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Coping With Special Needs Stress! Sorry- long moan

84 replies

JAKBROWN · 10/10/2004 11:08

I'm new to Mumsnet but having read through some of the conversations on the special needs board it seems there is a really great group of experienced mums here. I've got a little girl who's nearly 4 with SN and a little boy and I feel as if I'm going completely mad at the moment. For the year after diagnosis, I seemed to cope well. So busy getting things in place for dd who is now doing home therapy I didn't have time to get 'depressed'. But recently I find myself feeling down (which isn't very me- usually annoyingly upbeat!). Just feels like everything is too much. Feel as if I can't do enough for my daughter, then stress of making sure my son gets enough attention, fretting about it all all the time. House if full of people constantly- specialist nurse, therapists etc. House a wreck- haven't even changed the lampshades since we moved in as been so busy drowing in special needs stuff. Husband at work all the time- career going really well and feel as if he is generally disengaged from family and SN daughter. Also feel irrationally angry at parents without SN kids who 'complain' about things like their child not being as advanced as another etc etc. Am turning in to a misery. Is this normal? Will I come out the other side?!!!!! Sorry to moan on...

OP posts:
luckymum · 10/10/2004 11:27

Jak - welcome to mumsnet - you'll get loads of help here. FWIW I think you're completely normal!! It sounds like you have a lot on your plate with your dd and it gets to all of us at some point. For me personally it was at the point where everything dd needed was in place and suddenly this black cloud hit me - I think my autopilot just packed in - went to the GP for ds2's jabs and came out a jibbering wreck.

You sound like you need some 'me' time and its pretty hard to come by isn't it? Do you get the chance to get away at all? Even just for a couple of hours? How about family, are they close by?

JAKBROWN · 10/10/2004 11:30

Thanks! I do have some time to myself as 'work' on Wednesdays and try to go to yoga once a week. But recently even when having 'me' time, don't seem to enjoy it. I think you're right, think as things are sort of 'sorted out' have fallen apart, ironically. Felt much better when I was 'fighting' for everything for DD! Got fantastic mum who comes and stays so shouldn't be moaning.

OP posts:
Jimjams · 10/10/2004 11:34

Do you have friends with children with SN? I have very few real life friends (except some that live far away so I speak to by phone mainly) who have completely "normal" children. In fact I have one such friend - I've known her since we were 18 months and she is very very very understanding. I do have a few people that I kind of pass the time of day with iykwim- but they're not "friends" as such. This has been mainly my choice- we moved down here as ds1 was going through diagnosis and I found I couldn't really cope with rooms full of parents of NT children at the time- so I didn't bother!

However I do have a couple of very good friends with children with SN. I talk to one of them daily- and we see each other a lot. It means that we get everything - all the shit- out of our systems as soon as it happens. Crappy letter from SS on Friday- I rang her and moaned (and cme on here and moaned ) - getting stressed about statement reveiw coming out- again rang her about it- she overheard a snotty comment in the playground about her dd- and rang me. Without that contact with people in the same situation I think I would feel very very isolated. Are there any local groups you can join? Come on here and moan anyway- we all go through it- and I think complaining about it to people who understand because they are living it does help. If you find NT parents too difficult to deal with at the moment then avoid them! I'm pregnant with baby number 3 at the moment and have decided to join the NCT to try and mix a bit more with normality but there's no way I could have done that when ds2 was a baby- (he was born just as ds1 was dxed). I still find that when I go to these things if I meet someone who has anothe rchild with SN we tend to hit it off!

The husband thing is harder. Could you leave him with the children occasionally to give him a better idea? Or could he do some training with you. I insisted that dh did the 2 day PECS workshop with me (usually I do these things alone) and I think he really benefitted. made it much easier to set everything up as well- even though I did all the practical side of things- I could asl his opinion and he could say something sensible.

luckymum · 10/10/2004 12:47

Glad you've got some support - I wouldn't be sane without my mum . But it doesn't mean you can't get fed up. Does your dh know how you're feeling? Have you had a chat with your GP at all? The not enjoying things sounds like you might be depressed - I know pills aren't the answer to everything - I never took the ones mine gave me - but its worth thinking about. And a visit to the GP might make dh take a bit more notice of what's going on. And jimjams is right, if you need to moaon there's no better place than here.......

lou33 · 10/10/2004 13:00

Hello Jak and welcome to mn .

The feelings you describe, imo are v v familiar and completely typical of parents with sn children.

I find myself swinging between coping and not, drowning and swimming. I think it comes in waves. I know exactly what you mean about the amount of therapists, appointments, paperwork, time for other children etc, and the house falling into a state fit to be condemned, as I am sure everyone who posts a reply to you does. So you are not alone!

Time out of the house on your own is always a good thing to try and achieve. Do you have respite care at all? Or any support group set up to enable you to do some things without lugging a child or two along?

Davros · 10/10/2004 13:06

I think its quite typical after that first year of activity to go through a low patch, I know I did. I think you need to work out what "me" time means for you and do what it is you enjoy and not what other people expect you to. If I had a £1 for every person that's said to me, join a gym, go to aromatherapy etc I'd be rich, and these ideas are just more appointments to me and more stress (also not my cup of tea ). I don't have any family support (they're more like a drain) but DH is fantastic and my sister is great to chat to although she lives a little way away. I agree that finding local groups of SN parents would really help, out of each group you join or come into contact with there'll always be one you can become proper friends with, it took me a year and a half before meeting many other parents of ASD kids and then a couple more years before any turned into real friends and now I'm always being told that I know everyone..... Try to find something you enjoy that isn't a lot of effort, I read Heat, drink tea and watch old films now and then . Also though, accept that how you feel is normal and, if you think seeing someone would help, then do it. I saw a counsellor via my GP and I'm pleased I did, it didn't help me much as by the time I saw her I was a lot better, but I'm pleased I wasn't too resistant to do it.

JAKBROWN · 10/10/2004 18:33

AAAHHH! Just got back from toddler party. Manic disco, lights and 50 3-year-olds running round on Haribo. Took SN dd and ds and dh! Dd did really well and actually jigged to the music which made me very happy. Thanks for all your support. Yes, I do think I'll go and see the GP. Maybe am properly depressed. So hard keeping it all together! (people who don't know me very well think I'm very together about it all. Little do they know). I've kind of avoided the support group thing as not felt ready but maybe this is a sign that I am. And I know that dh feels really out of touch with dd- he said today that he needs to learn how to communicate with her and what to do when out in public. We are working on PECS and going on a workshop together is a TOP idea. It's actually helped just admitting that I'm feeling like this to you lot. I have found that I haven't really got any 'normal' mum friends- they all have kids with SN. Be good to meet new people. HEAT and tea sounds like very good therapy. Thanks so much for all your lovely texts!

OP posts:
onlyjoking9329 · 10/10/2004 20:07

i think what you describe is pretty much par for the course, someone once said it was like someone dying and whilst you are busy arranging everything and people are around you offering support you kinda muddle throu, if i am in battle mode, which i often am with my three then i cope o.k, i just feel lost if i don't have a battle, you will get throu this, like jimjams and others here i mostly spend my time with other families with SN children, support groups can be good too.

Dingle · 10/10/2004 20:19

I don't know if anyone else is like this but I seem to go from one extreme to another. Most of the time I run around like a headless chicken, spending every spare minute of the day with the children and particuarly with dd and her speech & language program. This could go on for weeks and weeks until finally I snap! I think it's just my bodys way of saying "for goodness sake step down a notch or two before you run yourself into a early grave!" Everything seem to get to me and I don't have the enery or motivation for anything.
Luckily this "downer" doesn't usually last long and I'm up & running again!! Why can't there be just a happy medium? Is anyone else like this, or am I alone?

Jimjams · 10/10/2004 20:28

I think the main thing about support groups (for me) is that it's like an introduction agency- for friendships. I get to meet people who are in the same siutation as me and within that group of people there are some that become close friends.

Funnily enough DS1 has just had a new LSA start last week- she has a son with AS and I actually met her a couple of years ago at an autism coffee morning I arranged. We had quite a lengthy chat then and had spoken on the phone- we didn't meet up again but I always felt we were on the same sort of wavelength. Really pleased that she is ds1's new LSA - she got him well and truly sussed within days and isn't fazed by his behaviour at all (she even described him as 'ameniable"!). I'm not sure of the relevance of this- just that it can help to build up a network through SN groups as well even if you don't need them to provide actual support. I simply wouldn't survive mentally if had to spend all my time in the NT world.

Also agree with Davros about deciding yourself what is your "me" time. I'm always being told to go for massages etc but tbh I find them a pita- have to arrange childcare- don't particularly want to strip off etc! Last year I ended up doing a Japanese evening class- lots of people thought I was mad- but for one night a week I was away from autism, away from kids, and had a different group of friends. Worked for me!

lou33 · 10/10/2004 20:30

You are not alone dingle

Jimjams · 10/10/2004 21:07

Does anyone else find that they are really down a few days after a big meeting? ALWAYS happens- I now know its going to and so I'm not surprised when it happens- lasts about a week and then I feel together again. Be nice to me the week following the 22nd- we have the statement review

moderatorlou33 · 10/10/2004 21:11

yep, me!

lou33 · 10/10/2004 21:12

argh! keep forgetting to switch names!

Jimjams · 10/10/2004 21:16

we don't need mods in here

Glad its not just me. Can't even open extra wine at the moment. Pregnancy hormones + statement review = BAD combionation (add in in-laws coming to stay the whole of the week after- and OMG!!!)

coppertop · 10/10/2004 21:18

You're definitely not alone, Dingle. At the moment I feel as though I'm barely treading water. Ds1 is actually a dream to deal with compared to ds2 right now. 20 meltdowns a day seems to be about the average for ds2 just lately. He's been awake since 5am (after finally getting to sleep at midnight) and has smashed a mug, trashed our living room, headbutted me half a dozen times, kicked dh, and was about to hit me in the face with a tennis racket. I won't even go into all the near-misses we've had with ds2 literally climbing up the walls. And that was just today.

I either cope well or not at all. Today it's definitely the latter.

Dingle · 10/10/2004 21:20

My worst is around dd's motor skill group at our CDC. What a complete waste of our time, effort & parking money. DD gets more input and motivation in our garden!! I am really down and depressed about everything when it's due- negative about all aspects of dd's development and have often been know to shed to odd tear driving home like a lunatic to pick ds up from school in time!!!
YYYeeeaaaHeeeyyy... don't have to go anymore they are going to assess her at her SN Nursery-saying that I do have to see the orthotics clinic on Thursday. Talking about her needing AFO's again.

coppertop · 10/10/2004 21:21

I hate IEP meetings for some reason. Even when I hear that ds1 is doing well I just find them depressing.

lou33 · 10/10/2004 21:31

jimjams, I think this is about the only place I haven't ever had to don my mod hat and strict look.

We had a paed review on friday, which was all quite positive, but I still crashed this weekend. Stress isn't it? The build up about what is going to happen, will there be any bad news etc. I fell asleep with all my clothes on at about 9.30 on fri evening, and apart from waking briefly at 3, slept through until 12 the next day! I reckon it was the combined stress of the appointment and the birthday of my mum, who is dead. Just knocked it all out of me.

Jimjams · 10/10/2004 21:39
  • hope you get stuff sorted for ds2 soon coppertop.

I have the pleasure of meeting the new Ed Psych on Tuesday. I've never met an Ed Pysch I dind't think was a total waste of interfering space And I have been warned by a mum at the school that this Ed Psych appears to find it impossible to say anything nice and just paints a very negative picture- and her son is way way way ahead of ds1!!!

But Lou Thank goodness we're all friends in here!
Jimjams · 10/10/2004 21:39

oh boy- that was a to the mod comment- not to the rest- hope you're feeling on top of it again!

lou33 · 10/10/2004 21:42

I understood

Getting there.


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Jimjams · 10/10/2004 21:46

Dingle- one thing I find with ds1 is that his development will plateau- often for quite a long time- then just as I'm getting really down- whoosh off he goes again- makes several leaps then it all slows down again. And my emotions follow a bit behind!

Jimjams · 10/10/2004 21:48

And if all else fails dingle- your dd could take a leaf from ds1's book- he now refuses absolutely point blank to go into the CDC! So we don't have any nasty meetings there! Don't blame him- I hate the place!

rivers · 10/10/2004 21:51

Just wanted to add message as I joined Mumsnet ages ago but hardly ever post but it is so good to read messages like this as you realise you are not the only feeling stressed by appts,dr's etc. I am so glad message boards like this exist as otherwise I would feel so isolated. My daughter has to have lot of operations and sometimes the results are not what we wanted and that is when I find it so difficult to remain positive. Sorry to ramble on but it has just been so helpful to read your messages.

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