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Sunday, October 12, 2014

Laser Beak Man

I've mentioned Laser Beak Man on this blog before. I know online etiquette says you should link to previous said blog pots, but stuff it, if you didn't see it the first time then you were probably doing something more interesting than read this blog. Good for you. Anyway,  I really do love LBM, and more so Tim Sharp, his creator, and even more so again, his mum, Judy. Today Harri and I met them after having occasional contact via Facebook over the years. Here's superstar Tim,

And here we all are, the artwork behind us is Tim's "Always Look On The Bright Side',

And here's Laser Beak Man,

Lastly, Harri and Tim. This picture means so much to me,

Tim and Judy's story offered a real boost back when Harri's diagnosis was new, and also since that time when we've hit some tough patches. Judy has been incredibly generous with offers of support over the years, so to finally meet and have a real life hug and chin-wag was quite awesome.

If you don't know who Tim and Judy are you can start by watching this,

Friday, August 29, 2014

School Part 2.

I wrote some time back about the challenges Harri is facing at school. It's a common enough lament among parents of spectrumites, school is a special kind of hell, the sensory challenges, the social difficulties, the processing problems. As Harri's paediatrician says "it is a torture chamber for kids like him".  So the best a parent can do if they feel the school is able to offer a decent level of support is to advocate consistently on behalf of your child, to educate and get the best shot at consistency from those who interact with them daily. Hoping to hell all those people have your child's best interests at heart, or at least are well intentioned, open minded and prepared to learn what your child's best interests actually are. Holding in mind it may look very different to what they initially perceive that to be.

Eventually though it's highly likely you are going to encounter someone whose opinions clash with your own in regards to what level of accommodation your child needs. They may balk at differential interventions and other processes that scaffold your child's learning, making accusations of molly coddling a child who is capable of more. They may think the sensory breaks your child is given are pandering to his manipulative and defiant behaviours in class. That his oppositional acts are the direct result of the accommodations being made and therefore he needs clear and consistent consequences, such as punishment to force compliance. And thus it is now for him.

After a tough year Harri's teacher, aide and I developed a clear strategy for dealing with his more challenging and intractable behaviours, and spent considerable time passing on those skills to others who also came into the class with good results. But a senior staff member didn't understand the complex challenges we'd navigated, and the effective outcomes we'd achieved. They made decisions, poor decisions, that pulled the rug out from under all of us, primarily Harri. And we've been dealing with the consequences ever since.

The only response I was left with was to withdraw Harri from school on the days he was at risk from a staff member who clearly believed she had the answers to 'sort him out'.  And so for now he is attending school part time because those who know him least have the power to do the most damage. Parental advocacy can only take your child so far, the rest is up to the good will or otherwise of others. Sadly for so many of our kids ignorance is the antithesis to good outcomes and ignorance abounds still within the education sector.

Sunday, June 29, 2014

Must Share.

I don't know why Kyra wasn't on my blog list, I've now rectified this. Here is a wonderful post from her I had to share as I know there's a ton of mums out there who will connect.

Tuesday, June 17, 2014

Photo Therapy.

I've taken up a hobby to provide a much needed distraction from the daily chaos of Che Shaz. Photography is where it's at for me at the moment. It includes so many facets that provide enjoyment and distraction. The exploration of places to seek out good pic options, the ability to replicate an image in mind, to reflect beauty, or a narrative within a picture. Perhaps a few words to reflect the intention but often the visual alone is enough.

Sooo I created a new blog.

Tuesday, June 10, 2014


School is a long time. Thirteen years of hard slog for those of us who didn't or don't enjoy it. My eldest (NT) daughter seemed to breeze through her school years and has since moved on to university. My next daughter so far (she's five years in) seems to be doing OK too despite a few challenges and bumps along the way. She's keeping up academically with peers and with support managing the trickier aspects of organising herself in the class, participating in group activities like sport, managing anxiety, and has some friends. All in all I'm both happy and proud of how she's coping.

Then there's Harri. The wild child. Not one to be controlled, compelled, bribed or berated to any great effect. School offers both too much and not enough stimulation for him. And yes there is such a thing. Simultaneous over and under stimulation has been his struggle since birth, I made reference to this back when I first started blogging.  Because of this neurological complexity mainstream school is not well suited to his learning style. He is an experiential learner. He needs to understand the value and purpose in learning something in order to pay it any attention. If he can't ascertain a purposeful need for knowing something then he will fight having to learn it. He's the kind of kid who can happily be taught measurement if you are planning a garden bed or mending a broken swing. He could see the reason in that context and be motivated by the outcome, given he enjoys gardening and swings. But show him a ruler at a desk and try to teach him measurement that lacks a practical context and his eyes glaze over.

Adding another level of challenge is the sensory overload. The lights, sights, and noise of the school environment. It's almost impossible for him to focus in that situation without a high level of motivation. And unlike lots of others on the spectrum, he isn't a fan of repetition figuring if he's done something once, like write out the alphabet, why would he bother to do it again?

His school, teacher and aide have all been brilliant. This is a kid at the Aspergers end of the spectrum who has a full time teachers aide, which is unheard of in terms of funded support.  She's a wonderful advocate for him, reads him beautifully, and knows when he needs to be given time out from a situation for a sensory break, although it can be very hard to gauge with Harri as he doesn't display obvious signs of distress such as covering ears. It's seems to me the staff in his class very much care about him and want him to do well given we know he's capable of doing much more than he currently is. So what's the problem?

Internal motivation? Developmental immaturity? Executive function issues? Impulse control? ADHD? Stubborness? Boredom? Probably all of the above. I can't be certain what the underlying factors are that create his resistance but as the year goes on his in-class behaviours become more defiant and resistant.  He's got positive behaviour supports, skilled staff, a compassionate and supportive environment and a sharp mind, yet all those supports aren't enough to overcome whatever is going on for him.  I wish he could articulate what it is that's happening so we could help more but for now it's all trial and error and worry.

Worry if things will improve. Worry that as he ages and demands increase so will his resistance. Worry at what happens when he doesn't have teachers or aides that are so understanding. Worry about how I'll get him to school each day if he becomes so stressed he no longer wants to attend. Worry he'll start to slip behind his peers academically leading to additional stress on his part. And my greatest fear, worry he will stop enjoying learning. He's smart, and yet it's so difficult for him to show us what's inside that amazing little mind. Fear of failure is an ever present threat to kids like Harri. He'd rather not try than fail at something.  Finding the balance between challenging him and increasing his confidence and sense of mastery is tricky. BUT that's what we have to do to keep him in the game.