Being called a victim

[bobalinga]

Anyone ever had 'friends' call you this because, heavens forbid, you are not 100% chirpy and happy all the time and occasionally mention that having a brain damaged child is a bit of a bummer?
Not sure what is a good comeback....

I agree its true.
The tuts I get when ds is having a meltdown are ridiculous but my swearing's getting better.

If only people could be more sympathetic and non-judgemental. I have developed a thicker skin than before though. Supermarkets are a bit of a flashpoint and i have managed to zone out at least a hundred staring faces on a busy Saturday! But I do tend to try and do my shopping during the week now instead.

My life has changed beyond belief since having my ds2. I am shocked at how hard it can be and yet people can still be so mean. Mind you, i really feel that my ds2 now helps me sort the wheat from the chaf (is that how its spelt?) Before, people who I would have taken at face value I now see their true colours from the way they respond to him or comments they make. I feel so grateful to him for this as I don't want people like this in my life.

I am going to wade on in here...(hope I don't regret it).

I am a mum of a NT child (although I don't actually know what it is - I presume it means not SN, but don't know what NT stands for!)

In one sense I CAN'T understand what your lives are like, in a similar way that someone without children cannot truly understand what it is like to have a child.

But what I love about the SN board, is that I get a tiny insight into what your lives are like, by what you post.

Some people are rude and insensitive, or just ignorant. But some of us, who still will never understand (I do understand that), would love to understand.

I don't feel sorry for you because you have children with special needs. I feel sorry for you because knowing how exhausted I feel at times with my 17 month old NT child, I can't imagine the exhaustion you feel.

That's not pitying you, but imagining the emotional strain of caring 24/7 without a break.

Perhaps you could educate people like me? Not saying that you have to like us, or accept us, but please don't dismiss me or people like me as irritants to be avoided.

Hope today has been a good day.

lou, thanks for your courage to post! I can't speak for everyone, but I tend not to get offended with people who take an interest in our lives and chidren, even if sometimes someone "puts a foot in it", because the sentiment is honest and true.

The thing that I think people don't understand is that whatever the child's problems are, they are still children and can be treated just the same.

Also, what many people don't "get" is that, when I complain about the workload and tiredness, I will get a comment such as "yes, all children go through that phase". Yes, all children go through phases, such as sleepless nights, wet clothes during potty training, messy clothes with feeding oneself etc etc. But these phases end. With a sn child, THEY NEVER END. It's endless hard work.

Finally, for me, it's the worry over the future. Generally for a nt child, the future is generally bright. But for us, the sn child growing up is so worrying. They will be so vulnerable, and parents will not always be there.

Mamazon, why did MN slate the thread about everyone needing to have a SN child for a day? What was the general viewpoint?

Have to agree with twoisplenty, speaking for myself I don't mind 'educating' people. If they ask what's wrong with ds then I'll say. It's the attitudes of 'Can't control her child, that child needs a good smacking etc' (just a few of the ones I've had.)
We don't expect other to understand exactly what we go through but would like them not to dismiss what we are feeling so trivally.

Oh and NT means neurologically(sp?) typical. A far more acceptable term than 'normal'

My problem is that I do tend to stare at children and adults with sn who are walking badly or using a wheelchair. And they must think I am the usual staring rude person. But I'm not! I am either in awe of their walking skill or wondering if my ds could have a wheelchair like theirs!!!

When people stare at my ds in his wheelchair, then I don't feel any anger - I think they are interested. Much better for my nerves!

on a related theme, and I don't think this is just my paranoia , do you find people think you just make up or exaggerate your child's symptoms/illnesses as an attention seeking behaviour for yourself? or is that just me that it happens to?? tbh the worst ones are usually family (but not the closest ones). it used to really upset me but now I just want to slap them - moved from sad to rage in one easy step! but my serious worry is that one day I'll find on my notes 'munchausens by proxy??'

Lou, what a lovely post, the majority of peoples attitude to sn is as healthy as yours but sadly its those that feel compelled to express their insensitive opinions that tend to stick in your memory.
I once heard a parent in ds1 (nt) playground say that the amount of sn children at the school was a real PITA as the parents thought they were entitled to the world & were out for what they could get. DS2 (sn) was a baby at the time & his future was very uncertain (still is in many ways)I was not confident enough in my new world at that time to tell her as it really is.
So if ever I rant on here moaning about the insensitivities of some I'm sorry it isn't meant to tar everyone with the same brush its just sometimes it feels that there is a shortage of understanding out there.

Hi Lou, being on this board and trying to understand is great. I think the thing a lot of NT parents don't get is the fear of the future. NT kids will grown up, become independant and leave home. The workload gets easier and you know, as much as you love your kids, they are going to be off your hands one day. With SN kids they may never leave home. I will be feeding puree into C's mouth and changing her nappy for decades. I worry all the time about what will happen to her when I die. Who will see her as a person rather than a disability?
Morroco - yeah I've had that from friends and family. C has severe spastic quad cerebral palsy and can't move anything from the neck down, She can't sit, roll, feed herself, play with toys etc etc. Yet I'm told that 'she will get better'. When trying to explain that CP doesn't improve I'm told I'm being negative. People don't want to hear the truth. I don't know if its because they can't understand or they don't want too. Really understanding might prod them into helping a bit and they don't want to put themselves out (especially as CP is forever and once they start helping you might expect it forever!)
One day I'd like to ask someone why they think I'm exagerating or being negative when I am just telling the facts as they are.

Mymatemax - people resent all that money we get from the Govt and the wondrous blue badge (I have had people say how lucky I am...!)
They must think we look haggard and ungroomed to hide our fabulous wealth

Thank you all for not blowing me out of the water!

I can only imagine how it feels to be the parent of a SN child, because surely when you say you love them, being SN is part of what makes them them. But at the same time, there must be a part that always wonders what they would be like if they weren't affected by their SN.

Well, my NT baby is throwing huge wobblies today - the joy of being 'typical' huh?

Agree bob- dh had a huge row with his parents once because they completely failed to understand that ds1 will never be off our hands. They made a comment about how our time to sit on beaches would come and dh went off the deep end!

I was told I was being negative as well bob- but I find that the people who are not tuned into reality make me more negative as I try to correct their dreamworld. I've learned to not bother, and just escape!

I've been pondering something similar recenty. Fairly regularly threads crop up on mumsnet where the friend of a Mum with a child with SN can't really cope with the diability anymore - the mumsent advice is to just meet the mum with the SN child without children, but I was thinking. I very rarely see friend with ds1 in tow, because their houses aren't safe for him, it's too disruptive, but I only had people left in my life who can cope with being around him- even though they're not put to the test very often The first to go were the ones who found his disability too embarrassing to mention, I tried for longer with the ones who just look uncomfortable but tbh they've gone as well- even in some cases when their children could have played well with ds2 or ds3. I just find it too hard work being around people who don't get it/can't cope with it at all and my precious childfree time is generally for me, to give myself time, and do my own thing, not work on friendships that can't comprehend the biggest thing that has ever happened to us (in terms of affecting our life).

"At the same time, there must be a part that always wonders what they would be like if they weren't affected by their SN." Oh yes, definitely. But every time I think about what he should have been like, I find it so upsetting. Now I just push it to the back of my mind, it's pointless going there. My ds is who he is, and that's that. I find it especially painful because he should have been fine, they got it badly wrong at the birth. But as I say, there's no point doing the "what if" bit.

One thing that has happened since having a sn child, is that I feel enlightened. I never knew anything about disability or children with sn before having one. I find that the children at my ds special school have something "extra" to nt children, and I can't describe what it is, but they do work extremely hard and are just so giving.

How old is your ds twoisplenty? I used to wonder all the time, but I don't really anymore. NT 8 year olds are so poles apart (but I do also kind of avoid them, so I guess I'm avoiding thinking about it rather than coming to terms with it).

I know what you mean twoisplenty. Without making out SN is wondrous, I have learnt so much (I always used to hate poelple who said that!) I will always wish C hadn't been brain damaged at birth and will grieve for what should have been but I'd never have met the people I have met, the children I have met. There have been sad moments too - last year I went to 2 funerals, both 4 years old. Never happened in the life I had with my other 3!
I look back now and wonder when I was raising my other 3 as toddlers then school, where were all the disabled kids? I don't recall ever meetng any or seeing any?
I have found my thoughts on what is important in life have changed hugely and also my thoughts on what makes us human.

I agree twoisplenty and bobalinga, having a child with sn has opened my eyes to so many new experiences and I think I appreciate the small things so much more than before and I have met some really good, committed people along the way.

Unfortunately I am having an absolute nightmare with my ds mainstream school. He is on the waiting list to go somewhere else because it has been so awful. And on Friday I got a 'present' from the senco, a report of our annual review saying that they no longer think the school is appropriate for my ds because of his condition. I wouldn't mind but we sat in the meeting and she didn't raise this at all. We left on a postive note with his lsa saying how well he is doing. Her report of the meeting was not a true reflection of what happened at all. I just feel so insulted, she was so negative about him and I think he is a great kid, most people who meet him fall for him because he is so loving and I think the school is privelaged to have him there. Most of his classmates would probably never have met someone like him and learnt about differences.
The senco has done this before, put an important document in his bookbag on a Friday so I have to wait until next week until I can do anything about it. This time she came up trumps with it being bank holiday weekend! Thanks senco!
I really feel that nt children can benefit so much from being around children with sn who have so much more to offer than meets the eye. Alas once again, its not the kids who are at fault in this case, they love my ds, its the adults who run the school.