I am so worried about DS (11), is this behaviour "normal" or do we need to do something? Sorry, it's a bit long....

[TheKitchenWitch]

I've posted about my ds1 before. Everything feels like a struggle at the moment and we need to decide if it's time to seek help or actually this is all just fine and we should back off completely and stop worrying.

This is what he's like:

• extremely disorganised and forgetful about things he doesn't consider important (ie school, home chores), but also quite forgetful about stuff he does consider important (eg will totally forget we're going to the cinema)
• unmotivated to achieve anything which requires effort, mainly school-related, but also will give up if it's something he'd like to do but it requires effort
• astonishingly sensitive to pain, will cry and scream in agony regardless of what the injury is
• becoming sensitive to textures on hands, absolutely revolted if hands get sticky or paint on them
• senstive to some smells to the point where he is gagging (often smells which I can't even detect)
• overeating, not having a feeling of being full (he never used to be like this at all)
• seemingly ignoring or not understanding instructions that i have just given him and then claiming "I forgot" even moments later
• getting very angry about situations he deems unfair or if he's told off / punished at school, even if he has quite clearly done something wrong
• very sensitive and emotional often for no outward reason ie he'll think of something which makes him sad

He seems to be getting worse rather than better, he doesn't seem to pick up routines AT ALL - he still doesn't seem to understand that he needs to get up at a certain time to be able to get ready, has NO IDEA what clothes he needs to wear etc. He's been at school for years and yet it feels like every day is the first time he's doing it.
We have loads of routines and help in place to make sure that things don't get forgotten but I feel like he's relying on me more and more and if I don't think of it / remind him / do it, it doesn't get done - and - this is critical - he doesn't care about the consequences. He doesn't respond to punishment or reward, he focuses on that instead of the behaviour which caused it, and nothing changes.

He is also:

• incredibly creative and imaginative
• can recall astonishing facts from memory about things he's interested in, but also relate them to other things he's learnt (not just repeating facts)
• reads loads and gets great pleasure from it
• has a witty sense of humour

It just feels like life is becoming more and more of a struggle instead of getting easier. The normal every day things which should be routine by now seem to still be stumbling blocks for him, and then there's all the other issues on top of it. I miss my happy little boy :(

Some of these sound like sensory processing disorder

Could be Aspergers - lots of sensory issues with food, clothes, noise

My 11-year-old is a lot like this. He has Aspergers but it’s hard to separate what is that and what is 11-year-old boy.
Has he just started high school? A lot of my friends are also struggling a bit with their (NT) boys at the moment as there’s a lot more for them to remember and take responsibility for.

Apart from the over-eating, he sounds like me! Highly functioning adult now, but do have to write everything down or I forget. My mind just wanders. I'm what you'd call absent-minded probably.

We had a similar realisation a couple of years ago with DS2, all the things we'd thought were quirks of our little boy became more and more noticeable and the gap between him and his peers more obvious. DS2 has the organisational/memory/emotional issues you describe but not the sensory ones and is in the process of being diagnosed with ADD.

I think it sounds like there's 'something' that needs further investigation with your DS. I monitored DS2's behaviour for a few months, spoke to school and did some research and then went to the GPs, perhaps you could do similar?

That sounds a lot like me.

I was diagnosed with ADHD-PI this year.

I'm 49. 😳

I am also dyslexic.

The thing with neuro developmental disorders such as asd/dyspraxia is they become more obvious as demands outweigh capabilities.

So the chances are now he’s 11 (I’m assuming secondary?) the demands to be self organised have increased and he can’t manage those and the things he could, it appears like they are losing skills but in fact they can’t manage previously learnt skills because they are trying to focus on new ones.

Eventually manifests in this appearance that they don’t don’t care anymore and don’t be bothered to try.

But it’s a perfectly normal human response - it’s unlikely you’d keep trying to backflip if it turned out you weren’t flexible enough - even if you spent 6 months trying previously (iyswim?).

I’d arrange a meeting with senco. Discuss these concerns and say that right now punishment is making it harder for your ds and you’d like to work with school to help him manage. Also ask them to refer for assessment.

Please get him help. For help to be effective and timely you may have to pay. It will support his future immensely. If this is not an option push hard for CAMHS review. Document everything and confirm all advice in writing.

There are things you can do for him assuming he isn't diagnosed with anything.
For example:

He must lay out all his clothes for the next morning, the night before. Similarly, gym bag must be packed night before and books for school etc.
Set reminders in his phone for various things? Better still, get him to concentrate enough to set them himself.
Check that he's not anaemic? Just regular bloods from GP which might account for what you might see as laziness.
Can't think of too many occasions where hands get sticky or get paint on them, but surely he can just wash them? Or does it upset him unduly?
Hugely sensitive to smells myself so any advice on that from anyone else I would be very interested to hear about.
The over-eating? Is he overweight or could it be a growth spurt?
I have to really really want to concentrate to listen to instructions (nowadays I just write them down), otherwise they go in one ear and out the other. I'm not an auditory learner.
Sensitive and emotional at this age is to be expected maybe?

Yes, he has started high school, so I'm sure some of it is feeling overwhelmed with the new situation.
I talked to a friend this morning who has a 13yo dd and she says a lot is just like her (the dd) and her friends - she reckons pre-teen hormones also play a huge role.
I'm not in the uk, so access to things like senco/camhs very different here, and it's not really as readily available. The paediatrician would be my first port of call, but they aren't really very good at this (I have friends whose kids are most definitely ADHD etc and are having a nightmare getting any sort of assessment).
Can anyone recommend a friendly FB group for exchanging ideas and advice as to what actually helps (the laying out clothes for example is something that my friend mentioned today).

A lot of these symptoms resonate hugely with me. I have fibromyalgia. I'm extremely sensitive to pain, if I get a flare up I honestly can't even be hugged. Candles and scents make my throat close over, I'm sensitive to clothes and food (can't eat things like sausages or sandwiches with more than 1 filling)
Also get brain fog and I'm lethargic, unmotivated and genuinely don't know what day it is when I'm getting a bad episode. Take him to the GP and mention fibro maybe?

yes, worth seeing the gp about.
could be anything from mental health to deficiencies (b12, d3, iron) to additional needs (asd, ads)

Just a little extra note, in case, like me, he's not an auditory learner. Literally, you could lecture me for two hours on how to screw in a lightbulb and at the end of it I still wouldn't know what to do. I'm apparently a visual and (can't think of the word for it - but it's where you learn by doing things yourself?)) kinaesthetic? learner.
As I said, a lot of what I hear goes in one ear and out the other, yet I can regurgitate an entire page of a book after reading it once.
It's just the way I learn.
I also seem to be 'away with the fairies' a lot of the time. Engrossed in my own thoughts.

So he might have heard what you've told him, but it just didn't register as a priority with him. In one ear and out the other.
Written notes or iPhone reminders might help with that aspect.

I cannot function without lists.
On the positive side, I'm a great person to tell a secret to, as I'll have forgotten all about it by the following day

But I definitely agree that just a general GP check-up wouldn't be out of order for a routine blood check. Best of luck.

Are you laid back person yourself, OP, or prone to being hypersensitive?
How emotionally do you react to all of these behaviours from your son -- do you feel quite emotional about them each & every time?

Ask him to make a visual list for the morning, alongside times. (Teeth by 7:50, dressed by 8, etc...) Keep it by the clock.

My older son has dyspraxia, so organisational skills are a big problem for him.
The Dyspraxia Association website has some useful information. It may not all be relevant to your son but there are lots of ideas of how to help.
Sensory issues can also be part of that.

Hi
My son is 10, very talented, arty, reads a lot, and likes dressing up sometimes dancing, always losing himself in his imagination.
Unfortunately despite all the creativity and flamboyance he can show signs of anxiety- grinding teeth in his sleep- bedwetting and has now began to have a slight tick which does seem to get worse sometimes. Im really worried - does anyone have any advice or experience of this?
Thanks!