A Little Bird Told Me

I 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.

 

IEP – Follow Up

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

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.

 

 

We are NOT helicopter parents

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

 

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.

 

 

 

Tabitha’s Gluten Free Dishes – more than just different flavours

About Tabitha and her mission. I’m so down with this.

Grain Free?

 

wikimedia commons

I’m considering going grain free. When you have diffabilities in the house it’s almost inevitable that you end up trying a special ‘diet’ at some point. In my case it wasn’t the ADD, but the exhaustion I’ve been feeling for years that led me to explore dietary avenues. I wouldn’t say it’s chronic fatigue, except it is fatigue and it is chronic. Plus my older daughter had some behavioural issues. You might assume one is a corollary of the other, but I have reason to think not.

So I tried gluten free; it was difficult, expensive, tasted horrid, and there were no noticeable benefits (for our family). However, I did, kind of inadvertently, go completely grain free for a while, and lo and behold I felt the best I’ve possibly ever felt, in terms of emotions and energy. It was bloody hard to keep up though, so I have lapsed considerably. I’ve been through this cycle a few times now. First there’s the uncertainty what to eat in place of bread as a staple. Then there are the cravings. Ye gods. I’ve never been addicted to anything, even coffee, but after that experience, I have the deepest sympathy for anyone trying to kick a chemical habit.

Actually, I believe there is a physical addiction cycle at work, though I don’t think mainstream science would agree as yet. But I believe there is enough evidence, never mind commonsense, that what we put into our bodies has an effect on our whole system.

In any case, there are the cravings, which inevitably I cave to eventually. Whereupon which the cycle begins again; low energy, low mood, wondering how I could be hit so hard with the stupid stick that I would do this to myself again.

What I couldn’t understand was why all grains could be a problem. I still don’t know the science behind it, if there is any available, but I have come across some sites where people are living grain free and feeling great, which is news to me, but confirms that for whatever reason bodies might reject grains, it’s not my imagination.

So. I would love to try it, because I would really, really love to have energy and a stable mood. But I don’t know if I can make this work. I’m not much for cooking and baking (did I mention I’m not so organised?), and if there’s bread in the house I’m picking I’ll eat some. And alternative flours are expensive. But you can’t always control your gastronomic environment, and even one lapse sets your system back. So is there any point in even trying? Or is it worth the effort just to have at least some good times?

If anyone out there has experience they’d like to share I’d be interested to hear it!

And if you’re interested in learning more about going grain free, here are a couple of links:

Grain Free Living

Grain Free Gluten Free

Grain Brain

Brain allergies

And one from our own WP family: Tabitha’s Gluten Free Dishes

 

 

 

Sleep tips from a sensory integration therapist

 

Sleep – like a baby?

Children and adults with ADD/ADHD often (usually?) have trouble getting off to sleep. For obvious reasons this can be frustrating for all.

My older children and I are typical. I struggled to pass into the blissful realms of slumber, until children and exhaustion happened. My kids still lie awake for hours. Although, ”lie awake” sounds so passive. In fact, my daughter, who is more ADHD than ADD, talks and sings for at least an hour, expecting participation from her long suffering brother, before sleep comes.

My son, who has ADD and Aspergers among other things, worked for a few years with an occupational therapist, a sensory integration therapy specialist, and she gave me some tips to help. The ADD brain, along with other sensitive neurotypes (like autism spectrum and sensory processing disorders), is very susceptible to stimulation,  and though we probably all know not to stimulate children before bed, what we might not realise is that things like brushing teeth or hair (although I personally find hair brushing soothing to the point of catatonia), even getting dressed, and the light level, never mind watching tv, are all stimulants to the system.

Her recommendation was to avoid any stimulation in the hour before bed. That means changing into pjs and doing all preps an hour earlier, and then letting the child (or yourself) sit quietly in a dimly lit room for the last hour before we expect sleep, reading or listening to (slow) music.

She also mentioned blackout curtains or blinds. Blackout should be a part of every ADD family’s sleep armoury. Although to be honest, even the smallest chink can disturb my sleep, and have you ever tried to make those suckers chink-less? Yeah. Well, they’re still much much better, as in, in a different phase of existence, to not having any blackouts.

My son still tells me he wakes with the first rays of dawn, but I’m pretty sure those rays reach his optical nerves substantially later than they would without the blinds. And luckily, he’s old enough now to entertain his own self when he wakes up rather than welcoming mummy prematurely to the new day.