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.

 

 

 

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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

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?

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.