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Hate who I've become since having a child with SN

(25 Posts)
ChangeyMcNamerson Mon 09-Dec-13 16:21:55

Name changed, but have been a long standing mner since 2008. Just need to get this off my chest, hope someone can relate to it as I am feeling so grim ATM.

I used to be such a care free person, would help anyone who asked for help and had time for my friends/family.

Now I am just so grumpy and stressed. Don't have time for most people and often feel at the end of the day that it's the world against me and my family.

I lost a lot of friends when my child was dxed with SN, even more so when I stopped meeting up weekly for coffee and chats. Now I wallow at home on the Internet most of the time, or battling for things my child is entitled to. Nobody seems to want to meet up with me, and if they do they never bring the subject up of my child, it's brushed aside. I don't feel like I can talk about my stresses with anyone, as nobody I know has a child with SN.

I've tried making friends at local support groups/SN groups but I suppose everyone is in the same boat and has their own problems.

I'm not myself, I don't feel like myself. I'm not happy in my body either. I comfort eat, I've lost all pride in my appearance, I don't care if my hair looks in need of a wash. Gone is the person who had lovely nails, nice hair and nice clothes. My husband hasn't said anything, but he is probably thinking what a state I'm in.

I'm not me any more, I miss me.

PolterGoose Mon 09-Dec-13 16:42:03

flowers

I wish I had wise words, I know it's hard and it's lonely, but am happy to have a virtual brew and cake

Bluebirdonmyshoulder Mon 09-Dec-13 17:04:22

I understand how you're feeling. That was me for a long time. But I'm 'me' again now and I'm staying that way.

What do you need to do to make you 'you' again? What hobbies / interests did you have before? What three changes in your life would re-ignite your self-confidence and bring a spring to your step? (Simple changes, no wishing for sun-drenched islands and a private yacht please!)

You can be 'you' again, I promise.

I could have written your post. I really could have.

I took St John's Wort for a bit to give me a bit of a lift and vitamin tablets (god I'm not suggesting these are some miracle cure so don't take it that way). I also got a bit of a routine again. Just simple things like making the bed every morning and cleaning the toilet.

I also meal planned, simple meals, just so they would take care of themselves and I can add to them when I am feeling up to it.

Then the main crux - I got out. I became class rep and although a bit stressful and my preference never to go to a class coffee or drink, I kind of have to, since I organised it. I also have to interact with people re teachers presents and stuff. I try and also go on a long walk once a week in a nice location.

All of this has really helped. The house is still a mess. I am still fat. I still spend far too much time on the internet but I do feel better overall.

So can you volunteer to do something undemanding but where you will meet people for a very short time once a week?

Moomoomie Mon 09-Dec-13 17:23:46

It is so difficult, do you think you maybe depressed? It sounds like a possibility from your post.
I believe that when you have a child with a SN you certainly find out who your true friends are. Unfortunately for you many of yours were not true friends.
Try and keep in touch with the friends you have, even if meeting for coffee is the last thing you feel like doing.
thanks and cake

Oblomov Mon 09-Dec-13 17:40:35

I know how you feel.
I don't even know what happened to the 'old me'. I don't know where she went, or how I ended up as the me, of today.

Take comfort from us, that there are many of us who understand.

ChangeyMcNamerson Mon 09-Dec-13 18:02:53

Thank you everyone. Really means a lot for you even to respond.

I started a job the beginning of the year, only dinner lady at school, nothing too exciting or energetic, but it gets me out the house. Problem with that is it's 5 days a week, awkward times and I don't have time to myself during that time.

I was looking at going back to school next year, doing an hefc and applying to uni for nursing, but the course is longer than I thought time wise, and with having three children would mean too much for child care, majority of child minders I've spoken to either said no to SN child or want double as would class him ats wo children confused and I can't afford it. Absolutely gutted as it was the one thing I thought I could do just for me.

Could I be depressed? Possibly, have had depression on and off for years, had medication, last time was in 2006 just after the one with SN was born. Have had counselling to deal with my anxieties with having a child with SN (he has ASD/dyspraxia) so not a huge disability but it rules the household iykwim.

Even if I had a friend in similar who lived nearby I think it would help. I did befriend someone who I thought would be ok, but I found she put all her problems on to me without reciprocating and left me feeling worse than not having her around.

And you're right, the people who are no longer my friends were not true friends.

I just wish someone IRL would listen without saying "I know how you feel" when they blatantly don't! Not even my family want to listen, they think I should just out up with it, my mum was even questioning why I get respite and when I was panicking about it being taken away from review last week (it wasn) she just shrugged and said "you'll just have to out up with him like everyone else does".

ChangeyMcNamerson Mon 09-Dec-13 18:03:19

*class him as two children

signandsmile Mon 09-Dec-13 20:20:51

Can relate to that feeling, (and am still working on it)

just a couple of thoughts; are you registered with local carers centre. reason I am asking is ours (in south west) has a deal where carers get a lesiure card to get free swimming off peak, which really helps me...

also have you looked at the OU for study, (must declare own interest, as I work for them, very part time), but am an ex OU student myself, and for flexibility; while still doing something for me, and something that has an impact for future employment, personally have found OU hard to beat.

be kind to self.

GoodnessKnows Mon 09-Dec-13 20:49:02

Can identify with so much of what you're saying. Holding out a hand of friendship. IME, being a mum is actually rather an isolating experience for mummies with SEN children.
I comfort eat, too. I started Slimming Workd ages ago and graze all day on fruit and veg. Losing weight has helped me to feel better about myself. But I'm always aware that my propensity for noshing could get me at any moment. Lol
If you're in Hertfordshire, there's a SEN Parent Facebook network you could join. I'm sure there are others. It's quite supportive and we meet in RL occasionally.

ChangeyMcNamerson Mon 09-Dec-13 22:08:41

Sign, never heard of a local carers centre. Might look into it, but think if there were such a one my SW would have told me.

OU course, tried looking online earlier, but the nursing ones are all employment based, thanks for the suggestion though.

Goodness, thanks for offer, but am up north.

I think I want to leave my job as even though only there for just over an hour I'm not getting anything from it, it's making me more miserable having to drag myself in. DH says it's up to me, we don't need the small salary it brings in. But then I feel I'm letting the school down.

specialmagiclady Mon 09-Dec-13 22:55:37

I am on the same road, but not as far down I think. It's scary.

We were somewhere the other day and there was a family of small children chucking leaves at each other. We used to do that sort of thing, but never do. Just can't raise the gaiety any more.

One is reluctant to bore the tits off one's friends with all the SN stuff, and it's hard because a) they patently don't know how you feel and b)it's really hard to get the subject out of your mind.

I know that it definitely helps me to ask other people how they are? no really how are you? Then I get all their problems which - while not the same - are at least a distraction from obsessing about my DS1.

I also take great solace from the other parents at school with Spectrummy kids. Just a look across the playground can be supportive.Like when the kids have hidden from the terrifying Christmas decorations…

Talk to the doctor if you think you might need to (you might need to). But talk to other people too. Bloody everyone if you have to. Use your network. And I don't mean the internet.

Real friends will help carry your problems just as you would help carry theirs.

I definitely find listening to other people's problems really helps with mine. Everyone's life has shit in it. It's good to get it out and compare it sometimes. That monster turd you've been carrying around may actually be easier to bear than someone else's overflowing jugs of runny squits.

Oh GOD - HOW REVOLTING! so sorry….

homework Tue 10-Dec-13 01:48:15

Changey , most nursing courses are full time , hospital/ uni based .
Why don't you look at getting a job as a carer , your have all the qualification then some , if you use bank in hospital / community you could do shifts that suit your family . They can involve all sorts of stuff , for basis care giving , to ensuring someone taken there medication ( diabetic who has needle phobia , or can't see if amount being given etc) . Some of these just cover twilight hours.
You can use this as experience later to get on nursing course and if you end up working as axillurary you can apply to do course though your hospital without loss of pay.
Get you out meeting all sorts of people , you already have amasing skills from caring for your own child and crap you been though gettingand giving them support .
You also be getting payed , little extra money never goes amiss.
Remember nobody is same person after there haved a child , weather that child's sn or not , they change you as a person . You just learn a whole load of skills you didn't know you where going to be learning.

GoodnessKnows Tue 10-Dec-13 07:35:40

Someone had posted this in Facebook this morning and I could relate- as can many of my good friends. Perhaps you can too...?
http://www.upworthy.com/what-is-depression-let-this-animation-with-a-dog-shed-light-on-it

YesAnastasia Tue 07-Jan-14 10:50:51

I know this is nearly a month old but I found it in a search because I feel the same way!

Only I think it's my fault I'm lonely. Since DS started having difficulties at school and begun the assessment of SN I have started to withdraw from everyone. I don't want to discuss it with anyone because whoever they are, they're making assumptions or judging or feeling sorry for me or whatever & I don't want any of it - I don't have the energy for anyone.

This is not like me but I just wanted to let the OP know that I'm 'Up North' too & maybe we could chat...

Mollyweasley Tue 07-Jan-14 20:20:09

I can relate to withdrawing when it becomes to much.
What kind of SN do you suspect your child might have?

YesAnastasia Wed 08-Jan-14 01:13:22

We think it's PDA but have been told to consider aspergers with PDA. Maybe dyspraxia too. It's very confusing and I spend my most of my time thinking about it/ him and worrying.

I think I need something else to do/focus on but I don't have the energy or inclination. I should probably speak to someone or get antidepressants but I delay that too, I never seem to make myself a priority...

Mollyweasley Wed 08-Jan-14 09:46:55

Your reaction seems completely normal within the world of special needs.
(I like the expression "redefining normal"). My DS was diagnosed with Asperger syndrome aged 7 a bit more than a year ago. The wait for diagnosis is very difficult, I did feel in a bit of a limbo. I think there are things that you can do when you wait to make it more bare able: 1)it doesn't hurt to read about ASD, especially if it interest you:Tony Attwood's book: "a completly book to Asperger syndrome is the place to start. 2) there are some strategies you can put in place already to help your child and your family. There will not hurt if he hasn't got any neurological difference but you will be one step ahead of the game if he does. 3) keep in touch with this board: it is full of good advice and understanding people, who have been through the same thing.
This could make you feel proactive and help you take back control.

It is not you fault you are feeling lonely. What you are going through is isolating because most people do not go though it and some of the ones who do keep it quiet if they can (although I know it is not always possible)
There are a lot of things I have learned about myself in the last year and I suppose it could help you too:
1) on withdrawing: it is possible that you withdraw because you need to, so why not do it in style. Don't beat yourself up about it. DO take the opportunity to relax and do something you enjoy (for me, quiet room, headphones and my favorite TV serie on the iPad). When you have to go out and mix, you could try and plan it: think of the people that you might see and have planned topic of conversations away from the the subject of SN.
2) On feeling depressed/stressed: you could try and reconnect with the feeling of a) being relaxed: take a big breath, clenched your fist and let go. The feeling you get when you relax the fist is the feeling of relaxing.
b) being happy: think of one think that has always made you happy/laugh, 1 thought for one second. Enjoy the feeling and make it last for as long as you can. Then go through your day and try to spot the times when you feel these 2 feelings (happy relax) and make them last as long as you can.
3) On changing focus: do you usually have an interest? Do you work? I don't. What I did is structure my day as much as I could (with housework and things I have to do,trips out) and then allow myself time for what interests me. If your current interest is ASD and other SN...why not embrace it. It is mine.

I read a lot on AS and found out that it described me a lot. I did get a diagnosed of Asperger Syndrome and ADD a few months ago. This help me tremendously to cope with my child's diagnoses and stop worrying about his future so much: I've done ok so I am to assume that he will.
Oh and also we watched the sitcom the Bing Bang Theory (I think it is controversial in the world of Autism but it did help us a lot)
Sorry long post, hope it helps though!

bochead Wed 08-Jan-14 12:19:17

We LOVE the Big Bang Theory in our household.

I'm finally at a point where I can do an OU course (haven't they gotten expensive!) and am enrolled for the Feb intake. I started by enrolling for a couple of those wowcher/groupon courses (very, very cheap and can be done online) just to get me into the swing of using my brain again. I did the TEFL and Higher level teaching assistant, but I have seen care related courses advertised.

No longer being able to go out in the evening has turned me into a proponent of the daytime coffee shop meet up. Occasionally I've been lucky enough to meet another Mum from this forum (so nice to put a face to the user name).

Community farms are good for activities you can do WITH the kids and meeting people. The kids wind up doing their thing, while the Mums inevitably gather in the corner for a cuppa just as they did at toddler groups when the kids were younger. Often these places have staff who deal with adult volunteers with disabilities every day. Once you've seen a 6 foot 50 year old autistic melt down, a 12 year old doesn't make you blink an eye.

I really, really need to visit a hairdresser as I have horrid mixed race hair that has needed attention for years now. Trouble is they set DS off, and I have no sitter. It's my new year resolution as looking like a haggard witch is depressing in and of itself. I also need to arrange childcare for a smear test and a dental visit.It's so easy to stop taking care of yourself, but I got so run down physically last year that a lesson has been learned.

Social isolation is a problem shared by many of us here, it's one of the reasons this forum is such a god send.

One day I'll even go on a date and end a decade long spell of celibacy wink

YesAnastasia Wed 08-Jan-14 19:07:40

I'm sorry I hijacked this thread, I hate the kind of person who makes everything about themselves. Are any of you the name changed OP?

I think the advice is useful for both of us though, it's very good advice smile

It must be 'handy' to have such an insight into his behaviour MollyWeasley I'd love to know how DS is feeling/what he's thinking when we're dealing with stuff.

bochead you seem upbeat and happy despite the difficulties. And btw I envy your celibacy. CBA.

I think I'll start reading again & I clearly need to have been watching Big Bang Theory! Never seen it.

Mollyweasley Thu 09-Jan-14 10:30:36

Nop not OP!
Good luck and let us know how you get on!

SoleSource Fri 10-Jan-14 12:53:14

Hello Changey thanks I look a state too it can get better

xxx

CurrerBell Fri 10-Jan-14 22:02:35

I can relate so much with what you wrote in your OP, Changey. I find the lack of comprehension from others and the isolation the hardest thing to deal with since my own son's dx.

Fighting to get support (dealing with school politics and professionals) can all be very emotionally draining, so it sounds like a very natural reaction to want to withdraw, just as Molly said. Especially when other parents' comments can be less than helpful. I definitely find myself avoiding certain people I used to be friendly with, just as a kind of self-preservation.

But it won't be like this forever, and you will meet people who understand. I'm beginning to realise how many families are affected by ASD, and yet so many of us start out reeling from the dx and feeling alone and isolated. I just found out our local support group has a waiting list of about 60 families! I have offered to administrate the group's Facebook page and organise meet-ups (am in the South West though) - perhaps something like that exists near you? It sounds like just meeting one or two others to talk to would make a huge difference.

Just wondering - do you work at the school where your son with ASD goes? If so, perhaps spending time there on a daily basis could be adding to your stress...? Personally I find when I'm at the school or anywhere near DS's classroom/teachers I tend to be quite tense and on high alert for problems - so just wondering if you are feeling similar?

bee169 Sun 12-Jan-14 14:03:53

I also could have written your post- being the mum of an SEN child can be incredibly isolating.

thanks if you are the NW London area. PM me - I would love to meet another mum

Take care of yourself

sunshinemmum Sun 12-Jan-14 18:05:02

I feel like this at times, I was really fit and healthy in the early years with ds and then I hate to say it but his autism diagnosis has had an impact on all areas in our family. I started a very small, local support group via a closed/secret facebook group and it has grown slowly by word of mouth.

Some people just like to chat, share and vent on line but a small number of us meet up monthly. This is lovely because it makes me feel left isolated.

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