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.

 

How to Domesticate Clutter (Or, Make Like the Borg and Assimilate)

domesticated clutter demonstrated

domesticated clutter demonstrated

Lately my already tenuous hold on household order has slipped. Luckily I love irony, or the irony of creating chaos by writing about it would be killing me.

But I do and it’s not, and I am somewhat saved from chaos by some fail-safes I prepared earlier.

Like: the fact that I already had my bases covered for the eventuality of disorder prevailing (because it was going to happen, someday, somehow). Three kids, two adults and a dog living in 85m2 was always going to be a challenge, as I’ve mentioned before.

open shelf storage

What has saved my home from uglitude is:

1) accepting that there will be clutter

2) utensils and appliances that are functional as well as beautiful, or well hidden

3) finding creative storage spaces (from vertical storage behind doors to windowsills – such underutilized areas in minimalist philosophy!)

4) keeping it eclectic (matchy-matchy is far harder to achieve by shopping second hand. Plus, it’s really, really dull.)

plain shade wrapped in a shawl atop a stack of home magazines - storage for shawl + hair decoration + magazines = boheme bedside table and lamp

plain shade wrapped in a shawl atop a stack of home magazines – storage for shawl + hair decoration + magazines = boheme bedside table and lamp

5) going with a boheme vibe which kind of soaks up, or embraces, clutter.

Yup. Embraces.

My feelings on clutter are this: it’s better not to have it. I regularly go through our cupboards and throw as much as I can out – which is never ever enough to go minimalist, even were I so inclined. So, if you are going to have clutter – and for some of us it’s inevitable (and apparently for the sake of creativity you’re better off not getting up hung up over it anyway, according to this comforting little piece) – you must, like the Borg, learn to assimilate.

Thus, all our utensils and stationery and paperwork, toys, schoolbags and hoarded treasures are either in and of themselves visually appealing, displayed appealingly, or contained in something visually appealing, or at the very least tidy. I collect containers of all sorts when I come across them especially for those little odds and sods which end up lying around until they’re rehomed.

fabric covered container

fabric covered container

Someone commented in response to my post on beauty and discrimination how unnecessary it seemed to choose between intelligence and attractiveness when a person could embrace both as a gift. Broadening the point, I get the feeling that greenies like me (and busy mommies) have a tendency to eschew attractive surroundings, assuming, I think, that busy and/or frugal lifestyles cannot or should not also accommodate beauty. But me, I am an artiste, and uglitude sucks my energy and disorders my mind. But I don’t think it’s just me being precious, I think we all function more efficiently in comely environs. Humans are biologically programmed for aesthetic pleasure, so I don’t feel a little bit bad, even as an environmentally-conscious greeny, for desiring attractive surroundings. I’m convinced it enables me to be more productive and creative.

Feral vs Domesticated Clutter

Of course, there is more than one kind of clutter; let’s narrow it down to two kinds – feral and domesticated.

Feral clutter watches you with hostility and retreats from taming. It is unpredictable. Do not turn your back on it. Domesticated clutter is far friendlier. It allows itself to be wheedled into co-operation with bribes of food. And what you want living with you in your home is the domesticated variety.

Domesticated clutter may be, well, still clutter, but it works with one toward a purpose, and thus one feels that though “everything” constitutes a lot of “things”, still everything has a place. By which I mean, in my house, I know where everyone’s crap is at all times. But at least it’s nice crap.

making whoopie with books

making whoopie with books and other nice crap

So how do I justify my desire for an appealing home space while preaching thrift? Simple. Op shops are my thrill. I love a good rummage. If I ever had (just dreaming here) a day off from toddlers and kids, that is where I would go. Just me and the junk. Yep – weep for my sad little hobby. But it gets the job done, and how. I recently, in a period of obsessive organisation, upgraded our household storage from almost none to at least interesting and (to my eyes at least) attractive, for a fraction of the cost of the thrifty suggestions by the idea mills, through my weirdo secondhand shopping habit. For literally a few hundred smackeroos I revamped my entire house. Yu-huh. (High-fives self.)

I just love getting one over on Big Business plutocrats. I realise that if everyone descended upon their local op shops they’d be emptied in days leaving just the dross, but really, people, we do not need so much stuff. Think twice before you buys. (Erm…yeah…scraping the bottom of the rhyme barrel there…)

First World Expectations and the Surprising Evil Role of Pinterest

cunning out-in-the-open storage

cunning out-in-the-open storage of books, ornaments and children’s art

We may have a problem with our expectations. I was brought up in a third world country, and this has shaped my standards. But this is not necessarily to insult the third world’s standards. Maybe the first world’s standards are too gorram high. Dusty baseboards? Pfft, seriously?? I’d rather read another book to my kid. There’s few enough hours in a day. A new kitchen? What’s wrong with the old one? Does it truly need ripping out, or have you just put too many hours in on Pinterest? Put your hands in the air and step away from that Board… Really. I know the siren call of Pinterest; how it drowns out the voice of reason. (Having said that, I can point you to some great little boards where people have made sweet interior decorating whoopie with very basic, if not sub-par, spaces.)

Assimilation and Futility, Pushing the Borg Analogy to its Limits

I’m not going to even try to pretend I’ve got it made in chaos wrangling, that would be….futile. As I write, there’s the debris of a toybox explosion around my feet and I didn’t quite get around to unpacking all the groceries. But that’s my point – sub-perfection is O.K. If you can look around your place and it reflects you and makes you happy, you’ve succeeded in making whoopie with what you have.

 

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.

 

 

The Little Things

the little thingsThere are days when I look around, and chaos has defeated me.

At this particular point in my life, me and chaos, we have a working relationship. A truce of sorts, at least in the physical realm if not mental. Usually. But some days, with all of us in this little space, I let my guard down and bam! bedlam reigns. And I’m paralysed. I don’t know where to begin, and all I feel like doing is crawling back into bed to hide.

Sadly this is not an option and I could very easily give in to gloom. But I have learned that when paralysis sets in, it just takes the first step, doesn’t matter where or how small – just that first toy back in its place – and the cogs start turning again, until eventually, I’ve wrestled chaos to the ground. Well that’s how I tell the story.

I guess with a lot of things, it takes small steps to make a big difference.

 

 

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.

 

 

Pins and Needs

Not my beautiful kitchen.

Not my beautiful kitchen.

I’m a bit of a Pinterest fiend. This is both a blessing and a curse, just like chocolate really. Pinterest helped me embrace the possibilities of vertical storage. You will hear me mention vertical storage more than these two times if you read more of my blog. Vertical storage is my friend. Vertical storage can be your friend. Vertical storage is undiscriminating, and vertical storage does not have to be aesthetically challenging. I will write a post on all the artful vertical storage with which my home is blessed.

I mentioned Pinterest is also a curse. This is because it can lead me to lose all perspective on why I do not need a shiny white minimalist scandi-inspired interior splashed with tasteful pops of colour, which can lead to little awkwardnesses such as outbursts to unsuspecting husbands about the existential loneliness of being the only one to care about the state of the kitchen cabinetry. Followed by a slow return to equinamity and taking to said cabinetry with paint from the garage. Om mani padme hum.

Thusly* I embrace a bohemian interior style, because boho obviates the minimalism with which I will never be burdened, but convivially accommodates the clutter 5 people inevitably collect with style, and me, I am a stylish gal.

 

*grammar police get a grip