SN and lonliness

[sparky159]

ive noticed that when ive read anything on SN
eg-leaflets and info ect-
ive never seen anything written about the lonliness that can come with being a parent with a child with SN.
it seems to be something thats not really talked about.
do you get lonely?-i do.

Hi Sparky,
No, it's never mentioned anywhere I've looked either - only on here sometimes!

I guess that is why SN groups are so important although haven't been to one myself as no-one else around here appears to have kids with SN

As a Mum of a pre-school child it makes going to NT groups all the more difficult as I can't empathise with any of their (trivial) parenting issues and they don't like to ask about DD (physical problems)!

I do.

It has become a priority for me to learn to drive so I can get out more with my two DCs. DH works long unsociable hours so I get very lonely. Having a child with SN can make finding a babysitter hard too, inviting friends over here is often the only way I socialise. Even then Im sure they a
re sick of hearing me rant on about DCs. Lack of adult conversation is another factor.

How do you cope?....Wine? TV? MN?

Hi there,yes I was extremely lonely in the early years.Some due to going to NT groups and feeling isolated.It`s a fact that no-one understands unless they are a parent of a NT child themselves.

I do,
It feels like i'm the only one (in my area) with autistic daughters, i have met a couple parents through dd2's nursery but now dd2 has finished nursery and is starting ms school i feel lost again. There are no SN groups near by which is a real shame. We don't go out because we can't get a baby sitter. I have a couple friends but rarely see them.

MN helps me a lot.

Yeah I think we can all sympathise. I find myself caught between the two though. On the one hand, it's hard to keep up with NT mum friends for all the obvious reasons, but on the other hand, you're aware that the SN mum friends I have all have their own worries. I see and talk to the SN mums more but in a crisis, we're no good to each other (apart from shoulder to cry on)the way other friends could be - do you see what I mean?

THough it's only a small thing, I've found MN a godsend just to reassure myself that there are so many people out there who are experiencing the exact same stuff I am.

It's the parties that break my heart. I would love to be included in the party cirle that everyone else seems to do. I would spend a FORTUNE on any present for any child's party, simply because ds1 hasn't been to one since he was 4. I would stay, I would help, I would play with children and wipe noses and sort out fights, I would be SO grateful - but to be honest, Ds1 is in year 3 now and party season is just about over. Not many children have an 8th birthday party.

And this despite me throwing one for Ds1 every year.

Yes, feel like this also, sometimes the stress involved in joining in puts me off going places especially as dp works shifts so he's not always about. Sometimes I also feel that if I share my worries (particularly about the future) it makes people uncomfortable.

My ds2 (hfa/adhd) is 9 now so we are pretty much out of the party season too but it was hard at times when his brother (10) and sister (7) were invited to parties from kids in their classes. However, the stage we are at now is sleep-overs and ds2 is not always on the invite list with his brother and that's hard. I rationalise it by saying to myself that they are not joined at the hip and will have separate interests etc but it's sad because ds2 doesnt really have friends of his own.

yeah, I've only got the one child, who has SN, so I feel part of neither NT world, or SN world (the one time I went to local SN group they were a bit erm patronising, felt that DS "only" had a language problem, so didn't dare go back without an ASD diagnosis!) I've got a few lovely friends made through the internet with kids a similar age with ASD type issues, but they live a couple of hours away by public transport.....

colditz

Do none of the children who come to your ds1's parties ever invite him to theirs then?

It's incredibly isolating and lonely, you never know what other peoples reactions will be to your child. My daughter has had a comment or two regarding gorgeous DGS with cerebral palsy.
We were in sainsbury cafe today and DGS happily turning pages of book (he doesn't look very disabled. This lovely lady smiled and spoke to him and got one of his drop dead gorgeous smiles. She wasn't aware he had problems with movement. Yet I was thinking 'would she have interacted if she'd known he was disabled'? Is it me being hypersensitive - I have a very soft shell, and my DD's is even softer! Some people seem to think a disability is catching!

yep. lonely and isolating.
and really hard when you need someone to look after your child in an emergency and you feel there is no-one you can ask to help because he's such a handful.

Sparky, you have a good point... perhaps we should start a campaign to get this recognised more.

some friends with two NT kids recently said they'd found the whole experience of being parents in our culture very isolating, and that's without the SN to cope with on top.

I didn't feel I fitted with the NCT mummies who meet for coffee, even before ds problems became apparent. Have felt so isolated have wept, other mums have said 'join this group or that group' but I was having to follow him round as he bit, (and is still rough) so NT groups not safe or welcoming. The SN groups are a bit tough sometimes too, there is one where the mums have known eachother for years and didn't speak to me at all, but... the good news is via groups have found a couple of friends whoes (SN) kids ds has really taken too, so he has a couple of little friends . And we mums get on well too, so am finally after 4 years feeling like I have people to see, and stuff I can do with ds. Sorry that was a bit long, but this thread really resonated for me

i appologise for not coming back sooner
i was having a horrible few days and had to walk away a bit-sorry.

thankyou for ansering my post.

yep-Lauree i think this should be reconised more and i think youve brought up a very good point in this aswell-
emergencys and children with sn.

also theres things like-if youre child goes to school by transport[which im grateful for]
you then dont get to meet other parents.

for me-i found it a bit easier when my daughter was pre school as i went to a wonderful sn parent and toddler group-the isolation has increased when she s got older.

i take her to everything i possibly can so s shes not isolated but although this is good for her-it doesnt really give me a chance to get to know other parents as w ere too busy keeping a eye on our children.

and theres the other things isnt there-like-
a lot of children play out in the street-and through this they get to know each other and the parents know each other-a lot of our children cant do this.
actually-the list goes on and on.

i dont know what the answer is to all this really.

Colditz-[party]

I am so lonely and isolated, feel guilty for my ds's medical issues, having to fight for everything all the time, and do it by myself. There is some comfort in knowing others here are feeling the same.

Same here ds slips through gaps we been made uncomforttable in Sn groups as one been going dc have mostly sever autiusm or sld yet ds can't mange mainstream without me either

We had day out with friends today and the gap between 2 boys was very obvious though for first time ds could join in with powerchair but still watching o. The slide ds went up using knees a d arms though am aware lots on here would love that there dc could do that even but the other child just shot up

I'm single parent to so no one at home talk to either thank feck for mumsnet

Me too.

I find it hard to access sn support groups (other nt children at home because I home educate plus ds now has full time aba) - though the only local group is for teenagers with AS so not really relevant. HE puts people's backs up too (I'm either failing my ds for the sake of my own ego (what no statement!) or judging their choices - really I'm just trying to muddle through my life) and I don't have any experience of school issues and statements etc which means I often don't have much to add to conversation. Combine HE with a few very aggressive responses I've had when I mention ABA & I've learnt to keep my mouth shut.

I am massively defensive about ds (I know this & I realise I can be a PITA) - I can't stand any perceived slight (the offers of play dates out of pity so competitive mums can pat themselves on the back that they are doing everything right & in reward they have perfect children while at the same time signalling their magnanimity to the outside world - look we're so right on that we don't mind our lovely dc playing with the 'special' kid). I find it desperately hard to do anything that might mean comparing ds to NT children his age (thankfully dh & the tutors are made of sterner stuff so ds doesn't miss out). And then there's the issue that I don't feel confident to take all three children out on my own any more.

I can go for weeks at a time where the only people I see/speak to are ds' therapists.

Sorry to hijack but just wanted to say something. I run music sessions for kids and I very rarely have any SN kids. Having talked to friends with SN kids and been on Mumsnet, I am now trialling exclusive SN music sessions and also physio/music.

Would you be offended if your HV or someone recommended it or asked you if you'd like to go. I wasa bit shocked by one HV who after hearing all my session times and prices for my usual sessions, asked how much the SN sessions would be. It hadn't occurred to me that they could be/should be more expensive?! WHY? She was a bit taken aback I think when I told her they would be the same price.

I never know if it's OK to say to mums that they welcome to come along to any session but what's the fine line between accommodating their child and having the other (maybe not understanding) mums tutting and leaving. Would you rather I said (please be honest as it will help) that this is and he has SN (explain somethinG) or would you rather I mentioned it when you weren't there and just winged it?

Any replies please would be great, I don't want to say/do the wrong thing as I can see how hard it is for some of the mums on here.

I would love it if mine mentioned it not that she
.As for the price think people so used to paying more when Sn is seen swear adds extra 0 even if nothing is any differnt

as fir the sessions I would like to think come to any ,but do understand that this is your business and that not all nt mums be happy about having Sn dc in the group and could affect your income

think you would have to consider child by child how it would affect nt group and chances of losing your income .Part of me hates saying that but this is your livelyhood were talking about so taking of my hat that says if you don't like ds being there sod of hat that I wear in most situations

No help am I lol

And I thought it was just me...

In some ways I've been really lucky as most people have been very accepting of DD who has Down's, but as I live in a fairly isolated tiny village it's a real effort getting her in the car to go visit people some days, especially as she's teething at the moment and we can't give her anything to ease the pain due to her heart condition...

If you factor in all the additional health care appointments / therapists etc. you do find that you're not able to make a fair amount of the NCT / new mum get togethers which does get incredibly isolating.

I do also find that whilst the mums of the 'normal' babies are trying really hard to treat dd the same as any other child they are naturally a little awkward (even embarrased) with the situation which makes it harder to make any real friendships past the superfical polite baby talk.

In some ways it's my own fault, i was a real workaholic before DD came along so didn't mind living in such a remote place / not really knowing anyone in the area as I was never here, whereas now when I'm at home on my own all day it can be a real struggle.

What's really helped me is forcing myself to go out for a walk every day and to go to at least one get together a week (even if dd is screaming throughout) just to see other people. Talking to dh has also helped; I was really embarrased to admit how lonely I was at first as I thought it sounded a bit pathetic or that maybe I didn't love dd (which of course I do), but he's been great and is making a real effort to help me through the rough patches

sticky - re:HV point - I often felt frustrated at how little HV type people knew about local groups etc, in my view the more information readily available out there the better!

in terms of dealing with parents of NT kids - I think it's one you would have to play by ear - as it depends so much on the individuals involved. do the mums stay at the sessions? if

proudmum - please don't blame yourself - becoming an SAHM can be surprisingly isolating for many (why do you think forums like MN are so popular!).

forgot to add

Stickj - absolutely wouldn't be offended if you advertised that SN were welcome in your classes. It's how I chose dd swim classes, as it saves having to ring up and ask in advance if they are suitable; although that could be just me being over protective checking in advance so that dd doesn't get a negative reaction when we turn up.