why do I feel so angry?

[manc1]

My daughter was born last march and has cp, I joined an nct group for support as I have no family and my husband works long hours. The group are organising a joint birthday party and cannot stop emailing about how excited etc they are. None of their children have special needs and are constantly talking about crawling and walking and talking, I don't want to get involved with this party at all but also don't want to lose what support I have, I feel selfish coz I'm the only one not going but don't they understand how hard it is for me having the only child who's not even sitting up, my daughter had a fit on Xmas Eve and was hospitalised until the day after boxing day and when I mentioned it I got a "what a shame" email back from a few of them but secretly I feel they are just glad it's not there child who was there. On a plus my daughter is an absolute joy to be around and has not given me any hassle at all, I want to part company with this group but am frightened to have no friends and I do get on well with all of them. this whole situation just seems to make me angry and whenever we meet I try to make light of my daughters situation as I don't want them to think I'm full of self pity.

I now feel abit stupid having read what I just wrote, of course my daughter isn't any hassle but sometimes it gets a bit much with all the hospital appointments and doing almost everything myself. I think I'm just feeling sorry for myself but I just feel so angry about the whole situation.

I have a 4 year old son with CP. If you ever want to talk, I'm here. I'm presuming you live in Manchester with a name like manc1. If so, I come over to the centre of Manchester every few weeks. We could meet up if you like.

Our son is six and has CP. In his early years we went to a Friday morning group for all children with special needs in the childrens centre at the local hospital. This was fantastic support and more importantly, somewhere where you didn't feel the odd one out and so alone.

You will always get the looks of pity and people feeling sorry for you. It does get better as they grow up. It sounds like you do enjoy the group, and i'm sure they mean well in their comments. Its so hard when you have a disabled child, there is so much hurt inside when you are surrounded by able boddied kiddies and you just feel like screaming sometimes.

Is there anyone inparticular in the group you could share your feelings with about this?

Manc your post doesn't sound stupid at all. My ds2 is 5 & has CP, ASD etc.
I stopped going to baby groups as my ds began to lag further behind the other children & I found the obvious comparisons difficult even though the parents were mostly kind & tried to say the right things.
My HV put me in touch with a local sn pre school group which was fantastic for both me & ds2.
We also attended CP parent info session this put us in touch with other parents with newly dx'd children, over the years i've bumped in to them in various waiting rooms & car shared with one for hydro sessions.
One of the few advantages of having a child with sn is the wonderful people & good friends we have made.
If ever you want to talk just shout!

my situation is different - DS problems didn't really show up till he was 3, but I do get where you are coming from. Sometimes it feels like people are rubbing salt in the wound when they boast about their darling's achievements. I would say re:NCT etc friendship group - try not to rely too much on them, and to try and meet other people if you can - even without the added stress of your dd having a health problem, these friendships based purely on having kids the same age can be a bit fragile.

sorry you are feeling so down. dd is 12 now but I can so remeber the early dys and the feeling of being alone. in the end I spoke to my HV and she got me intouch with another mum of a child with cp. could you try this?

Manc a first year birthday party would bring me out in a cold sweat too!- I find mixing with families with nt children the same age as my sn child (now 8)particularly painful- and that has certainly got no easier with time. Mixing with mixed age families (without the comparisons that always seem to happen between newish mums and their babes) is not quite so difficult. It is important to have a supportive network around you, but it needs to add to your life not undermine it. Is there a sn parent and child group near you (ask the health visitor)? Some of the best support I get is from local mums of older/ grownup children (mostly neighbours)who notice my lovely child! I hope you find a more suitable group!

Thanks guys, I feel better already knowing that I'm not being a drama queen and lots of others feel the same. Am gonna contact my HV and see if she can put me in touch with any other parents of sn kids.
I think at the end of the day with NCT all we really have in common is that our babies were born around the same time. I have made a couple of good friends with them and maybe I should be a bit more open with them instead of putting on a brave face so that they don't feel uncomfortable.

awww NT toddler/baby groups a terrible place to be when you have a child with SN. D try and find some SN support groups as well. Or perhaps try and set up a SN coffee morning via your NCT- bet there'll be a need for it. I was going to do that locally but had too much on.

Hi manc1,

I do kinda get what you are saying. Our daughter is on the autism spectrum. Though our daughter has Aspergers she is high functioning and we don't have the struggles many parents with children on the spectrum do.

Our friends, bless them try to understand but we get the 'thats part of growing up' stock reply. Heck most of them are not even aware. With one or two exceptions we don't invite people to our house.

On the other hand listening to other parents talking about their problems I just never bother, or make a joke out of it and see if anyone catches on.

I know there is one question I recently struggled with and it was put on the back burner when it resolved itself, but I know it will reappear and I will again struggle with what the right thing will be to do.

So I feel out of place with both normal and sn support groups.

I know how you are feeling manc1. I made some good friends through NCT coffee mornings, with DS1, but since DS2's problems have become more apparent I find it really hard being round most of them. I have isolated myself - I avoided the first birthday parties, and am missing even the mums' nights out because I don't want to hear about the PFB (and now PSBs).

My "social" life, since September has revolved around appointments.

When he had his assessment they told me they would refer him to the special needs playgroup, which I have been to twice, but generally I am too tired / busy to go. It's a very quiet group though, last time I went there was only me and the two organisers.

No other advice, it is a hard time coming to terms with everything (I am still not there at all), and it seems so unfair that our parenting experiences are so different from the "norm", and that society is such that when we do reach out we are reluctant to for fear of making the other person uncomfortable....

You are not full of self-pity at all...

hiya manc1

i live very near manchester and my dd has CP albeit a mild version, she is also being asessed for ASD as well.

i totally understand what you are saying re groups, the only ones i belong to are on here and on an CP/ASD website.

i too have lost many friends due to both kids having SN, (ds has AS too).

i would love to meet up with you if you would like, im going away tomorrow but ill be back in 2 weeks, perhaps nat could meet up with us 2.

dont worry about feeling stupid about comments, you should read some of mine over the years!!!!

jen
x

hi manc, my daughter is nearly 4 and has severe CP. No sitting or rolling etc. Has fits too. And she can't talk.
We tried NT groups but I neded up feeling angry and resentful and their easy lives and perfect babies. Not their fault although none of them understood (and they can't).
And why shouldn't you have some self-pity? Its crap having a SN child. I bet they whinge on about lack of sleep or somesuch.
Now I pretty much have a social life involving just appointments, therapists, social workers and a few friends who also have SN kids.

"So I feel out of place with both normal and sn support groups."

Dgeorgea - exactly how I feel at the moment! Went to my local ASD/social communication disorders group with DS for the first time, and despite his glaringly obvious speech problems, they were all a bit [hmmmm] as to why I thought he might have ASD. (He's 3 and stuck on various waiting lists so no diagnosis).

(sorry to hijack).

I think it is hard to enjoy these groups even with an nt child, the pfb thing is hard work. A bunch of strangers in a room with little in common, but the fact they have a child of similar age... I have to say I never enjoyed them with my nt dd, though I made two very good friends, after a few years, of forcing myself to go...

Are there a couple of people at the group you like enough to maybe invite over to your house? I think it is a good idea to see if you can make friends with people who know something of what you are going through too as pps have said.

maybe still go to the nct group every other week but force yourself to go to other groups when you are not at the nct group? not all groups are the same, finding a small one where you can really get to know a few people might suit you better?

I think, like others on here, since my ds has started on the asd road I have been so hyper sensitive, he looks normal but is the odd one out in so many ways amongst his nt peers, I think I have been guilty of withdrawing from social events, if he is invited to a party I decline, just because I feel so vulnerable and get myself tied up in knots about what ifs...

It is tough isn't it. I have started to withdraw from invitations for my ASD son partly because he can't join with activities properly but probably partly because I find the comparisons hard. There isn't really much you can say when your friend who is bringing her child up bilingual says that she is worried that her DD's sentences in English are not as good as in German or vice versa !

I see the other side though because there is a boy with delayed development in my DS2's nursery class and it is not always easy to know what to say to his mother - though it has got a whole lot easier since I told her about DS1. But even if I didn't have DS1, I hope I would never have been so insensitive as to start raving on about DS2 starting to walk and talk and saying 'Oh what a worry it is trying to get the right colour of shoes!'

It sounds like the emails are sent to a group so probably they don't want to delete you but then forget that not everyone in the group is in the same situation. Groups are never easy on or offline (unless SN obviously) but maybe you could try to approach some of the more sensitive ones individually?

Totalchaos,

Sorry did see the thread early this morning but saw a comment that really p!ssed me off and was too tired to tackle it. Actually I won't tackle it because the person who made the comment needs support not another parent having a go at them.

BTW I'm fairly well clued up on ASD and the expert on how it effects my daughter. One type of post I try to stay clear from is where posters say - does this sound like ASD?

If ASD was so easy to diagnose that you could pop along to one coffee morning and be told by parents your child does or does not have ASD why would diagnosis take so long? It is BS and any support group should know this.

The other problem with armchair diagnosis is that there are a number of diagnosis which present similarly, comorbid with another issue can confuse things, even medication can have a huge effect. For instance in one school I worked in there was a young girl about 8 with one of the best smiles I've ever seen and she was very chatty. The teacher told me until the year before she had never spoken. She had autism and epilepsy. What changed was the medication for the epilepsy!

DD was ten before anyone else became concerned that there was something wrong and ASD was first mentioned. This was despite the school getting someone in to observe her interacting with her peers a couple of years before. We were told she was 'ready to interact with her peers but needed a little help to do so'. It was only as she got older and the differences were more pronounced that anyone else began suspecting anything.

Short version I think they were wrong to do this to you. It took us at least 7 years before anyone else started to take us seriously (we first became concerned when she was three) and another 30 months+ to get the diagnosis. Prediagnosis is a nightmare, especially when no one is taking you seriously.

my son has quad dystonic cp he is nearly 4, non verbal and cant do a thing for himself, im a single parent so have to deal with it on my own and know how tough it can be, my son attends a conductive education nursery which is fab as all the parents are in the same boat and theres always someone to chat too.
im also a member of a private msn support group for parents of kids with cp with members all over the world and we're always looking for new members

groups.msn.com/ChildrenWithCerebralPalsy

HI Manc1.

You are certainly not silly or alone for feeling the way you do. I couldnt bear t go to the baby massage class any longer not the first time mums group as I found that I couldnt put a brave face on any longer, why put yourself through something that hurts so much ?!

You may be right in that you dont really much much in common with these people except having children the same age, no reason why you cant keep in touch with the ones your closer too without being part of the group of thats what you want.

My son is now 2.2 and it still hurts so much when I see children of his age and even younger that are walking and talking. I even had to cut myself off from a lifelong friend as I couldnt bear the pityfu looks and comments everytime I went round there, which was a hard thing in itself as she has a son 4 months younger...!

Like everyone else has suggested try and get some links with other parents of sn children, its helped me alot.

Hello,
My son is 19 and I would have given anything to have been able to read some of these comments.We were told he would be profoundly disabled at two weeks after he had suffered a brain haemorrhage.
I would avoid NCT parents groups,I went and it caused me a lot of mental damage.The crass comments and smugness,people telling me how I should be feeling etc etc
OH AND THE MOANING ABOUT SORE NIPPLES,CLICKING HIPS AND THE LIKE.
However I could write a book about peoples tactless remarks.Do yourself a favour and avoid anyone or any event that could make you feel bad.
Also parents who tell you they know how you feel and then describe their childs sn as add or dyslexia.Believe me it is not the same as changing the soiled nappy of a bloke of nearly 20 who gave you a black eye last week.

manc - also I think for your own sanity you need some none child related activites - gym/book group/evening class - and a chance to be in non baby-obsessed world.

dgeorge - thanks very much for the reply, much appreciated.

I think it is time for me to move on.

I love hearing how my friends children are doing, what ever their age, whether they have sn or not. With my daughters ex senco I used to spend as much time discussing how her daughter was doing at university as I did discussing my daughter.

As I said I rarely ask for advice for problems we face with dd because those who don't deal with sn children regularly don't get it, and those with sn children tend to face much bigger issues then we do. Funny thing I was seriously considering doing so here but glad I haven't done now.

I do share in her successes, mainly because as parents of sn children we do find it difficult. Also in the hope that those with similar children as my daughter will gain some hope.

I get as much satisfaction of hearing a friends sports mad child scoring a winning goal as I do hearing a child with add going a whole week without getting into trouble, or an older child trying something new to eat, or going the night without soiling themselves. Each child is an individual and in each of the examples above is a child moving forward to meeting their individual potential. I don't play compare children, they are not clones or robots they are individuals.

As parents of sn children we each have shared experiences, anxieties, fears etc. As a group we are potentially more susceptible to alchohol abuse, mental illness, divorce. For many social exclusion is not just a sociological term but a living reality.

Most parents will spend far more time worrying about their childrens health, fighting for what they need and worrying about their futures then we do for ourselves. Often to the parents long term detriment.

Desperate remarks concerning ASD being a learning difficulty and not a life time disability I can understand and live with. A parent belittling and dismissing other parents of sn children because their special needs are ONLY x, y or z is too much for me.

Yeah your right, your so locked up in your own self pity I don't understand.

I attended A&E when my daughter was 3 because she had a melt down and in the twenty minutes I carried her home she scratched at my face and kicked the hell out my hips. I have stood between an autistic child and his intended victim and took a beating until trained staff could restrain them. I have had chairs thrown at me, been spat on, kicked, thumped, had my hair pulled and been sworn at.

I have stood in a playground and listened to parents complain about their childs behaviour and how much of a struggle they are, and then turn round and blame the school, teachers, ta's, other kids etc expecting a teacher with 30 children to be able to do what they as a parent cannot do.

I have resigned as parent/sen governor because it was the only way I could point out how the HT was undermining the SENCO's efforts to meet the needs of sn children and for it to be taken seriously. Where accessibility to IT was purchasing large mice which were then removed because children were using them and they may get damaged, where the wall railing was painted the same colour as the wall, despite having partially sighted students and the HT couldn't see the problem.

But hey, my daughter is practically 'normal' so what do I know? So as I said it is time for me to move on.

Big hugs to you all and best wishes for the challenges you all face.

What on earth are you talking about? I think you've seriously misread something somewhere along the line.

OK I've re-read and think i understand where you're upset. Although I think you have misinterpreted. ADD & dyslexia are very different from a 20 year old who needs nappies changing and has challenging behaviours to boot. Fors starters having a 20 year old who needs continual care is far more isolating. The 20 year old dyslexic is likely to be off getting married soon, does not need babysitting if the parent wants to go out shopping or out for a drink at night. To suggest the level of disruption and stress that they cause to a parents life is the same is insensitive.

I have a child who is profoundly disabled, who will require full time lifelong care, who will probably never talk etc. I have a friend who lost a child. We have found that we have plenty in common (in dealing with a sense of isolation, in dealing with other people's trivia yada yada) but whilst I can say 'look I understand why that upsets you' I think if I for one moment suggested that my loss was as big as her loss, or that my pain was a great as hers or that what I had to deal with was a great as hers then honestly I think I would be being incredibly insensitive.

I think you've completely misunderstood the comments about ASD being a learning difficulty. The conversation there was about professionals writing off children on the basis of dx. In fact that happens with ASD as well. if your child is non-verbal for example you will struggle to access meaningful SALT - that's because the children are seen as incapable of learning. (I was told that by a SALT-'there's no point giving your child SALT as rthey don't understand anything anyway'. The point in that conversation was that its not that the children are incapable of learning cognitively- it's that they need an entirely different approach in order to learn- usually because of some massive sensory processing difference- my comments about that were that in the case of severe autism there often are movement and initiation difficulties and sensory processing difficulties that can mean that the sort of problems a severely autistic non-verbal child faces in learning are similar to those of child with CP. (And therefore perhaps given the right therapies both children will be capable of learning something- rather than just being written off by the pros). The conversation was about basic academic learning- NOT the social difficulties that are particularly problematic to the HF end of the spectrum. That's not to downgrade their importance or impact for the person who has to deal with them- they just weren't relevant to the conversation. It wasn't what the conversation was about.

You may have been pissed off elewhere about my comment about the NAS having annoyed a lot of parents of lower functioning children recently. I'm basing that on the letters page and the outcry over the 'think differently about autism' campaign. I'm not reporting how I feel- I'm describing what I see. I help run a support group for autism and I think making it an effective support group for the entire spectrum is difficult because the needs are so different. Parents of HF children don't want to hear about nappies in teenagers, parents of low communicating aren't that interested in GCSE's and computer wizardry. My view is that the best way is to get a diverse group, run a few talks, but have open sessions where people have a chance to break into smaller groups and find those people they click with. I think the best support comes from finding someone you can talk to everyday if needed- ie from making friends. It\s not about one group being worthy and one not- it's about meeting different needs.

dgeorgea - I am sorry you feel so incensed, and a little out of place. I'm sure though from the time you have spent reading and posting on this board, you can see that there is plenty of constructive and civilised advice regarding the higher functioning end of the spectrum. I do broadly agree with what Yurt says - and I am quite prepared for someone with a severely disabled child to think "why is TotalChaos getting so wound up, her child is mobile and can communicate to a degree".

Btw the posts regarding learning disability etc - the poster who made them has a teenager son with Aspergers, so I really don't think she would mean to belittle the effect of ASD.