A Little Bird Told Me

little birdI call my older daughter my little bird, because she is small, and brown, and her mind flits around up in the clouds. At all of 7 she tells me her raison d’etre is to make people happy, and I believe she will. She is a gift-giver, always slipping people cards and bringing wild flowers. When our cousin died, he had among the bank cards in his wallet very few personal items, but one he did have was a love card she had made him once when he had been feeling low.

She’s also my middle child, and a hyperactive monkey, so I wear a lot of parental guilt over the amount of (positive) attention she is apportioned.

And she is prone to silent anxiety. Like me, she thinks too much, but I’m ahead of that little game, and I’m fearsome in preventing anxiety getting long-term accommodation in her head.

One of the most influential choices we make for sensitive kids is the school they go to, and we’re relatively new to the school we’re in now – my daughter only started there at the beginning of this year, after two years at another local school. But it is fantastic. I still have my ups and downs, but mostly this seems to be me worrying too much, and perhaps being prematurely fearsome.

And the proof is in the pudding, or the eating, or the eating of the pudding, and just the other day my little brown bird skipped out of school and commented what a shame it was that school had to end so soon! Well, dress me up and call me Sally. I myself never had such a thought in my life, but I think I dropped a thousand lead weights of worry right then. She’s happy at school! It doesn’t get much better than that.

 

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Reflections on Special Needs

Adams Corner - Schulhaus 2
I went to another meeting at my kids’ school last night, this time a general information evening on programmes available through the school for kids with special needs of various sorts.

Sadly there weren’t many people there at all, but I wonder if the very fact of having special needs children also makes it harder to get out the door of an evening. In any case, being actually the only parent there (along with a couple of teacher aides) gave me the opportunity to ask a few questions informally. One of those was, what is ”normal”? My mother keeps asking me this, as everyone around us seems to ”have something”. Although it may be an unfair question in the context of our family, which is pretty much riddled with ADHD and Aspergers and other eccentricities. Maybe there’s just no “normal” in our family and circle of friends.

But my question is genuine and not loaded, though I think it was misunderstood that way, as the answer came back in reassuring words that included “no such thing as perfection”. No, I get that, but I am not asking if other kids also have ”imperfections”. I also get that people are all somewhere on a a theoretical bell curve of normality. But what is “normality” if you were to diagnose it? Does anyone have diagnosable normality?

I guess it’s the outliers on the bell curve, and specifically the ones who struggle with life, who are labeled with things like autism, ADHD, etc, because by nature, diagnoses measure dysfunction, and those who function well, or ok – or seem to – within the system are considered “normal”.

But what strikes me, and it’s heartbreaking, that it’s very, very hard for most of those outliers to be ok. Even with the knowledge and personal experience I have as a parent, and the support of a wonderful school, it’s still hard for my kids to be ok, so for those people who grow up without understanding parents and schools, the result can be disastrous. These are bright kids, with amazing, out-of-the-box minds, who are very vulnerable.

One hurdle to receiving what help is available is that vulnerable kids are not always obviously vulnerable. A child can be unobtrusive and obedient, and be quietly crumbling inside. Or they may be acting out and causing havoc, but this behaviour is in itself a communication that all is not right. And sometimes, ironically, the parents may be doing such a good job that it appears that strategies and accommodations are unnecessary.

However, the information coming out of the talk was reassuring. There is now, unlike when my generation was at school, an emphasis on inclusive education for special needs kids, and our school especially, as well as apparently the Ministry of Education itself finally, is stepping up to take care of individual needs. One concern would still be whether kids like mine, whose needs are not ‘severe’, will slip through the cracks. I think this is still an issue in the Ministry in general, but at this school, they are definitely learning to cater for higher functioning kids as well, and that is a relief, especially as we face high school in the near future.

 

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.