Restart

After having our daughter reassessed, with a much more vigorous testing, we seem to be no clearer as to the diagnosis (in my mind, not the psychologist’s).

My daughter’s specialist stated she believes she is on the spectrum and also suffers terribly from anxiety and depression. I wanted to understand just how my daughter fits in each required domain of the DSM-5 diagnostic criteria. So we went through it all, but some I felt we’re very vague and not necessarily what was actually happening. For example, deficits in understanding body language or nonverbal communication; I believe my daughter is very adept at picking up very subtle things from others, but because she is withdrawn she doesn’t engage easily in communication with others, which the specialist interprets as due to not understanding nonverbal communication.

I tried discussing this further, but was very aware of it becoming a circular debate and not getting anywhere. That perhaps it’s me; being inflexible in my thoughts and persistent with my view; possibly an aspie trait for me… We ended up leaving it as “she can always be reassessed once her anxiety and depression levels are modified, as they could be the influencing factors”. I nearly laughed out loud, as that’s what the first specialist said after my doubts, and it’s what made me go and search for clearer answers; “she can always be retested if she questions the diagnosis as an adult”.

So, after some serious ruminating, I’ve chosen to accept the diagnosis. Mostly, because we’re back at square one with my daughter’s school refusal. After doing so well for a couple of months, suddenly she just can’t go anymore. Therefore, I can’t deny something like Aspergers is the root cause of all her struggles in attending school. Whilst I can’t find the puzzle pieces for all the diagnostic requirements, there are certainly some there. So instead of constantly questions labels, I’m just going to try to help her with what she’s experiencing right now, knowing some of what is causing it. (But I have to say, it still really irritates me that it’s not perfectly clear!)

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Take 2

I’ve mentioned before how unconvinced we were about our daughter’s diagnosis this time last year. Well, at this moment, I’m sitting waiting to be told, again after a second opinion, regarding where my daughter sits on the spectrum or if she hasn’t actually made the cut.

This time the process has been so much more extensive. Many more assessments and time spent in interviews. I’m hopeful a true understanding and diagnosis can be reached this time…..

It’s time for me to go in, so I’d better go!

Back Under Water

I’ve been quiet here for some months, things have been going really well, so my need to off load my anxieties and ruminations have been at a low. My eldest son has been indulging full steam ahead in his ‘keen interest’ cricket, since its been summer here, (until just over a week ago). My daughter has just been hanging out and being her relaxed happy old self. We’ve had holidays together and no pressure to ‘be’ anywhere or anything.

I thought we were starting to get our act together. I thought this was going to be a new fresh good year. I thought the Lovan my daughter was taking was working it’s magic. I thought that her desire to return to school full time this year was a sign of things to come.

We had managed to get our heads above water, just long enough to take a big gasp of air, before we all got taken back down again, back underwater. I should have seen it coming. But I had been hopeful it would be different this year.

But, on reflection, we were doing well because the kids weren’t under the usual social pressures (ie school). I remember Tony Attwood staying in a presentation, that “the cure for Aspergers is to send the child to their room and ‘boom’ their symptoms have gone”. That’s what happened here. They were away from their triggers of stress and social pressures, so could relax and be their true selves.

Four weeks into term, after doing a brilliant job of attending school, everyday, full time, my daughter suddenly called ‘timeout’ and could go no more.

Last month we got our first of 3 appointments for her autism assessment. The second assessment in 12 months! If you’ve read my earlier posts, you’ll know I wasn’t happy with the very quick and flippant diagnosis we received last year. It was a boarderline diagnosis, so I would think given that, more thorough investigations should have been put into action. But the answer I got from the specialist was “if she doesn’t agree with the diagnosis when she’s a adult, she could always have herself reassessed”.

Not content to have her go through childhood with a potentially incorrect label that could have negative psychological affects upon her; we tracked down whom I believe will be the best judge. This specialist apparently trained and worked with Tony Attwood, the leading expert in Autism, and is whom his practice suggested first on their list of recommendations in our area. Already, after the first 2 sessions, she’s spent more time talking to us and questioning us, testing my daughter using various diagnostic tools (ie ADOS and CARS2) that weren’t touched last time. So I’m hopeful in its thoroughness, the result will be clear. It’s not the diagnosis I’m worried about, it’s a ‘correct’ diagnosis that I want and it will always sit uneasily with me if I’m not sure it’s correct.

I’ll hold my breath for as long as I can as I swirl under the surface of the water, waiting for the current, or a hand, to lift me back up to gasp and breath once more.

Subtle Exclusion

Christmas school holidays have started for my daughter and my youngest son. The weather is heating up as summer’s gears are beginning to turn over.

My daughter has Instagram. It’s been fun for her to keep in contact with friends and others she knows, particularly while her attendance at school has been on a very modified timetable. It helps her to keep some sort of connection with those in her school life.

However, one of social media’s negative side reared its head when yesterday she came across some photos posted by the girls she considers to be her group at school. It was a particularly hot day and there they all were at one of the girl’s houses, swimming in the pool and looking to be having fun. “Why wasn’t I invited? These are all my friends, they are all there, except me, again”, (Last week she saw photos of them at one of the girl’s birthday parties).

My eldest son came home from school yesterday (he’s got a few more days of school left), with green permanent marker in several dashes on his t-shirt and one on the back of his neck. All he will tell me is that some boys did it for fun. I can’t get any more from him. I don’t know if it was just silly mucking around or a testing of boundaries, seeing how far they can go in antagonising him.

Little things, but I feel them gnawing at me, knowing those ‘little things’ are chipping at their confidence. Making them feel less accepted and not part of the ‘group’. Causing hurt.

Career Direction

One of the best pieces of advice I’ve heard about career choice, is to find your passion/keen interest and create a job out of it. I’m still floundering around not knowing what I want to be when I grow up (despite being in my 40s), but have decided to put some direction into my ‘one day, maybe, if I ever start working’ job prospects.

I’ve enrolled into a graduate certificate in autism studies course. I can do it super part time (one unit at a time) and all online. Why? A few reasons, the first being that since my son and later my daughter received a diagnosis of Aspergers, I’ve witnessed the lack of understanding and support required from teachers and school in general. Not just the frustrating experience we’ve had the last two years in i.e., getting a modified timetable for my daughter or the constant repeating to every teacher my son has about what he needs in order to learn best, but what I’ve seen when being a classroom helper for my youngest’s class (who isn’t on the spectrum). I realise teachers have a massive job, with all the learning differences, emotional and psychological problems plus family issues all affecting each child differently!! I couldn’t do it! But, there is such a massive need in the classroom for a better understanding of autism, particularly given that it’s still fairly new on the DSM horizon.

It’s been like hitting my head against a brick wall finding cooperation at school for my daughter. The one saving grace was my friend starting there this year as the school psychologist. I was able to state what we needed from the school and she could generally make it happen. Where as before that, I was almost getting into arguments with the head of senior school who just could not see why things had to be done differently. Coming from a parent, it wasn’t valid, but from the mouth of the psychologist, it was acceptable. (Cue a massive eye roll there!).

Hopefully, with my psychology registration (I’ll have to drag it out of its 12 years in hiding) I feel if I add a specialisation in autism, I might be able to create a job for myself that can try to fill some of the holes the education system here has. I’d like to be able to visit schools and work with teachers on how best to meet the needs of individual students, not just a blanket coverage of a standard child on the spectrum, because as we know, there is no such child.

The other reason I feel drawn to this path is that I find myself energised and excited by it. I’m constantly searching for information, whether it’s research based text books or personal blogs that I’m reading/watching, I feel I can’t get enough and that I’m thirsty for more information, trying to drink in as much as I can. If I am “Aspergerian, then this is one sure sign for it, as this must be my ‘special interest’. Speaking to a friend about it the other day, I said how I was looking forward to my studies, to which she replied “I can tell”. I realised then that I’d hardly contributed to the conversation between the four of us, but once I was on this topic, the words flowed from me! You can probably tell by my very long sentences and gabbling here too, that my brain is running faster than my thumb can on this iPhone keyboard! – The imagery I’m getting right now of what it’s like to have something you want to talk about but know you’ve hit your quota of topic time, is that of being on a horse who is prancing and ready to go and you want to bolt too, but not being allowed to, instead having to pull the reins in and hop off.

So (I’m trying to pull the reins in now), I’m hoping next year brings direction for me, a continued quenching of my search for knowledge on this topic and that I don’t bore those around me too much as I collect more knowledge on the subject! Hopefully, then I can create a job description of my own where I can run with the topic that excites me (allowed to gallop on the horse) and work towards improving the school environment for children on the spectrum.

*****

Who has directed their careers to somehow include their keen interest? I’d love to know what and how you’ve achieved this!

Emotional Mirroring

I’ve just observed over the last year or so, how obviously my sense of happiness and wellbeing is purely based on how happy or healthy my children are.

Apart from the usual ruminating at night, fighting the negative thoughts of the day just been, plus the many years before, I found myself of late spiralling into what I assume was depression. I don’t think I recognised it until I suddenly had no energy, physically as well as emotionally. Just that flatness. Little things made me teary or down right miserable. Such as seeing a toddler’s innocent enthusiasm, it would just set me up and I’d start crying. I think it connected me to my own children’s sweetness at that age and made me feel remorse for mistakes or grief for things that have transpired.

Physically moving was starting to be an effort, I’d get out of bed because I had to, but would then stand in the shower and cry. Just feeling so depleted and lost and a failure. Mostly as a parent. The exhaustion my daughter’s struggles have brought me were starting to wear me down. Just being so worried for her and at a loss as to how to make things better for her made me feel emotionally unstable, like jelly.

But this has also fuelled my own self doubts in other areas as well. Recently, I bawled and bawled in my car. Cried like I’ve not cried for many years, decades even. Why? A cathartic realisation that I feel I’ve not achieved anything career wise and can’t imagine I ever will. I feel like a child and feel like I’ll never have a career. I had visited an old uni friend of mine that day who had just started working as the psychologist at my daughter’s school. She and I did the same under-grad and post-grad training. She greeted me in the foyer and led me to her office. We chatted for over an hour, trying to catch up on the last 15 years since we saw each other. I was in awe of her, having a real job, an office, all grown up!

In my car afterwards, I felt the desire to contact another uni friend I hadn’t spoken to in ages. Just to drive that nail of inferiority further in. I’ve always referred to her as my ‘daggy friend‘ because I was never afraid to be the real me with her. A ‘dag‘ (an Australian term for being rather uncool). She’d done it tough at uni but got herself through despite what was thrown at her. She also did the same level of training as I. Until recently, she took herself back and did her masters.

When she answered the phone, she was talking softly. “I’ve rung at a bad time” I suggested. “No, it’s ok, I’m just in the middle of teaching a class”. After a rapid comparison of personal disasters, we said goodbye.

I’ve not admitted it quite so keenly to myself before. But I felt empty, pathetic, incapable of being anything, still stuck in first gear, not going anywhere. My friends I’d studied with and travelled along on quite even keels with, were now living the careers we imagined we’d have one day. So I cried really loudly, as I let my disappointment in myself roll out.

However, just these last 2 weeks, my daughter has been able to fight through her anxiety with the help of her Lovan, and get to school (part time) unfailingly. She seems to be coping so much better now. Consequently, when I met with my mother two days ago, she made comment that I looked well, that for the first time in about two years I seemed to have a lightness. Like I was no longer carrying such a heavy load.

I hadn’t realised the toll it was taking. But it appears so obviously how as a parent, my emotional well-being depends almost entirely on the happiness and wellbeing of my children. Whilst things are starting to run more smoothly for the time being, so is my wellbeing. As a parent, I am an emotional reflective pool of my children.

Drummer Boy

Since my son was tiny, he was drawn to music in some way. Trying to do all the right things with my first baby, I would play classical music whenever we were in the car, because apparently that was supposed to help connect new neural pathways in the brain and increase intelligence. But when he was about 15 months old I rebelled and bought a Wiggles CD (Cold Spaghetti Western). As soon as I put it on, he lit up and was delighted in it; bouncing and kicking his legs to the beat. Poor child, I must have been boring him senseless with all that classical music.

The Wiggles soon became his everything, with toys and clothes, dvds and cds (though, that sounds like they were my thing!!). I even took him to their concert when he was two, where he stood and cried when it ended and they said goodbye. In particular, he was interested in watching the musical instruments being played in the band. Whilst watching the trumpet player on DVD intensely, he suddenly rushed off to find the elephant shaped watering can we had and proceeded to play it like a trumpet.

His keen interested in drums soon emerged after visiting his uncle who is a drummer. My son would rush off to ‘play’ his drums and be entertained for ages on them, not wanting to do anything else. So, at age 7 we started him with drum lessons at school. Despite advice around us to give him piano lessons first to make sure he develops a sound theory understanding first. However, I knew if he was going to persist with any musical training I had to hook into his keen interest and not potentially destroy that passion with dry old theory on an instrument that didn’t interest him.

He picked it up quickly and seems to have a natural ability. Eight years later and he’s still playing them. We tried to add to his musical repertoire, plus help with the theory side of things by enrolling him into piano lessons. He had been teaching himself quite complex pieces on piano, but the lessons of course were theory based, so he was having to play single finger tunes like Twinkle Twinkle Little Star, which was utterly boring to him at age 12.

As a kid I learnt piano, so have the basics. He would ask me to play the piece he was learning. He would watch, ask me to play it again, maybe more slowly or in small sections. Then he’d sit down and start to play. Basically, he was dodging having to learn to read the music. His brain worked much better in observing than playing. For his school music concert, he said he had to occasionally look up at his sheet music to appear to be reading it, when in fact he couldn’t, it was all just memorised.

Over the last two years, however, we have had to insist he continues with his drumming lessons; to persist just a little longer. Not sure why, perhaps it was the music performance class at school that he didn’t like. But what ever it was, he wouldn’t practice nor was he enthused about performing etc, yet somehow he knew what he had to do on stage and would get in right.

This term’s music class seems to have turned things around. He went into it basically kicking and screaming, stating he hated me for forcing him to do it. I just kept telling him, “just ’til the end of the year, then if it really isn’t for you, then you can move on from it”. A month in and he is drumming like mad again. I’m contemplating sending apology letters to our neighbours (even though the closest ones are about 200 meters away). He will play for 5 hours straight with maybe two food breaks in between! He now has blisters on a regular basis on his fingers from playing so much and we’ve needed to replace his drumsticks that couldn’t cope and splintered into frayed stumps.

Seeing such intensity in his interests that gears him up to get involved, practice, learn etc and in return do well amazes me. He still can’t read music, doesn’t understand the rules of bars etc, but can play beat perfect. At the last performance his class had to do, one of the band’s drummer was away. So he was asked to play for them. He’d never played the song before, so he had them play it for him, he practiced twice with them, then got up and performed on stage with them!!

I think it’s an aspie thing, not just the intense interest and focus, but the flat out refusal to be involved or try to learn if there’s any inkling of a doubt or lack of interest. It can be so damn frustrating. His lack of interest in learning the theory is starting to make it difficult for his music, mostly that the other class or band members laugh at him when he questions what something is. But he’s still able to get away with his style of learning; listening and watching.

I am in awe of my son’s talents and am so pleased he is again enjoying them.