Anyone else have 2 kids with sn, one severe and one so mild you don't even think of it as sn?

[TopBitch]

I spend so much time worrying about dd1's disability, that I forget about dd2's ADHD. I don't even think of her as sn. She was only diagnosed recently, but even so, she's just so normal in many ways. Well, normal compared to her sister. I hope I'm making snse.

Kind of know what you mean. DS1 and DS2 (9 and 7) are bedwetters and this can count as a SN.
In reality this is nothing in comparison to DD's double incontinence. In a normal family two older bedwetters would be viewed as quite major, but when you have a child who needs to wear nappies whenever she's not in the house, two boys in nappies just at night doesn't seem like much at all.

Dd and ds have the same condition- Joint Hypermobility Syndrome- but ds is so mild that I do tend to forget about him. Which is unfair because I do know he worries.

sorry to be nosy but what is joint hypermobility syndrome, I've never heard of it.

JHS is a genetic chemical imbalance that means your soft tissue (like the ligaments that hold your joints together) is soft and floppy instead of being firm and tight and holding things in place.

So your joints can bend in ways that joints aren't supposed to; dd's knees literally bend backwards when she walks. This causes dislocations, subluxations (mini-dislocations) and chronic pain from the effort of holding it all together. I have known dd to put a joint out by stepping off the kerb. So even if she looks fine, she can collapse and fall at any moment.

For dd it's her ankles, knees, hips, lower back and wrists that are affected; with ds it's only his ankles and wrists so far. SO he'll typically get a pain if he does too much walking; and things like holding a pen or using a knife and fork are very difficult for him. Dd quite often has to use a wheelchair and has days when she can't get out of bed at all because of her back pain. She is also really prone to infection because her body is weakened by chronic pain.

It also leads to a lot of falls, partly because of the wobbly joints, partly because people with JHS have very poor proprioception (they don't really know what their arms and legs are doing) and poor balance. Dd is no longer allowed to use the stairs at school because she has had so many falls.

Other problems are incontinence and skin problems- you get odd scars because the tissue doesn't heal as it should. When she was a baby she became really poorly because she was too weak to suckle.

Also, there is thought to be a fault in the way nerve signals are transmitted to the brain, which means painkillers and local anaesthetics tend not to have any effect, and that injuries can carry on hurting a long time after they've healed (like feeling pain in an amputated limb).

I feel the same way about DS2, he has Downs Syndrome and various other medical conditions.

Despite having frequent hospital appointments with him, already at 1 year old we can see him doing things that DS1 (severe ASD) never did.

He really is such an easy going baby that we often forget that he has a disability at all.

Strangely the same can not be said for people we know, who seem to think that because DS2's disability is visible, it must be far more severe than DS1's, which couldn't be further from the truth.

Cory - I had no idea how bad it was, really puts my DD's problems in perspective and my DS's problems are virtually nothing.

I've been thinking DD's incontinence is quite major but the think that incontinence and nappies are some of the least of your worries makes it seem so sad .

I feel for you.

Thanks, Sunshine. It's a lot better than it was, actually; the incontinence is pretty well under control now (she was on medication for a bit which helped) and even the pain is better than it was. A combination of physio and pacing has done wonders. The worst bit was before she got diagnosed, when the consultant thought she was making it up; and then for a long time they kept telling me I had to force her to keep active; that was wrong, but we didn't know.

She is able to attend school and doing really well, and has lots of friends, so there are lots of positive things too. I just hate seeing her in pain.

But poor ds gets pain too, and somehow noone really has the emotional energy to deal with him.

yes. ds1 has Aspergers syndrome and it used to be a huge deal to me. But since dd was born with severe epilepsy and severe cerebral palsy I hardly even notice ds1's odd ways. If he can walk, talk and wipe his own bum we're doing fine.
I think back to the time I was having to coax ds out from under the bed or have him walk into a room and shriek 'it smells,I want to go home' and the food refusals and now they seem easy compared to dd's 24 hours needs, toxic drugs, surgeries, tube feeding etc etc. Plus he will live, she has a 50% chance of passing away before 10. He will be able to lead an independant life even if its as a computer nerd, she will require 24 hour care for ever.
So the poor lad has to get on with it now!

There's also conflict. dd vocalises and makes 'CP noises'. ds1 can't stand them as he is noise senstitve. but what can I do?

and ds2's dyspraxia doesn't rate a mention. He finds writing tough and can't ride a bike or catch a ball. He's 13. I haven't even tried to get help for him cos a, I don't have the energy and b, there probably isn't any at his age.

just reaslised that it looks like I can't produce non-SN children! My eldest girl is non-SN apart from the whole highly strung rnning away from home thing.
Sigh. I'll stop breeding now!

NMC, how old is dd1? It could just be a teenage girl thing. There's still hope, if that's the cse. It seems you have a lot to deal with.

I'm glad for your posts. I feel bad sometimes because I don't help dd2 more, but to be honest I just don't notice that she can't do some things. I hope that doesn't make me sound like a horrible mum.

Someone at school had the same thing cory. I remember that she dislocated shoulders really easily (saw it a couple of times) and that she could do cool things with her fingers.

Graciefer - what do you say to people when they sort of make that known . I've often had people assuming that ds1 is fine because he 'looks fine', not sure how I'd respond in your situation.

ooh graciefer- have just enquired about riding for the disabled locally- if the information looks interesting I'll forward it onto you. There's a waiting list apparently but I know your ds1 likes donkey riding.

topbitch, dd is 16 and has lived elsewhere for 2 years. She had a condition called 'giant chip on shoulder' like most teens but unlike most teens met an arse who encouraged her and said she could live in his house.
It was a bad time for all attention to be focused on dd2 as she was having major fits and lots of hospitalisations.

Sort of. however though ds1 is milder as he gets higher rate care (ds3 mr) as he is aggressive / bad sleeper

but ds2 is being assessed for dyspraxia. As I said to senco, 'he'll have to try harder than that for attention in this house!' (she does get my dark soh)

ds3 is asd and about to transfer out of MS school to sn unit

Sort of. however though ds1 is milder as he gets higher rate care (ds3 mr) as he is aggressive / bad sleeper

but ds2 is being assessed for dyspraxia. As I said to senco, 'he'll have to try harder than that for attention in this house!' (she does get my dark soh)

ds3 is asd and about to transfer out of MS school to sn unit

[quote]Graciefer - what do you say to people when they sort of make that known . I've often had people assuming that ds1 is fine because he 'looks fine', not sure how I'd respond in your situation.[/quote]

I normally just tell them the reality of the situation and the fact that it is highly likely that DS2 will live a far more independent life than DS1 will.

Unfortunately DS2 will always face a lot more ignorance and discrimination from other members of society because to a certain extent he wears his disability on his face, although strangely, sometimes this is an advantage (opposed to a 5 year old with severe ASD that is invisible to the general public).

Would be interested about how you get on with the RDA, we checked out the one just past Bittaford, but not sure if DS1 is old enough quite yet.

oh is there one out there too? This one is Roborough way. Will let you know.....

I've noticed when talking about termination to people that they're often surprised that ds1 is more disabled than anyone I've ever met with DS. People are so ignorant about LD's and prejudiced. I can see that there are pros and cons with visible versus invisible disability.

another nosy question jimjams - did you say your lad can use pecs and makaton?

I was also thinking about the original post and realised that not only does one childs SN sometimes make the others appear not so severe, but the same can be said about individual problems.

That probably doesn't make much sense, but I will try to explain.

Aswell as being born with downs syndrome, DS2 also had bi-lateral talipes (club feet), nystagmus (uncontrolled movement of the eyes often with poor vision) and a number of other conditions, the most recent of which he has been diagnosed with is 'obstructive sleep apnea' which needs surgery to treat.

Now any one of the conditions would of filled me with worry and dread on their own; DS2 having both his legs in full leg plasters for the first 8 weeks of his life should of been such a big deal for me, but to be honest the worry of the downs syndrome and the other potential serious complications (such as heart problems) at the time, made all these other conditions seem, well less to worry about.

That doesn't mean that I think that any of those conditions are nothing to worry about, absolutely the opposite. Infact when my DS1 was recently ill and was vomitting all of the time, worrying about that bout of sickness took precedent in my mind, although in reality it was just a 24 hour bug.

I think for me, if I had to worry and stress about everything all of the time, I wouldn't be able to cope and would quickly lose it, so I think my mind priortises my worries automatically for me, in order for me to stay sane.

Oh, would be very interested to hear about one in Roborough, could be a good direct payment activity, although having teething problems with direct payments or being able to use them up at the moment, so need to contact SS to find out about having more than 4 staff on the books.

He uses PECS well, and has used Makaton a bit since he learned to imitate. He can't really reproduce the signs though (he has loads of motor planning problems) so he has his own versions of the signs. He signs school and train (arms tumbling like 'wind the bobbin up' rather than the train sign). He can do biscuit and he can do toilet. He also hits his chest hard for shiatsu (which derived from toilet I think). That's it though. oh and he taps he mouth for food.

I've had more than 4 staff on the books before -didn't know there was a problem with it. Mind you I haven't filled in a return for ages (have lost a book of cheque stubs) so am in trouble with them anyway. And I have too much in my account but that's because they told me they were cutting my summer payments.

Know what you mean Graciefer. dd also has nystagmus but I haven't even thought about it cos her epielpsy is so severe. One thing at a time!

DS1 has mild dyspraxic/AS traits, though is undiagnosed. DS2 has severe autism. When they were toddlers, though, they were very very similar - so much so that we thought 'DS2 can't possibly be autistic, he's just like DS1 used to be and DS1 definitely isn't'.

The difference between them is that DS1 seems to be gradually developing out of his SN traits (though we get mini-regressions now and again, or new things surface) whereas DS2 isn't.

Ds1 could really do with a lot more input from us on things like fine motor skills, swimming, bike riding etc. but doesn't because we spend such a lot of time thinking/planning around DS2.