I’ll Never Be Who I Was When You Met Me

This blog began in a blur of emergency, advocacy and exhaustion. I felt the need to document my struggle, both internal and in regard to finding a place for my son in the world and our community.

I appreciated the feedback and the support I received through sharing parts of my story here.

But then I started not having the words to be able to relate my experience.

Even now I fumble as I try to articulate what was going wrong, what was going on.

Part of it was being so tired of telling my story anew. What once was therapeutic was becoming a punishing requirement as I catapulted from appointment to appointment. Each new specialist, medical and educational, needed me to start from the very beginning all over again. Groundhog day with variations and a constant return to the chorus.

But the biggest part of it was that I was changing and the change was painful, unwanted, inescapable. I will never again be the person I was when I began this blog.

I am a mother of a child with autism. So much grieving in that announcement. Such relinquishment of the parenthood I had embraced when I chose to become a mother, such abandonment of identity in that relinquishment. How can I be who am when this wasn’t what I wanted and I can never undo the things that have taken place?

I still don’t know.

Every day it’s hard for me to know where to start because deep down I’m not sure who I am any more. What was once an integrated sense of self is now so fractured that I tire myself out just changing gears.

My son is now certainly on the right track, but I’m completely derailed.

The fact I want to tell you about it?

I’m seeing that as a good sign…

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What Happened Next

In real life we’re now in the second week of the holidays preceding Term 4, while my story here in this blog is still stuck at lunchtime on the first day of Term 3. Let’s try to catch up a little….

2pm. The phone rang. The school counsellor. Wanting to follow up on our meeting with the special needs specialist that morning.

“Let me begin,” I began, “by making it clear that until I stop being angry, and I might be incredibly angry indeed for at least a month, that woman is banned. I don’t want her in a meeting, I don’t want her spending time with my son, I don’t want her anywhere near the school without being warned about it first.”

I think the school counsellor laughed. I think. It was 11 weeks ago now.

Even if she didn’t laugh she did employ the art of significant silence, and well-judged professional understatement. Were her lines intended to be read between? In any case, after a half hour debrief I was confirmed in my view that we’d all been completely horrified at the things that had been suggested to me and my husband about our son.

Shared emotional response to a stressful situation makes for a strong team, in my experience, and while I’d prefer to be sharing emotions other than horror with the teachers and support staff at the school, I’ll take whatever I can get.

I thought the best thing was to not discuss it openly with the teacher, however. School teachers have it drummed into them that they must be supportive of their colleagues when parents are being critical, and I didn’t want to add to the stress load of my son’s teacher, who had gone to such lengths to integrate him into the classroom.

And Week 1 passed with my son having a fabulous week. Week 2 continued in the same vein. Week 3 commenced with the return of the wonderful acting principal who’d been on long-service leave, and I felt calm enough to organise a debrief with him about that meeting. He was shocked, but he’d already heard about the meeting from staff members, and apparently we’d all had the same response (yay!) that the remarks had been – well, something bad, he didn’t elaborate other than to share a facial expression. We made plans for the term. I felt relieved that the whole team was back in action for the rest of the term. We were making brilliant progress!

The next day I finally met with an autism advisor from the agency that administers government support for children with autism, and the grant for occupational therapy, speech therapy and psychological support services finally kicked in. That same morning my son’s occupational therapist was observing him in his classroom and working with the teachers and support staff in strategies that would facilitate his integration and development. Term 3, Week 3, Day 3 and it seemed as if the support team I’d been piecing together really was working as a team.

Friday of Week 3, the acting principal called me into the office.

“I need to tell you something,” he began, and as so often before I felt a knot in my stomach. Despite the steps forward these past few weeks something dreadful had taken place – had it? My son had lashed out at a classmate- had he? What?

None of the above, nor any of the other dark fears lurking in the rivers of adrenalin that seem to have replaced all my other bodily fluids these past few months.

The wonderful acting principal was being relieved of his position, on short notice, and being returned to his classroom (to the excitement of his students and their parents!) and a new principal we knew nothing about had been assigned to the school and would be taking over as of Monday.

I may have burst into tears.

This would be the third principal the school had had in six months, and I just didn’t think I had the energy to deal with someone new. I was explained out. What if this new principal had no experience with autism? What if she turned out to be just like the special needs specialist from two weeks earlier? What if she was so overloaded coming to terms with a whole new school that the pressing needs of my son would be seen as an irritation more than anything else?

I trudged home in a fog of foreboding.

Change is, of course, an opportunity for things to get better, not just to get worse. But it was very hard, that weekend, to pin my hopes on the chance of things getting better…

You Should Be Writing This Down

The third of four school terms began here in my part of the world in the middle of July, and it began with rather more of an event than I’d anticipated. The school counsellor sent me an email the day before suggesting I pop in for a bit of a planning session, but by the time I arrived that next, first-day-of-the-term morning the planning session had morphed into a full-blown meeting, with two department of education representatives present, along with my son’s classroom teacher, the relieving acting principal (don’t ask) and the school counsellor. With my husband along as well it made for seven in the room.

The department’s disability specialist ran the show. Which of course meant the experience was vastly different from the quick chat I was expecting to have with the school counsellor.

What happened next has led more than a dozen people to instruct me “You should be writing this down”. Already I’m wondering what I’ve forgotten, what disappeared in the white rage that engulfed me for more than a fortnight after. But I’m completely clear on the bits that people are talking about when they exclaim “You should be writing this down!”, and it went a bit like this….

The disability specialist said things I now don’t remember, mostly things about autism, with ideas for my son that were like a series of activities for a generic checklist of behaviours associated with the autism spectrum. Only my son doesn’t have that generic list of behaviours – he clearly has issues with anxiety and with sensory processing and with interacting with other children appropriately, but no motor clumsiness or weak muscle tone, no issues with language pragmatics, no trouble identifying emotion in others, and so on. So when the specialist mentioned the Transporters app for helping my son recognise basic emotions I had to restrain an eyeroll, and when she talked about my son ‘barking words off a page’ (that’s what’s she said) and needing help with comprehension I couldn’t be bothered being temperate and interrupted her to say “Oh, his comprehension is just fine – I’m not up on current primary school standards, but I’d be confident saying he’s comprehending at an 8 or 9 year old level”.

So maybe I shouldn’t have been surprised some five minutes later. “We all know your son is very bright, but he’s just going to have to learn to dumb himself down for the rest of us,” the specialist explained. This is the point when I could feel rage tear through every part of me – fury at the notion that a five year old would be expected to moderate his capacities for the convenience of a disability specialist from the department of education who hadn’t even done enough research on his needs to be able to offer appropriate suggestions for his development and support; despair that the public education system was equipped neither for my son’s abilities nor for his disabilities; grief at the dumbing-down I had had to do year after year in my own childhood, the pain of cramping my thoughts into little clumps of stupid for the consumption of authority figures, the exhaustion from trying to second guess which thoughts would be seen as appropriate and which would be seen as insolent, the frustration at being expected to ‘show my working’ when there wasn’t any working required for what was to me so obvious an answer, all manner of these personal griefs; and then straight into rage that a woman with the IQ of 115 was trying to tell my five year old son, struggling with aspects of autism, should in addition now have to struggle to work at dumbing himself down.

This woman continued talking – and who knows what she was saying exactly? An ocean of contempt had already filled the gap between our continents.

to be continued….

Diagnosis Denial

Back in the second week of March I wrote this entry, but never did post it to the blog. I know that part of the reason was that in writing this out I think I finally abandoned the denial I was describing, and I wasn’t sure how to acknowledge that – so the post was never posted. Here it is now, my thinking from just 9 and a half weeks ago:

In this interval between seeking help and being given a diagnosis I find myself struggling with the idea of diagnosis. Co-incidentally, it turns out that quite a few people are struggling with the same idea more broadly, in the form of Edition 5 of the Diagnostic and Statistical Manual of Mental Disorders (which, amongst other changes, is redefining the way that people are diagnosed as being on (or off) the autism spectrum).

Reading the newspaper articles it appears that my son will qualify for the diagnosis of Asperger’s this year, but maybe, probably, who knows?, next year he will not be considered to be on the spectrum.

This is a tad confronting, because it’s hard enough dealing with the denial I’m experiencing in regard to my son being given a diagnosis without considering it may only be a temporary measure.

If I were to write a list entitled Why I Am Thrilled To Get A Diagnosis that list would include points like:

  • I feel optimistic that now we will have access to strategies that will really work and support that will really help.
  • My husband is throwing himself into the parenting challenge of having a special needs child, and I feel as if we are more of a partnership in relation to parenting than we have ever been.
  • I don’t feel quite so determined to blame myself and my various parenting and work/life balance choices for my son’s social dislocation (less parent-guilt is surely a good thing?).
  • I can explain to anyone I want to (and I’m not sure how much I do want to) that my child is not simply “out of control” (although that’s still quite valid, when it’s true) but that he really struggles in certain scenarios more than children inside the bell curve (and off the spectrum) and that we are genuinely working on it and would appreciate their understanding.
  • Plus – I nearly forgot – getting a diagnosis means we can access much greater support for having our son in school, and since we can see how much happier he is in the structured environment of a primary school (as compared to the play-centric curriculum of preschool) we really, really want him to make the transition successfully this year.

But as soon as I look at this list I begin to make a new list called All The Reasons Why My Son Does Not Have Asperger’s:

  • He makes eye contact – when he is interested in your response.
  • He has a sense of humour that relies on absurdity and multiple meanings.
  • His social delays might be explained by his serious jaw injury last year that saw him stop talking for some months. Which, come to think of it, we only had diagnosed as a serious jaw injury because he stopped talking, so maybe this point is too circular to be included…

And that is where my post stopped. My enthusiasm for proving the diagnosis wrong was quite put off by seeing how many positives there would be in receiving a diagnosis. And, to be honest, when I started trying to compile this list of All The Reasons Why My Son Does Not Have Asperger’s I really couldn’t come up with too many bullet points. The experience of hearing the paediatrician announce “Your son has Asperger’s” was something else again, and was still nearly a week away.

The Experts

I’m beginning to sort them out, these experts newly arrived in my life.

First off, I simply don’t have time to acquire the expertise I need right now, so I need the experts; but since I don’t have the sufficient knowledge/experience myself to be an expert I have no objectively valid way of determining the degree to which I should place my faith in the pronouncements of these experts. So I have some trust issues, basically.

Secondly, there are so many of them, these experts. It’s a struggle some mornings to remember the names of the expert(s) I’ll be talking with that day. And it’s been a struggle to figure out exactly how one expert’s expertise differs from or complements the expertise of another. Differentiation issues here.

Finally, figuring out how to share the experts has been an unexpected challenge; I’ve been the one driving all the appointments, having the bulk of the conversations, collating suggestions, implementing (or attempting to implement) recommendations, working with everyone (husband, extended family, school, therapists) to keep up with developments and to all be on the same page with strategies. My son, whose appointments these really are, has ended up becoming familiar with the toy boxes of these experts while I seem to talk without end, going through these initial meetings repeating the same stories and concerns to one specialist and then another, numbing myself with these recitations and boring my child to frustration. “Stop talking, Mummy.” And when my husband comes along to these sessions I find myself dominating the conversations in ways I’d rather I didn’t, but it’s me who is synthesising and synchronising all these threads of therapy and education – I’m the one with closest thing to a global perspective on our son’s issues…. Yes. There are some issues of ownership – how do I balance being responsible with getting out of the way?

I’m finding it easy to trust the experts who understand that my primary experience right now is one of being overwhelmed. Overwhelmed in terms of time, overwhelmed in terms of responsibility and, most importantly, emotionally overwhelmed. Experts who understand where I’m at make me feel as if I can trust their judgment when it comes to my son as well, and while I know these experts have specific roles to play in my son’s development, for now I’m appreciating the role they are playing in helping me transition away from the crisis mode I feel I’ve been in for more than two years now.

This transition from a sense of chaos and crisis to one of understanding and action just couldn’t have been possible without the diagnosis, and I’m also struggling to reconcile myself with the failure of previous experts – GPs who said “he always seems perfectly fine to me” when I asked for advice for referrals to specialists who could help tease out my son’s particular matrix of issues, child psychologists who said “I’m not prepared to give a diagnosis at the moment” and left it at that without any recommendations regarding other experts who could help (diagnosis or no). I feel vastly let down by these gatekeepers.

It took just on a year to work through the maze of expertise to get the help my son needs, and in autism spectrum terms delaying intervention for a year is a disaster. At the same time as I experience relief and excitement at seeing an expert connect with my son and help him find his way through the world I’m experiencing extreme regret that I couldn’t have accessed this assistance from the first moment my son began abandoning spoken language nearly two years ago. Why isn’t screening for autism spectrum issues at the forefront of doctor’s minds? Why didn’t the disappearance of speech trigger stronger responses from these experts?

My next job is going to be helping the experts work as a team, specifically in regard to advising the education experts (aka ‘teachers’) at my son’s school who are new to working with a child on the spectrum. And after that? Blocking in some time with a massage expert sounds like a good plan to me…

What Happened Next…

It has been a month since I wrote the first post in this blog – and in that time I’ve struggled to find a way to connect my thoughts with concrete sentences, so overwhelmed by appointments, anxiety, information and insomnia have I seemed to have been.

But what happened next is a really important part of my story. This is the part of the story where I got to decide – for myself, for my family, and (unavoidably) for my son – just how much of our story we share with others.

By starting this blog I had already decided that sharing is something I need for me. Keeping the blog anonymous suggests I’m not sure that the completely open sharing is what my son needs. And yet my son’s story will be shared widely over the next few months as a large team of experts comes together to work with him as he transitions into mainstream education. I’m already seeing how easy this aspect of managing a diagnosis will be to get wrong.

“Stop talking”, my son often says to me these days. It’s not the talking per se; it’s the content of the talking. It took a few months to realise that it’s when I talk about what’s wrong, about what’s not working, about what’s worrying me in regard to anything (but especially as regards him) that my little boy begs me to just keep my thoughts to myself.

And on entering yet another specialist’s office, I know this is how he feels as I’m asked to start (again) at the very beginning….

Each week I see a very small number of private music students. The three I see on a Monday are teenagers I’ve known since they were each 5 or 6 years old. All three of them are terribly bright, and one has a sibling with special needs. They’ve known my son since before he was even born; I decide to share with them (at their lessons 4 weeks ago) where things are at.

“It looks like he’ll be diagnosed with Apserger’s”, I tell my Year 11 student. She claps her hands and says “oh yay!”, and she beams excitedly at me. In this instant I realise that this particular diagnosis will hold different social nuances for people of different generations. “That’s a really cool thing to have,” she continues to enthuse, “and if the kids at school know that that’s what he has they’ll all treat him really well cos they’ll understand he’s dealing with different problems to ones they deal with.”

She also adds positive comments regarding his sense of humour and his good looks, and I know from reading lots of autism blogs these are the kinds of comments that aren’t helpful to parents of children on the autism spectrum, but I’m too new to the game, so I accept, with enthusiasm, all compliments aimed my son’s way.

A couple of days later I had a rare interstate business trip for meetings with an organisation I have worked with for over a decade. I’m not an employee as such, but I work with this company so frequently that many of the people there feel to me like family. The colleague I have worked with most closely over these years has a child almost exactly the same age as my son, so we’ve shared many an anecdote and parenting challenge over the past five years; I got straight on the phone the day before the trip to her to tell her that it seemed that Asperger’s was what we were looking at with my son.

My colleague’s response was simply a more sophisticated version of my Year 11 student’s “yay!”: “that’s fantastic news, now you can get on with the right treatment, your son will have support at school”, and so forth. I was thrilled – my friend and colleague was absolutely on my wave length – a diagnosis is about finding solutions, not about passing a life sentence. And she also understood that this diagnosis explained a lot of things about how hard I had been finding parenting my one child and how this had been impacting on my work.

By the time I was getting out of the taxi at the front door of the business premises, my colleague had quietly shared the news with those at the company who would benefit from knowing. Arriving for my meetings and being greeted with understanding and compassion was deeply moving, and I headed back to the airport at the end of the afternoon knowing I had the support of the people I work with in prioritising my son’s developmental needs over the coming months/years (while still working on our exciting projects together!).

I have a friend whose teenage son was diagnosed with Asperger’s rather late in his primary school years – we now have something in common that neither of us would have even thought about five years ago. Another friend has a child with Down’s Syndrome, and is working through transition from school to work – again, we now have conversations based on unexpectedly shared experiences. And there’s another friend who …

In short, what happened next was that through sharing my news (both fearful and hopeful) I was met with extraordinary support, understanding and optimism from friends, colleagues and students alike. I don’t know what I was expecting, but I know it wasn’t this. Is it that autism (and Asperger’s, specifically) have been so widely discussed in the community that people really do get it? It is that Asperger’s is seen by many as code for smart and quirky (although with a propensity towards a fixation with trains)?

Whatever it was and is, I appreciated this solid week of encouragement. And I was going to need it, because we were about to hit some serious snags in the socially appropriate behaviour category, enough to make the school principal ask me if I’d considered home schooling…

Shapes and Labels

I’m an educator and musician. I know from my experience that seeing shapes and noticing patterns is how children – and grown-ups – make sense of the world, and an important part of seeing and noticing is knowing the labels that belong to these shapes and patterns: once you know what a pentagon is you start to see them everywhere; knowing they are called pentagons means you can talk about them. Without that label ‘pentagon’ all the pentagons of the world merge with all the other unmentionable polygons of the universe in the arena of what-we-cannot-discuss.

I’m an advocate for students developing vocabularies about what they experience right from the start – no avoiding technical terms, no preservation of a mythical linguistic ‘innocence’. If the child is interested enough to want to talk about something they will learn how to say its name: exhibit A – hippopotamus.

Equally, I’m an advocate for not prescribing or limiting how children can perceive the world: correcting a child’s perceptions prevents the adult from learning about the structures the child has already conceived of – exploring a child’s perceptions is more joyous response and results in more learning, for everyone. Children operate quite logically, and if we can’t see the logic it’s not that it isn’t there, it’s that we haven’t figured it out yet.

And, as of nearly five years ago, I’m also a parent, the mother of a gorgeous little boy who has intrigued and delighted us since his arrival in the first quarter of 2007. He’s starting school this year, ahead of the game in some ways (able to read, to spell, to count beyond 100 and back again) and behind in others (following instructions, doing what the group does, making friends). The discrepancy between the ahead and the behind is certainly sufficient for him to be classified as ‘special needs’ and we know we are on the verge of a capital D diagnosis.

We’re going to learn that our son is Gifted, and we’re going to be told that he is somewhere on the Asperger’s end of the Autism Spectrum. We’ve seen enough specialists (and enough specialists have seen us) to know that this is what is coming.

It will be a relief. And it will be somewhat devastating. It will challenge who we think we are as a family, and it will confront the way my husband and I engage in our parenting. It will make us examine our own childhoods, and it will give us permission (just that little bit) to feel as exhausted by parenting as we really are.

And then there is the terror that the labels my son is given will prevent people from seeing his real dimensions, the fear that maybe labels will prevent him from knowing himself without overwhelming self-consciousness. The usual parenting anxieties as experienced through the lens of designated difference.

This blog is this story. Thank you for having me, and welcome.

 

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