IEP – Follow Up

Emily Shanks Newcomer at School

So the IEP the other day went super well. I was vaguely anxious beforehand and wondering if I had prepared enough, but on the whole I didn’t think I could do much more – the rest would be down to how the school would choose to work with it and us. Having said that, I was fairly confident, since last year’s meeting was very productive, and conducted with a brilliant attitude and heaps of understanding on their part.

New teacher and Senco this year, but once again, I felt very much in caring and competent hands. And they start their meetings with prayer – this is a school which does what it says on the side of the box when it comes to pastoral care and the spirit of Jesus’ teachings, and starting with prayer is committing the outcome to upholding those standards, and I really appreciate that.

And the Prof’s teacher actually had a great report on him – far better than I’d anticipated. According to her, over the course of the first term, he has become more relaxed and happy, he smiles more, and is coping relatively well with interactions with other students. (He even has some girls who consider him their ‘friend’ – oh, that is so awkward, cringe! I don’t think he reciprocates. He’s so anti-social even imaginary friends would be unwelcome.) His organisation and time management are also good (which is not much short of miraculous for a kid I had to dress for school until he was at least 6, just to get to there on time! Although it does concern me that his driver is anxiety.) His pace is another issue altogether. That is a big concern, but at least there are strategies in place around that to work with.

All in all, it was great to just sit down and communicate with the teacher. What I find most difficult generally is that although home and teacher are supposed to work together, I’m not there, so I don’t have a clear picture of what structures and expectations are in class, and of course they only have a superficial picture of him. But having the opportunity to turn all those issues over between us was such a relief.

 

 

IEP Day

Emily Shanks Newcomer at School

Biggish day today. We have this year’s IEP meeting this afternoon. I’m relatively unprepared, because that’s just how I roll in life. Although when I say unprepared, I have my background of courses, reading, and personal knowledge and experience. What I don’t have are recent OT reports or professional recommendations. Still and all, when I’ve presented them before, they haven’t been of essential value.

So off I will go into the fray once more. And what an ongoing fray it is. It feels like Groundhog Day sometimes, but in what specific ways I don’t even have the energy to describe. I have a very bad case of the brain fade, and it’s not going away any time soon I fear. I feel like a shadow of my true self, and that will have to suffice to excuse my vagueness.

We’ve decided, though to go the route of describing his gifts and difficulties specifically rather than even attempting to go into labels like “Aspergers”. They know he has Aspergers, whatever picture that conjures to them. So yes, he has social difficulties. His own personal way of dealing with not understanding social interactions is to remain permanently in defense mode; disengagement and avoidance are his tools, and anyone attempting an approach is swiftly shot down. He has no friends. None. No – wait – he has one, and sadly she moved down country.

But he has other difficulties as well. Even though he is gifted, he is dyslexic, has ADD, probably dyspraxia, and dysgraphia, which is a specific handwriting disability, and anxiety due to all of the above. His fine and gross motor co-ordination difficulties lead to physical handicap in written (and typed) work, but furthermore, processing ideas through his hand, as it were, to the page, is like a barrier, tripping up the flow of thought. Asked questions orally, he will give detailed (usually far more detail than required, which is a different kind of problem) answers, but having to write the same answers will always lead to only a fraction of the thought being committed to paper.

Allowances have been put in place for this; he is able to use voice recording apps on his iPad to do whatever schoolwork is suitable, and if we could find effective voice to text software or apps, he would be able to use that also.

Ironically, his current ambition is to be a writer. This is because, contrary to the common belief that aspies lack imagination, stories pour out of him, faster than he can get them down in fact. Anyway, in a few years, technology will probably have progressed enough that he could write his stories without having to write, or type.

But for now we have to survive school. He goes to an exceptionally accommodating and forward-thinking school. But as I’ve touched on before, even there, it’s not straightforward. For example, the last meeting I had with the Senco, a few strategies were promised, of which none that I am aware of have been actioned, although I could be wrong about some of them. I have had success in negotiating directly with teachers, but then substitutes are always a problem.

It’s not that I want life to bend to accommodate my children. I fully accept that life bends for no man, woman or child. I will, however, fight injustice and for the equal rights to education we’ve all been promised, and that without forgetting that my children are not in fact the only children in their teachers’ classes. What we want is for our children to be given the opportunities to adapt functionally in the system they have, perforce, to operate within. As far as I’m concerned, school is not a natural environment. It mimics real life in some ways; specifically, inflexibility. But it doesn’t otherwise resemble the real world. So my aim is for the children to survive the brutalities of school in one piece, and then find a niche in adulthood where they can find relative comfort and peace. I personally believe this is achievable – if they can avoid picking up mental health problems during the rough early years, and can learn life strategies for survival, they can find a career which suits their personality and talents, and hopefully gather people around them with whom they resonate. At least, that would be a successful outcome.

 

 

Beating Anxiety

Girl suffering form anxiety
I mentioned a while back that though I have been anxiety’s bitch for many years, I’m in remission. Anxiety is common in those who don’t fit neatly on the bell curve, whether because simply being different creates anxiety, or because people who are different are very often also sensitive sorts by nature.

It’s been a long journey to recovery – anxiety took me in its teeth very early on, and though I’ve never let it make decisions for me, it has inevitably shaped a lot of my life. I’d spoken to psychologists and counselors and been to cognitive behavioural therapy (CBT), but the turning point was meeting someone who made sense of the physiological processes of anxiety in the body; the autonomic nervous system and the hormones that regulate it.

Everyone knows about adrenaline, the fight or flight hormone, but noradrenaline is the second part of the picture. Whereas an adrenaline rush lasts about 20 minutes, noradrenaline can be produced in the system pretty much indefinitely. Adrenaline functions to give your body the boost to fight a danger or flee it, while noradrenaline follows up to keep the body alert for further danger.

However, the symptoms of these hormones in the system – sweating, palpitations, increased heart and breathing rate, pins and needles, paranoia, sleeplessness, etc – when there is no discernible physical cause, can be distressing by themselves. People naturally search for a reason for their symptoms, and as the symptoms mimic life-threatening physical conditions, the experience can be terrifying. It becomes a circular, self-feeding situation, where noradrenaline makes a person hypervigilant to the very symptoms the hormone itself is causing, which are appraised as a present danger, and in turn causes noradrenaline to be released in response to the perceived threat.

Emmanuel Benner - Prehistoric Man Hunting Bears

But noradrenaline and adrenaline have well-regulated functions, and will not kill us – their function is to keep us alive. In primal times, after a fight for water or food, noradrenaline released in large amounts (noradrenaline in smaller quantities is used by the body for normal autonomic function) would be the hormone to keep tribal members awake and vigilant, peripheral vision and hearing hyper alert for surprise attacks, the body’s way of ensuring survival during the exhaustion following a fight, when the adrenaline had worn off. This is their function, and it’s a successful strategy, evidenced by how successful our species is.

The way to crack the cycle is to observe it scientifically. Know what adrenaline and noradrenaline are, and their functions – adrenaline causes pins and needles, tingling, etc, in simple terms by causing the body to become over-oxygenated. This can occur from hyperventilation, but not necessarily. In preparation for danger, the arteries open and allow increased blood flow, the heart rate increases, blood flow to the digestive system decreases, and the bowels may be evacuated. Noradrenaline keeps the body alert through high arousal of the senses, attention to the peripheral vision and hyper vigilance towards any sign of potential danger, including attention to physical symptoms.

Then, with this knowledge, step into the third person and observe and identify their effects on your body when you experience them, knowing that while unpleasant, the symptoms will not harm you. Noradrenaline is released when the body is unsure whether danger might still be lurking, so merely understanding the physical process your body is experiencing will give the answer that no clear and present danger exists.

But the brain is designed to run as automatically as possible, so that conscious thought can be directed to the most relevant issues. This means that initially your thoughts will tend to the same fearful patterns, but these pathways can be rewritten by conscious effort and practice. For myself, even knowing the science, it took a while for the knowledge to filter through and become my own. One way I made it my own was by observing my inner dialogue; how I saw my symptoms, and by extension, my body, as hostile to “me” (very dualistic). In simple but effective fashion, I deliberately changed the conversation to one of encouragement, acceptance, self-love and gratitude. Because the intention is to reach the subconscious and make new living arrangements with it, so to speak, it doesn’t matter what words are used or how silly they sound, as long as they resonate with your conscious mind.

Distressingly, I noticed that after many years in vexatious living circumstances, the physical symptoms of anxiety increased after I found my bliss. I was frankly disappointed. Why would I feel worse when my situation was so much better?

Then I realised that even though my former circumstances had not been the genesis of my relationship with anxiety, while I was in them, my stress had had a physical situation to refer to, but when I was out of it and happy I still had old physiological habits which hadn’t been kicked, thus I had free-floating anxiety that didn’t have anything to refer to, and this latched on to anything going, whether it be driving my kids to school or watching a movie.

I think this was another part of what my mentor had been trying to explain. Certain events, experiences, neurotypes, will bring about particular responses in the brain and body. Understanding that our reactions and responses are logical results to experiences and events is the beginning of healing and self-acceptance.

More info:

What’s the difference between adrenaline and noradrenaline?

New research suggests that stress may only be bad for you if you believe that to be the case…. Kelly McGonigal talks about it at TED.

For anxious kids – From Worrier to Warrior: A Guide to Conquering Your Fears by Daniel B. Peters, Ph.D. “From Worrier to Warrior will teach you how to create your very own “toolbox” of ways to combat fear and anxiety to carry with you and conquer the Worry Monster at any time.”

 

We are NOT helicopter parents

treading very lightly

treading very lightly

 We are NOT helicopter parents: An article in the HuffPost by WP blogger Cate at The Clear Parent which I think sooo many of us could relate to.

This is exactly what I want to say to teachers, even when they’re not arguing or condescending, just being very polite while I try to walk the line between looking after my child’s needs and getting all up in their faces.

And I really do try. But there’s that first day at a new school where you know your child’s anxiety is through the roof, but no one else can see it, because they sit where they’re supposed to, and do what they’re told without a fuss, and keep still and quiet, and don’t cry, but you can see it because it’s in their eyes like shards of glass, so you stand outside the class where they can see you and tell them you’ll be on campus for a while, because you know that once they get over the initial shock, they’ll be fine, and no one will ever know there was a trainwreck on the cards, because you prevented it by reading your child’s eyes when no one else could.

 

 

A Very Aargh Day

 

climbing the wall

I drafted this post a couple of weeks back, on a bad day, and didn’t post it because….well, it was a bit ranty. But I’m posting it now because it’s background to where we are …today!

“An Aargh day today. My 12 year old son has Aspergers, ADD, plus informally diagnosed learning difficulties; dysgraphia (handwriting difficulty) being the most prominent. Today I got a letter from the school letting me know that if his writing doesn’t improve, he will not reach National Standards this year.

Aargh. Not because he is failing National Standards, but because JUST THE OTHER DAY I spoke to the Senco at his school, and his class teacher, mentioning his handwriting was a real disability and that they would never gauge his true abilities in anything which had to be handwritten, with not much more response than “yes that’s a shame isn’t it”. Ye gods, was I not clear enough? It’s not like I can ask the kid to just work harder and he’ll improve. Takes me right back to his first year at school when his lovely, well-meaning, but ignorant teacher asked me to request him to “try to focus” – like an effort from him would magically change the way his brain was wired.

Don’t get me wrong, I love this school, they’ve been amazing at looking after my kids. But even there it feels like there’s a lack of understanding – and if even there there is a lack of understanding, where else can we go and what more can we do.

So today, I am really tired of trying to explain, and trying to make the way clear to improving his future prospects. The child has incredible potential as a thinker – you know that just talking to him. But he will never be the kid who eases his way through school achieving a full deck of A’s. It will always be a battle, to an uncertain end. Just like any mother, I want my child to achieve his potential, but when one of the possible alternate outcomes is mental health collapse, there’s a good wack of concern also. And I’m just tired today, and I don’t have any answers.”

After that post, I did get some more constructive feedback from the school, and felt like we were getting some go-forward in some ways, and there was respite in a two week Easter holiday break.

But today, we are drawing to the close of the Easter holidays, and school is looming large on the horizon. The Prof is moody as all get-out, and ranting about how life is barely worth living because School, and he can’t keep up with the workload, because he is Useless.

I read a post by another WP blogger the other day, who through tragic circumstances discovered the incredible sensitivity of the bright mind. She posted a link to a book about this subject. Actually, I was already very well acquainted with how vulnerable bright minds are. To drive home the point, we also recently lost a cousin to suicide for I believe precisely these reasons. My first thought was, I have to get hold of this book! But then I thought, we already plan around this in the kids’ lives, in fact, having suffered myself for so many years, it is the exact thing I fear for my kids and work so hard to prevent. What makes me feel quite distressed is that I had hoped (assumed? planned?) that if I was aware of these pitfalls as my parents weren’t, as my aunt and uncle couldn’t know, then my kids would be ahead of the game, that we could avoid trainwrecks.

But it’s like we live on a knife edge. Yes, we might succeed in pulling through unscathed, but it takes such concentration to stay on that narrow track, and I cannot control for all eventualities and complexities. They’ve already had to live through a divorce. And even if I could keep them in a bubble, at some point they will be exposed to the Real World, and the extent to which they cope with that is presumably in large part the extent to which I have prepared them for the challenge.

The Real World don’t bend for no one. So if you have challenges, disavantages, disabilites, you just have to work that much harder to get by. But that’s Out There. Before they’re let loose, you do get some 18 years to train them up. What scares the crap out of me is making the most of the time that’s left.

And so when I want to ask the school work with him and strategise for his differences, it’s not because I’m an academic version of a soccer mom, it’s because I know that if his mind is not looked after, it won’t just stagnate, it will implode.