I feel so bad as though I make dd worse sometimes :-(

[Blossomhill]

I just feel so ashamed to say this but sometimes just feel I actually make dd worse.
The reason being that I hardly ever take her anywhere as I am frightened of other people's reactions. How awful does that sound?
The trouble is that unless I expose dd to lots of different environments then how is she ever going to learn. I am almost paranoid and I think it stems back to 2 years ago when we had to wait in a gp surgery for well over an hour and dd was really behaving badly as although you she still finds it hard to wait 2 years ago she was a nightmare. It all came to a head and I ended up in floods of tears when the receptionist told me there was still 7 people in front of me.
Today we went out and everytime dd put her fingers in her ears or hummed I tried to stop her as I hate people looking at her . Why can't I just relax and not care what other people think? It is getting out of control and I have to say even counselling hasn't helped.
I just feel like such a sht mother and a complete btch.
Sorry about the ramble but dh is at football and I needed to talk to someone

I know exactly how you feel Blossomhill.

We've had times where we've been at a BBQ with people who don't know DD2 and her SN and DD2 starts acting up pushing over the other children smaller than her just to get a reaction - (time to go!!) Sometimes we wonder why we bother but we always try to get out and make life as normal as possible.

The hardest thing really is that people don't see the special needs - all they see is a naughty child. We are getting that from the school - some of the teachers don't even believe she has autism. It's like talking to a brick wall - but we've only 4 more weeks there so will ride it out because generally the socialisation is good for her.

Yesterday we went from London to Brighton primarily so I could meet up with the other MNetters for lunch and DH and the kids went and played on the beach and the pier for a couple of hours. DD2 was pretty good most of the time but after the trip down on the train we thought perhaps some activities on the way back would be a good idea - 99p store - we thought YAY!! We went in and started looking around - DD2 didn't know where she was - tired - threw herself down on the floor spreadeagled face down at the top of the stairs!! People having to step around her just to get down the stairs. (This is a regular occurence at home, at school, at the mall... and we just don't know what to do about it). DH moved her to a safe spot (away from the top of the stairs) so she could just chill out for a few minutes and we could try to distract her to something more interesting than the floor of the 99p store. Sometimes we just don't know what to do but wait till it passes. Then other times she is fab.

Like today. We had to go get passport photos for some visas we need to get and I was dreading it because she has always been hard to get photos of actually looking at the camera. We decided on a photo booth (like the ones you see in the tube stations) because a) there wouldn't be a person behind the camera she could get offended about and choose not to perform for and b) we could take as long as we wanted and not feel we were taking up someone else's time. As it turned out she was a little star but you know, we just knew we had something we had to do and figured out the best way to make sure dd2 was going to be able to handle it and us to.

Sometimes I wish she had better language too considering she is 5. Like tonight tucking her into bed she realised she had Pikachu, tweety bird, fimbles somebody, tigger, my little pony, dolphin she won at Brighton Pier yesterday, Sulley from Monsters Inc. but something was missing! She said "rectangle Monsers Inc". Eh? I had to think about it for a few minutes and realised she wanted the video case from Monsters Inc. that she has been dragging around with her. This whole gang has to come up and down the stairs with her, they sit and watch her eat breakfast, (I am just so pleased they don't all 'HAVE' to go to school with her), but the do sit by the door and 'wait' till she comes home from school, and then they all go back up to her bed at the end of the day and if one is missing - it must be found!! I'm trying to figure out whether I have to take another suitcase with us this summer just to accommodate 'the gang'!!

Sorry, I know this has been long - don't mean to seem like I am hijacking but want you to know that I understand totally - we have special children with all their quirks and all we can really do is the best we can with what we've got. ... and love our babies for what they are.

It is difficult to get the balance right because, imo, the less you do with them the harder it is. BUT we all need a break and we're not massochists (I speak for myself there ). But the reality is that you just know what things are WORTH doing, how much you feel up to it, whether its for the child's benefit to go or not or your own......
Pixel, I squahsed DS into a supermarket trolley until only a few months ago and he's nearly 10!!! Now I adjust my shopping needs to suit when I'm with him and I DO take him on foot with a basket, but not for serious shopping. he needs constant management, only yesterday I roared at an elderly couple who he'd bunny hopped in front of, "there's no need to stare, he's disabled", they shuffled off, prob scared of the mentalist mother
I used to know someone who NEVER did anything with her child, I spent more time with him as I used to take him and a tutor and DS trampolining every week. We had a laugh but I resented being kicked in the back of my seat while driving while she was sitting at home moaning about her lot!
Anyway, I digress as usual, we must be able to miss out on things if we really can't face them but its important not to let it get into TOO muchof a habit.

... and I hate it when I have spelling mistakes!!

bh - just wanted to agree with the others - you are not a sh** mother nor a complete bitch - sometimes it is difficult to take our little ones out and the stress is just unbearable. As others have said - she attends school and so is having all sorts of experiences through that. We try to take dd1 out as much as possible - but I can say it is definitely easy to take her when there are two of us - simply as it means someone can keep an eye on her all the time whilst the other deals with no2. I do not take them shopping - do the shopping at night when dh can look after them. I used to try and take them both grocery and it just gets too hard.

What helped me not care is having dd2 - who is NT but a very unsettled baby - she came out screaming and she has a cry that can split your head open. On the weekend she was ill but I had no choice but to take her out. Well she started crying/screaming whilst I was being served in the post office and I swear if the old woman next to me looked at her once more I was going to lose it.
Yes she is crying that is why I am trying to get served as quickly as I can and get out of there so I can console her. Dd2 can go from being calm and quiet to full on scream in nanoseconds and there are times when I can't do anything about it so I have learnt to ignore or challenge with a look stares from people along with the tuts.

As to the GP - dd1 does not do waiting well and so they know if we can't have the first few appts then they have to make sure there is not a huge queue when we get there - depending on the receptionist they will let us jump the queue. I think you should ask the GP's surgery to put a note on her file that she finds waiting very difficult and stressful and that she needs to be seen promptly. If not - is it possible to try and find another surgery that may be more in tune with your needs.

BUt I wanted to say after that ramble - that you are a brilliant mum - you have made huge changes in your lifestyle for the benefit of dd - you are selfless and thoughtful. Don't let the bastards grind you down.

My other top tip is to go everywhere with the attitude of "i'm giving this a go, if it doesn't work out then I'm bailing out as fast as I can". I felt much better when things went tits up once I'd adopted that attitude, and I found I was happier to try things (and stunned when they worked and just shruggy shoulders when they didn't).

Dear,dear blossomhill. Please excuse the profanity as I feel it's warrented here. You are a fucking star, a warrior amongst women,so full of love and passion and energy. Ppeople like you change the world of Special Needs for everyone.

Froim the perspective of someone who sees children at school and at home,perhaps I can add a little food for thought.
I find so many parents fail to realise hoe exhausted their children (and I mean all kids) are after a day at school. Factor in a communication difficulty and it is just draining. My heart sinks when I see children being dragged off to do 'improving' things after school by Social Services befrienders (a walk on a freezing November evening followed by an aimless drift around a supermarket??? Er.....no thanks!) or being encouraged to get involved in yet more stuff.
They really need a rest!!!
(A friend told me today that when her husband comes home from his dreadfully tressful job,he asks them all not to even approach him for 30 minutes. This is how so many of 'our' kids feel!!)

My advice?? Don't feel pressured to take dd to things and places that upset her.fter the full on hurly burly of a language unit,let her enjoy the peace and security of being home with those who love her most,as much as you can. This is what I have decided for my own dd too.

XXXXXX

Thanks Socci - just telling it like it is for me (and us).

I haven't had time to read all of the but I do sympathise with you BH. I too find it hard to accept ds for what he is and find myself wishing things were different, much as I love him. I know that as much as I can manage to cope with his differences, the rest of the world won't and I have to help him deal with that. But it's so hard to keep going in the face of 'normality'.

Only yesterday I had those negative feelings of being ashamed of him, when we'd invited an old friend of his to play who he hadn't seen for a long time, and the excitement drove him crazy and it was impossible to calm him, even a little. I had four hours of utter hell, watching and helping them to play, telling them stories to try and calm things down, only for J to kick off again as soon as it was over. Yet I know I'll have to do it again because the alternative is punishing my child for his disability by taking away what little social life he has.

Feel free to rant about it - if you don't let it out it festers and makes you ill. I don't think there can be a single person on here who wouldn't understand what you're going through.

Are you feeling any better about things today, Blossom?

hi I also feel the same as you BH. I think now ds2 is nearly 6 he does stand out more as not so many allowances are being made for age. Also I guess some part of me is still secretly thinking he will catch up and everything will be ok and to see the differences when we are out hurts. I feel so angry at my lovely little boy it makes me feel ashamed.

You sound like a great mum to me too ((hugs)).

Hi everyone Thanks for all of your lovely messages. Unfortunately JakB I am actually feeing worse today
Just had another example of how hard things can be. Was picking dd up from school and she was talking to her friend. Anyway the firned's mum is in her late 40's and I heard the little girl say to dd no that's not my granny it's my mum. Dd kept saying no it's your granny I quickly said my ggodbyes and whisked dd off. What do I do? How on earth do you explain correct social skills to a child that doesn't know how to behave appropriately? Seems to me this nightmare has only just started.
I swear now if there was a plane that would take me off somewhere I would go. I really am not strong enough to do this anymore. I have had enough and right now even feel resentful towards dd. Now how bad is that???

If the plane leaves this afternoon i could join you feel drained its been a bad day

I know how you're feeling BH. DS2 is undiagnosed as yet but has some SN.

I went with a friend to a soft play a few weeks back and he bit a kid. He often hits and touches other kids too yet some days he doesn't. I'm dreading him starting school this September tbh but I'll cross that bridge when I come to it.

Sorry if it's been said in this thread but your doctor's shouldn't have you waiting like that. Have you tried contacting the practise manager and explaining your situation to her, I'm sure she/he would be v sympathetic.

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Here's our virtual plane, I'm coming with you

oh well it worked in here but didn't transfer??

The thought was there though

blossomhill - what about a letter explaining about your dd that you can hand out to people? I am sure the friend's mum wouldn't have been too worried as lots of kids say awful things anyway. If it were me I would have said that my son doesn't really understand what granny means and can get mixed up with these words such as brother, sister etc. Anyway there are plenty of young grannies about!

We were talking about this on our autism course recently and some of the examples were really cringe making, like one boy who told his teacher she had a moustache (she did have a little facial hair) also another who loudly proclaimed that "that woman farted" in the supermarket queue!!

Blossomhill,so sorry you're still feeling bad. Can I just say that I thnk a lot of kids (whatever their 'issues') would have said the same?

I am the worlds worst for running myself down and I can really appreciate what you are saying! But for me there is absolutely no getting away from it. Unfortunately there are people out there who will stare and whisper about dd, even when she is behaving like an absolute little angel. I have hardened a lot in the last 3 years!
Perhaps I do take the easy way out occasionally, perhaps I don't take them both to the park as often as I should do, or swimming, or shopping. I like to spend my energy with the children in other ways, we get home, we paint, we read, we watch TV and we sing and dance along...

I feel I have adapted in a lot of ways, sit down and think about what you do actually do for your dd and how you stimulate her in other ways.

Hugs,,,,dingle.xx

Do you know what I honestly do not know how I would have got through the past year or so without you lot. You are all so helpful and kind and I only wished we all lived near each other.
I know that deep down I haven't yet come to terms with everything and , as stupid as this sounds, still think I am going to wake up and it will all disappear

Hello Bh. I have only had time to skim read this. Do you think that maybe you could do an assertiveness type course so that other peoples view of dd would matter less to you. Is there any one that you are able to discuss these situations with. Any support groups nearby that are more understanding of life with a child with Sn than a cousellor.

I am sure you are a great mum .

I wish I could give you shelter under my rhino skin. I am amazed at how assertive I can be. I am actually quite shy in real life.

Do you think you could shed a bit of that rhino skin maddiemo? You could make a fortune selling it on to the likes of me!

So sorry you are still feeling down BH - tell you what though, I am on that plane with you after today .

I know that however much I know, in theory, that what other people think of dd doesn't matter - sometimes it is hard to be that strong. I am hoping it gets better with time and experience.

You are obviously such a great mum BH - please don't beat yourself up.

I just worry about someone callling social services

Seriously though BH- how much RL involvement do you have with people with kids with the same sort of SN as dd. For me that is the big thing that keeps me sane and replenishes my rhino hide. OK so ds1 pushed some poor woman who was siting in the boot of her car reading a book out of the way in order to sniff her car light, AND sniffed the crotch of my friend (twice- oh the embarrassment) but at least he didn't pick up a random strangers dog and run off with it (as my friend's dd did). Without people to tell these stories to immediately I would crumple, but with them I laugh.....

@ your ds1 jimjams

DS2 shoved someone out of the way at Church on Sunday but he did say excuse me Don't know how he managed it really as he's only 4 and she's a grown woman! She wasn't best pleased but she's a grumpy ar** anyway and never had kids.