Do those of you with SN children sometimes look at some 'problems' on this board and think if only?

[oliveoil]

I lurk quite frequently on the SN board and am astounded tbh at some of the things you have to deal with on a daily basis.

Then I think of some of the 'problems' that I have posted about and they seem pathetic in comparison.

Do you sometimes roll your eyes at what you see posted?

Cross-posted with Ghosty. Sorry, didn't intend to be crass. What a heart-rending story.

No don't be sorry it is just so sad.

I have a friend who lost her ds at 14 yrs he had loads of feeding problems, learning problems etc. Year before he died she had another ds who last year at the age of 3 was diagnosed as severely autistic. This lady is amazing. Don't know how she does it, I couldn't. Just think life is so unfair.

ghosty

i have to admit to sometimes thinking that maybe it would've been better if. well i cant even type it. But he has fought so long and hard to get this far, we cant lose him now. It is hard woprk caring for a disabled relative, some people dont reliese how your life revolves around caring, from the moment i wake up, til i go to bed i am constantly waiting for the phone to ring, or trying to get things sorted for when Peter comes home. i am just glad that atm i dont have to fight with SS for support and equipment as Harefield are going to sort all that out. But the pressure thats on us is amazing. If peter comes home with his machine then the school run will take twice a long, as i have get the kids in the car, help peter in with his machine, put the trolly in the boot. get him out at dd1 school, set up the trolly and machine, get all the kis out, walk to dd1 classroom, go back to the car, get kids in, get peter and trolly back in, then go to dd2 pre-school and do it all again.
i am shattered thinking about it.

Misdee - Isn't there anyway a carer can come and help while you do the school run?

Had a think about this and no, I don't see other posters' problems as pathetic although I have a child with asd and sld. I've come to the conclusion that it's because I too read some posts on the sn board and wonder how people cope. I have trouble seeing myself as part of the 'sn' group sometimes as there are people with many more problems to deal with and I have it easy by comparison. Despite having no speech and few communication skills my ds is healthy and happy and that makes me feel very lucky. When he was first diagnosed the HV seemed to expect me to be devastated but I really wasn't, partly because I had had a long time to get used to the idea, but mostly because I had the perspective of my friend losing her little boy at 7 hrs old.
If that makes me sound a bit pious, I do still get in a state about inconsiderate parkers, dh leaving the used teabags on the sink, my sister saying I'm lazy because I don't go out to work etc. Maybe I'm like JakB and take out my frustrations on the little things rather than the big things. But no, I don't roll my eyes!

Misdee - do you have to provide 24 hours supervision for Peter?

Surely that should be separately funding if you are also doing school runs etc???

yes soapbox, peter has to have a person who is trianed on LVADs with him at all times. so the usual sitting service that SS offer would be no good. will have to be specilist nurse. we have been told it may be easier for SS to provide a taxi for the kids.

misdee ... I just don't know what to say ...
How you cope is beyond me ...
I am currently whingeing to DH about how tired I am ... And I am, I am shattered at the moment ... and I have not one teeny little weeny problem in my life really ... jeez ... I really wake up and smell the coffee don't I?

I know this is somewhat off the topic, but it is something I keep in my mind always, when I think I have it tough. When ds was 8 months old, and had had yet another sleepless night, I had mastitis again, dh and I were at each other's throats from lack of sleep, I was feeling pretty sorry for myself. I was walking around the block for the 100th time having a good cry. Walked past a funeral home with hearse outside. Inside the hearse was a tiny white coffin with a blue flower arrangement that spelt out Milo. And all I could think is that Milo's mum and dad would give absolutely anything to have been up all night with him. It totally changed my outlook and I think of little Milo often, and thank my lucky stars.

they have changed my daughters school from SLD (severe learning disabilities) to PSCN(profound severe and complex needs). basically it has meant that aswell as taking children with severe learning disabilities (sometimes often physical) that they are now taking alot of children with complex medical needs aswell. i mean severe medical nbeeds. Soa swell as coping with severe physical, learning needs you have to be taking your child for major operations, have problems feeding, limited life expectancy. They are still all gorgeous children but I find it very grounding aswell

ghosty- that's heartbreaking- but also goes to what is behind some of the really crass comments people sometimes say. I was talking to a friend yesterday (having just a phonecall full of crass coments from someone) and why people do that. We decided that its because often people really don't understand that you love your severely disabled child every bit as much as they love their normally developing children. I'll bet that poor woman had had people telling her it must be a "relief" (what that my child has died?) and good for her for saying what she did.

you know at my sisters funeral, my sisters boyfriends moither said to my mum "well this (meaning my sisters death) was bound to happen sooner or later" and the amount of people who say to you "it must be a relief as she isnt suffering anymore"

all you want is for your loved one to still be here, not for someone to basically say, or insinuate that that persons life was worth less (or nothing) because they were so chronically ill

Message withdrawn

Jimjams - that was my immediate reaction to what that woman said at her child's funeral. That people do not realise that you LOVE your SN child and that is why you do what you do, and that is why you cope. It's not because you have no other choice in practical terms, it is because you have no other choice in your heart. I didn't get that before I had dd.

And to be a bit controversial...

actually, yes it does piss me off when people moan about certain things or worry that their child is a bit late doing something, when it is bloody obvious that the child WILL do it so WTF does it matter if they are a few months late (as the mother of a 3 year old who cannot stand unsupported and cannot talk, and may never do either, I feel justified in feeling that).

But that is why I don't stray out of SN very much. Because I realise it is my issue not theirs and who knows if my life had been different I may very well worry about those things too. So, no I don't think people are being pathetic for worrying - I just don't want to have to deal with it personally.

OMG HITC- you are sooooo right. That is the issue isn't it!

I think its different on mnet compared to RL though- as people are entirely justified in starting whatever thread they like on here, and we don't have to leave SN. But in RL grrrrrr. Had to listen to half an hour of "poor certain someone" yesterday who had had such a terrible time on holiday because her baby was with her, and oh its so tiring to go on holiday with a baby. How bloody nice to be able to get on a plane, and go on holiday as a family! (the person telling me knows we can't do those things). THAT's what annoys me- people in RL who should understand the situation and are completely insensitive. But I think that comes down to them not realising that you LOVE your child as much as they love theirs, and therefore you are emotionally affected by comments and things you can't do etc. They seem to think that our children don't really matter as much, and somehow it therefore doesn't really matter.

Once again I'm back to the programme about the family with 3 children- 2 severely autistic sons and an NT dd moving to northern Scotland. A lot of people afterwards talked about the effect on the NT daughter, and how it was unfair on her, kind of missing the point that her brothers were just as important as her to the family. And that she was far more able to be adaptable than her brothers. She was not less important than her brothers, but she certainly wasn't more. I think a lot of people with only NT children don't realise that.

ghosty, such a sad story

Definitely different when people make direct comments/moan in RL than someone posting on MN - not so easy to avoid them often! And yes, the insensitivity of some people never fails to amaze me.

I wonder if it is also partly because even when people know your situation they can have an amazing capacity to 'forget' it or minimise it in their heads. Because that way they don't have to deal with it. It's my only explanation for why someone thinks it could possibly be acceptable to say some of the things they do.

Message withdrawn

Jimjams, I watched that programme and actually felt most sorry for the youngest boy. He appeared to be happy and settled at his special school but still got uprooted. I seem to remember that the move was mainly for the sake of the eldest boy as they were worried that he would soon have to go to a residential school due to his violent outbursts. You are right that the little girl was more adaptable but maybe the boy wasn't? Can't blame them for trying anything to keep their family together though. They made a tough choice and I would love to know how it all worked out for them.

Today I benefited from reading some of the SN threads that come up in active convos. Was in the doc's surgery, reading ds a story while he sat in the buggy and waited. Older boy - looked about 8? - came in and sat opposite. The books were next to my seat so I couldn't help seeing his mother choose a book that would usually appeal to toddlers and read it aloud to him.

When he came running over for another book and whacked ds on the head I chose to assume he might have SN, rather than being p'd off and cross that an older boy had carelessly hit my toddler, and his (much) older brother (who was looking after him by then) hadn't intervened.

Not intending this to be smug in any way, just an example of how you've all educated me to have a little bit more patience.

One of the lessons I have learned over the years is that you must be able to let other people have their problems. They might not seem as bad in comparison but remember its them to a large extent who have a normal set up and because our difficulties are so stressful and traumatic we lose our sense of proportion. If we are to be able to have friends other than our SN friends we have got to have something else to discuss. I have four children, one with dyspraxia one with middle spectrum autism and two so called 'normal children in the middle. Strangely to some It is the normal ones I feelsorry for. They have both been severely mentally scarred by our family difficulties-- one left home at 16 and the other had a complete nervous breakdown last year and has been so ill her education is over.They did not ask to be born into such a dysfunctional situation have parents who are stressed off their heads or be embarrassed to bring friends home. My SN children are only half of my children and I have to make a special effort to make sure my other kids have the good side of me..ie going out with them alone to cinema etcYou should never think your problems are not important or pathetic remember within the SN community there are children more badly affected than others and it is often easy to feel guilty if your child has high functioning autism and somebody elses child has severe autism or severe cerebal palsy.It is tough for us all and people without SN children have terrible problems with other things. Be supportive of one another thats what I say!

I dont. My life is my life, and whatever I may be going thru doesn't lessen what anyone else is going thru. There are always people in better or worse situations than yourself, doesn't mean a thing. Still your life and your sh*t you're dealing with, like everyone else!!

Grrr, I just sat here for about 20 minutes trying to put into words the way the SN bords make me feel, and I'd done a really good job too as I'm usually really bad at that.

Pressed some wierd button by accident and it deleted the whole page!

I was saying how I am always in awe for the daily struggles that I read (lurk) on the SN boards. Now reading that that most of you don't think that everyone elses problems are "pathetic" makes me even more awe struck! Sometimes I think "Oh...come on...get a grip" at the stuff people worry about on here.
The SN boards are full of really big problems that you have to tackle very single day.

Misdee, this is for you too.

I'll just leave it with saying how wonderful Ghosty's post about jimjams is, I'm sure alot of people felt/sensed that on your posts JJ so to read it is actually true is really really lovely.

can't believe I killed this one........sorry.