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Sad and worried about ds. Sex chromosome disorder now being assessed for dyspraxia

(14 Posts)
Moominmammacat Fri 30-Nov-12 14:59:05

My DS was diagnosed as dyspraxic 12 years ago. It's been a rocky road but he's off to uni next year. The diagnosis stopped me shouting at him (as I had for the previous seven years) for spilling/dropping/breaking everything ... it's still frustrating as lots of things aren't any better than they were when he was a toddler. But although overall he is a happy creature, it's so frustrating for him to "have to work twice as hard as everyone else to get to the same place". No specific advice, but just be kind and patient and value what you do have rather than think of what you don't have. Hard though. xx

Whatever

One thing I have found a big help for my dyspraxic ASD son is a visual timetable for each activity/part of the day. So e.g. one for the morning showing toilet, brush teeth, get dressed, breakfast. And you can break each one down into a visual aid for that activity. So for breakfast, show getting the bowl, spoon, cereal and milk, then cereal in bowl, add milk to bowl, and then showing it all cleared away afterwards. That may be too basic for your ds, but you get the idea. And you can get him to refer back to his timetable after each activity. Maybe do each activity on a different piece of card, so he can take the picture with him to remind him what he has to do when he gets to the new room (and has forgotten already)

And yes, deep breaths, and simple instructions. Even take out the extra words, so instead of "ds put your shoes on", just "ds - shoes on".

auntevil Fri 23-Nov-12 20:32:57

How are you finding the new getting ready and out routine whatever ? Is it making for a calmer house?

WhateverNevermind Fri 23-Nov-12 01:10:02

Sorry it's taken me so long to get back but sickness and family problems has kept me off mn.

Yes swan it's klinefelters. If your friend is on the support groups or facebook ones I would probably know the name and yes it is all achievable. The geneticist told me and his dad to take what is written on the internet with a pinch of salt which is what we do. I can see ds's body shape though and worry about when he hits secondary school.

The dyspraxia we are waiting for OT assessment now and he's still seeing physio. I've become a lot more chilled out about getting out the door though and trying to help him but give him his chance to do it. For instance, I put out his school clothes one on top of the other the way he's meant to dress and breaking instructions down one at a time (without overloading him with three and more as I used to do).

swanthingafteranother Sat 10-Nov-12 22:43:25

sorry that wasn't very coherent...I mean it is very good for a dyspraxic person to be in a place where physical objects have a "meaning", like outdoors, where you experience them in a concrete way - ground beneath your feet, the smell of something, the activity you do relating to something you can feel like grass or treetrunk.
I would say one of the most difficult things is just lack of organisational ability - it is almost as if you have break sequences down to very simple instructions to hang onto them mentally, whilst being able to process other complex things successfully.

swanthingafteranother Sat 10-Nov-12 22:30:13

Porridge lover is so right about the driving. I can drive and I've never had an accident. But if I'm stressed, I find driving practically impossible and would much rather slog the journey on a bus, than take 10 mins in a car. I think dyspraxics benefit enormously from outside, nature, holistic things like cooking, crafting, reading because they are not inherently mechanical or spatial. I can give you the most sophisticated discussion on the finer points of art and literature but ask me to follow a elliptical set of instructions for putting a stair gate together I feel sick.

swanthingafteranother Sat 10-Nov-12 22:25:04

OP, I have a friend who has a diagnosis of XXY (K syndrome?). He is nearly 50, has many friends, worked very successfully, got a 2:1 from Russell Group uni, married, 2 children (by donor) great dad. Not diagnosed till his late 20's, when first married and trying to start a family. Looking back he realised he had occasionally been perhaps a bit temperamental, nervous, bit of a late developer, shy (ie: hated driving, travelling), which was perhaps a result of the genetic makeup, and a few physical traits, but he was never bullied, and just had loads of good friends,very witty, funny, well read and went interrailing like the rest of us. He is on hormone therapy now as is suggested for XXY sufferers, and I think that has redressed any problems that might have pre-existed. So don't despair on that count.
He is completely and utterly normal to meet and talk to, happily married etc. I suspect the profile is far more alarming in print than it is in person, and it has changed the way he has approached medical diagnoses you read...especially as every time he has clinic appt people expect him practically to have three heads and he just DOESNT.

As for dyspraxia, I think that is a whole different issue, and my genetically typical son (12)probably has it, as do I his mum!!! So I feel your pain. But as with anything it is good to make a few allowances but not so much that you give up on improvement. Ds's handwriting has improved immeasurably, his presentation is still terrible, but he is smart and good at loads of other things. We are currently pursuing a dyspraxia diagnosis just so the teachers don't get cross with him for not being able to draw, ridiculous as that sounds..In secondary school there is a lot of drawing. But ds loves sport, music, chatting, just not especially organised or good at judging social situations.

Please don't let it overwhelm you, it just is worth using it as a way of explaining some areas of his life which might need more help, or encouragement.

porridgelover Sat 10-Nov-12 21:52:52

At the top of this page there is a good definition of praxis in the movement sense.
Dyspraxia is a disorder of the ideation, planning or execution of a movement.

Do you drive? Think of how it was for you when you first started driving, where every single action was consciously thought through and double checked before you did it. And now, after a few years, you can get in and drive without concern.

Thats the difference between Dypraxic and NT....if you have dyspraxia, you never get to the ''unconciously competent'' stage. And actions that you think you have down pat, fall apart if you are distracted/ill/upset/worried.

Just as if, for instance, you, as a competent driver, were asked to sit into an unfamiliar car, drive to Edinburgh and park in a tight underground car-park when you got there; while listening to a heavy metal CD.
You are a competent driver under normal circumstances; but would (I imagine) find that very challenging.
Again, for the person with dyspraxia, they can become competent in the movement but appear to 'lose' the ability because of some other demand that may not be obvious to you or me.

For me, it is intensely frustrating to look at my DS on particular days; when the carefully written visual schedule is ignored, the routine of weeks forgotten and we still have to get to school on time. I shout. I beat myself up about it. I am normal. You are too; and you are concerned for your DS and you will cope if he has this diagnosis too.

Any of the Madeleine Portwood books are usually in the library and are a good start to help understand it.

auntevil Sat 10-Nov-12 10:48:07

There is a poster on here that has dyspraxia and can put it much better than I, but here's a simple statement that I read about dyspraxia.
when you reach for a cup of tea, you do it without thinking. When someone with dyspraxia reaches for a cup of tea, first they have to work out where their hand is in relation to their body, then where the cup of tea is and how much distance the hand has to reach out before it needs to make contact with the cup of tea.... Everything takes more time to work out = more effort = more concentration = more tiredness. What it doesn't mean is that in any way they are less intelligent, loveable or potentially brilliant than any other child.
I will confess that I still sometimes think 'oh for heaven's sake hurry up' - and his disorganisation drives me insane, but ultimately, growing up, I have to take some of the blame for not giving him adequate time to do things blush. They are not the DCs that you can really rush with! Learn to inwardly count to 10 and let steam come from your ears grin Just remember, they are not trying to be awkward - it's natural.
OT and physio have been excellent support. My DS like playing football, golf, swimming, netball. If you add this to core skill strength and stability exercises that you can do at home, he can be classed as passable at any of these activities. Not the first to be picked, but not the last either.
Yes, there are silly comments made at school, but he also has friends at school too.

troutsprout Sat 10-Nov-12 09:34:23

You need to draw a line and stop all that " if only I had" business. That way lies madness.
You were doing right by your boy with the information you had at that time. You will do even better by your boy now that you have better information.
Cut yourself some slack woman... We are all only human.

Ds ( 15) has dx of asd and dyspraxia . This was diagnosed over 5 years ago.I'm afraid I am no expert on dyspraxia though as his Aspergers has always been the biggie for him iykwim.
He had OT sessions when first diagnosed .He had unstable pelvis and shoulder girdles , low muscle tone, hypermobility and a tremor on his left side. He had poor muscle bulk in his hands. His writing was shocking.
He had exercises to do to try to improve his stability. He had writing exercises to improve his " automatic" writing( vision occluded)...and he was taught to "backwards chain" a task such as tying shoelaces etc.
If I'm honest... The physical side of the dyspraxia isn't a huge problem to him now. He is still slower to chain tasks together and sequence things. He hates pe... still finds any exercise painful... but knows he needs to do it. His writing is now beautifully neat.
The exercises were great at making us all realise what he was dealing with physically... We all did them together at first. Secondary school pe sessions have also been much more in tune with improving core strengths ... Much more useful tbh.( although he hates pe)
Sorry I can't be more help ... Somebody more expert in dyspraxia will be along soon.
I'm glad your boy is starting to get more help. How old is he? Ds's dx was fairly late and he has improved loads ... I'm sure your ds will too

PolterGoose Sat 10-Nov-12 08:38:27

Hi Whatever, please don't beat yourself up about this, no child comes with a handbook, and they are all different. Most of us muddle along, trying different things, and if we get a diagnosis we might try new things we didn't know about or hadn't thought of doing. I'm sure all of us could look back with an 'if only I'd known' but in reality most of us do the best we can at the time based on what we know at that time.

I expect someone more knowledgeable about dyspraxia will be along at some point, best wishes thanks

WhateverNevermind Sat 10-Nov-12 01:32:14

Thanks AmberLeaf

God the guilt has hit home. Even if he doesn't have dyspraxia I've always looked at his genetic dx shouldn't stop him from being able to do what others can. I don't push him as I know he's always been a bit behind hitting milestones but the day-to-day I expect him to be able to dress himself, use his cutlery, follow certain instructions because I've seen him do it before so think he's winding me up when he seems unable to do it the next day. Maybe I should have cut ds a bit of leeway sad

AmberLeaf Sat 10-Nov-12 00:43:58

Sorry to hear you are struggling and you are welcome here smile

Don't beat yourself up about having felt frustrated with him in the past, you weren't to know but you do now.

If he does have dyspraxia, once you know, you will be able to work at finding ways to help your son and make things easier for him.

Im going to sleep soon so ill sign off now, hopefully someone with more knowledge about dyspraxia will have more to say.

Keep posting here smile

WhateverNevermind Sat 10-Nov-12 00:28:58

As the title says really

Ds was dx xxy 3 years ago. It can bring it's own problems - social, behavioural, developmental and physical - but we won't know to what extent until he gets older and develops. What we do know is he will have to go through hormone therapy at puberty and will be infertile. Now I've been told he qualifies to be assessed for dyspraxia as his motor skills fall on the 5th centile. His fine motor especially are way behind.

I feel so sad for him. He was premature and small when born and his whole life has been full of appointments and assessments with various different health professionals. For which I am grateful in a way because I don't think his chromosome disorder would have been picked up otherwise.

I just look at my gorgeous wee boy and wonder how much more can be thrown at him as he also suffers a lot with chest problems. I worry about him being bullied as he gets older as the physical sides show. xxy already has this but if he has dyspraxia also? I remember how cruel kids are at school sad

I now feel terrible about shouting at him most mornings, and any other time, because he is incapable of getting ready himself. I thought he was just ignoring me/easily distracted in a way until the physio asked me how he was at organising and planning getting out of the door.

I don't even know what I'm trying to say. I've mentally dealt with his chromosome disorder even though it was a shock at the time but it's thrown me a bit with the possiblity of dyspraxia (even though I actually asked the doc about it 2 years ago as it just seemed to fit ds but was dismissed) There's so much worse I know and I feel a bit of an intruder here on the sn board.

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