feels misunderstood, particularly when things happen at school that she has inadvertently caused or contributed to. I remember what that was like at school and these are issues I still encounter now.

Trying to help her understand what is going on, not just with her auditory processing but also her autism and her muscular issues (hyperflexibility/low tone), can be really challenging. Almost every day seems to bring a new challenge, whether sensorially, socially or physically. And many of these challenges force me to examine who I am and how I interpret the world. Often I find myself realising that I haven’t dealt with issues in the most ideal way or gaining a new piece of understanding as to why something happened to me or someone else reacted in a certain way. I often don’t have the answers, I often put my foot in it, but I am trying. I have hope that will be enough as I have nothing else to give.

Ka Kite

My marriage & divorce (or how my quest for understanding began)

The father of my daughter is a man I met when I was 17 and married when I was 22. At 26 I had my daughter, by 27 I was separated, by 29 divorced. I’ve had one 9 month relationship since then, and one undefinable disaster (I’m now 36). It’s safe to say relationships are not my forte.

When I met the father of my daughter (B), I was 17 and just coming out of a long illness. I’d had glandular fever which had turned into Chronic Fatigue Syndrome (CFS/ME) and I had been very sick for nearly a year. That’s another story, but safe to say that I wasn’t in the best place physically or mentally. I felt abandoned by many of my friends, whose lives had continued on without me, and misunderstood and shafted by life. I had taken on an afterschool/holiday job but found that I just couldn’t go to school and work, it was too much for me. My “recovery” from CFS was still tentative and, unbeknownst to me at the time, working in a supermarket was probably the worst place I could have chosen due to my multiple sensory processing difficulties.

I had gotten to know of B who worked in the department next to mine, but never really spoken to him. On the day I handed in my notice he asked me for my number and I think we texted each other (it was February 2000 but I did have a cellphone 🙂 ) and organised a date to the movies.

I don’t remember thinking that much of him. He talked a lot about himself and the music he liked and he played his guitar for me and I remember thinking I was bored. But I went on a second date with him and during that date he said he could see himself marrying me. All my alarm bells went off – this was our second date, I was 17 (he was 23), I didn’t even know whether I liked him. But I was fascinated – what could he see in me that I couldn’t see? Why did he like me when no one else seemed to?

Needless to say I kept going out with him. There’s something intoxicating about someone who repeatedly professes their love for you, especially when you don’t feel even particularly liked by anyone else. I also wanted to lose my virginity and get that hurdle out of the way, and I was kinda interested in the whole experience in being someone’s girlfriend. I have clear memories of thinking that having a relationship was a normal teenage experience and that’s what I wanted for myself.

That’s not to say I didn’t fall in love with him. I became almost obsessively in love with him. I wanted to be with him all the time, and I changed what I liked and who I was to suit who he was. He didn’t ask me to, or demand that of me, and I’m not sure that I was consciously doing it. But after a lifetime of masking I was an expert at remaking myself to fit what I thought other people would like. So I made changes to the style of music I listened to, the clothes I wore and the things I was interested in.

I’m not going to go in to the ups and downs of our relationship and subsequent marriage here now, but suffice to say that there were a lot of them. Neither of us were good at communicating, and there were faults on both sides. I didn’t know myself or understand even my own behavior, never mind his. I felt trapped and essentially I married him despite the warning signs because I felt I had no where else to go, and no one to turn to. And I was terrified of losing him, the only person who stuck around, even if he treated me badly.

When we split up I realized that I didn’t know who I was. I didn’t know what type of music I liked or how I would want to dress. I didn’t like much of our furniture and I hated certain pictures, linens and crockery we had. I guess everyone whose been through a divorce will understand what its like when you suddenly end up with half the stuff you used to have, and almost all of it was a compromise with the other person and not to your taste at all. But I didn’t even know what my taste was. Suddenly I was 27, spat out the other end of a 10 year relationship and I had no idea what I liked or who I was.

And so began my quest to understand myself.

Until next time. Ka Kite.

Gender confusion

As I have mentioned on previous posts, I am currently going through the diagnostic process to confirm my ASD diagnosis. This involves a lot of examining who I am, how I respond to certain things, my thinking patterns, my sensory sensitivities and developmental history among other things. One of the questionnaires I have filled out as part of the diagnostic process is the GQ-ASC which is the girls questionnaire for autism spectrum conditions and has two slightly different variations – one for Girls 5-12 years and one for Girls 13-19 years. I completed both, and my parents completed both, and all four were given back to my psychologist.

The GQ-ASC is a new tool and was only published in February 2018. It’s still in pilot stage, but my psychologist wanted to use it in conjunction with the other screening tools to provide further information for my overall assessment. There’s some info about it and a link to the questionnaires here. It was an interesting exercise for me to fill it out, and it really made me think about what I was like as a child and a teenager. I often think I have very little memory of my childhood but what I’ve recently discovered is that I have little snapshots of memory – sometimes just thoughts or feelings, or a flash of a situation. These are often out of context. I may remember how I felt or what I was worried about but not why, or what else was happening (outside of what was in my head) at the time.

There were questions on whether you preferred to play with girls or boy’s toys as a child, and whether you preferred to play with girls or boys. I didn’t like girls toys or clothes, although I did like soft toys (stuffed animals/plush toys) and I had quite a few of them. I much preferred playing with cars, though outside activities were more my thing as far as I can remember – sport, tag, playground equipment, skateboards/rollerblades, swimming, climbing trees and riding bikes. If I was indoors I was often reading a book. But both my best friends were boys and I wasn’t interested in most of the traditional girls things, like dancing and dolls.

I do distinctly remember thinking about wanting to be a boy though, and questioning whether I would fit in better if I was a boy and whether people would like me better. I preferred boys clothes and many of my clothes, especially from mid childhood to mid/late teens) were actually purchased from a menswear shop. I wore sweat pants, jeans or shorts, a t-shirt and a sweat shirt or hoodie. No makeup, no nail polish, no jewelry, except for a watch. I did get my ears pierced at age 11 but the only time I’ve ever changed my earrings is when one fell out and I was forced to buy new ones (the same as the ones I already had!).

I don’t like makeup, as I can often smell it and the smell drives me crazy and I can feel it sitting on my skin. Lipstick is awful as I feel like I am super tuned in to the feeling of it being on my lips. I have the same problem with nail polish, though in the last year I have discovered that I can stand one layer of polish on my fingers for a few days if I have to (I have a 10 year old daughter who loves to do nails).

From about the age of 8 I thought about being a boy. I remember wishing to be a boy but I wasn’t aware of trans people at that stage so I didn’t think it would ever happen. I read about Joan of Arc and people like her, wearing men’s clothes and doing things like leading men into battle, and I wanted to be like her. At other times though I was quite happy to be a girl. I never really developed boobs so that wasn’t an issue for me, and I was mostly allowed to wear the clothes I wanted to wear and play with who I wanted to and do what I wanted to, so it wasn’t a day to day issue. My main problem was having to wear a skirt as school uniform, though I was lucky enough to be able to wear pants in winter for a lot of my school career. I remember feeling fortunate that I had not been born 50 or more years earlier, when my preferences would have been more of an issue.

When I was 11 and in my first year of intermediate I developed my first crush on a girl. I don’t think I was really aware of lesbians at that stage (this being the early 90’s) and I was really confused because I was still sometimes thinking I wanted to be a boy. I felt sick to my stomach whenever I saw her because I was so confused about how I felt, but I still kept seeking her out. She didn’t know I existed though and I don’t think I ever introduced myself. The following year I had moved on to a boy, not that I ever let him know about that either!

Over the years I have had crushes on both girls and boys, but the girl ones tend to make me feel guilty and sick to my stomach. I don’t know why as I wasn’t exposed to prejudices against gay people as I grew up, and one of the boys I was best friends with as a child is gay. I don’t have a problem with it. I think the sick feeling is confusion and uncertainty about who I am rather than feeling like there is something wrong with me.

One of the only times I have ever been certain about my ‘womaness’ is when I became a mother. The experience of being pregnant taught me that I could feel comfortable in being a woman and still keep the parts of me that dress in shorts and t-shirts, that don’t wear makeup or shop or drink wine or want to wear high heels. It’s like being a mother proved to me that I could do the ultimate ‘womanly’ thing and create life, even though I have failed to conform to all the other sterotypes of what a woman is.

In the last few years I have done a lot of reading about gender and sexuality, and how these things seem to exist on a continuum, and especially sexuality seems to be influenced by hormones released by the mother when she is pregnant. I think I have finally got to a place where I am happy to be the ‘tom-boy’ girl, rather than wanting to be an actual boy/man. And I can accept that what I feel about my gender is separate from whatever my sexuality might be. And that I don’t have to label my sexuality or make a decision about it. Its enough to just accept that I don’t know at this stage and that may or may not change during my lifetime. My aim is just to be open to whatever happens rather than trying to analyse it. There’s an article about this here which explains better than I could why sexual fluidity is different to being bisexual and what it means. Some food for thought.

Ka Kite

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