Oops I got a bit drunk

[PrinceRogersNelson]

I went to the pub last night with my group of local mums. I drunk maybe one too many glasses of wine and started talking about the reality of schooling and general life with a child with additional needs.

Had lots of comments of ' you must make sure you enjoy her', when I was talking about the daily battles I have to make sure I get her help. Also people wanting me to assure them that she will catch up and be fine.

Anyway I think I managed to shock people with the reality of the 'help' kids get, that fighting for help for your child does not equate to not enjoying them or not being proud of them ( people really don't feel comfortable hearing anything other than my darling is doing well fob they).

Rather regretting my drunk talk now of course and now I have to get up and go to work'

Balls.

Hope the hangover isn't too bad.

I've had a similar session in the past when there had been one too many of the "but he looks so normal" and "have you thought of.." comments.

I'm not really aware of any bad fall out from my unusual openness. Possibly a couple give me a wider berth than before, but a few others seem more understanding of our families limitations and have shown themselves to be lovely.

Maybe we should look at it as an exercise in sorting the unpleasant judging ones from the ones who are supportive , but just didn't realise the reality of living with a child with additional needs.

I have had breakfast now so hopefully I'll start to feel better soon.

I think you're right. People didn't seem to
Understand the reality, particularly with school and howuch pushing you have to do.

I think it's also realising that I'm not ok with it all actually.
The truth comes out when drunk doesn't it?

No, they don't understand.
And never will.
So don't beat yourself up x

Thanks.

I think I need tea

I won't beat myself up. Very little point really.

I honestly don't think other parents realise what we go through. When I had my other (now grownup) children, I totally didn't realise and probably would have been one of the mums who tried comforting but pointless words.

I know now.

Can I join you with a cuppa?

Yes please join me. I have had some chocolate cake too, so starting to feel better.

Like Towiela, with my older 'nt' 2 ds's, I didn't have a clue about SN's, well actually my brother was ASD, so I thought I had a bit of a clue, but I didn't!

Then my youngest ds was born and I was welcomed to the world of SN's and the fight for help and it was a bloody shock!

I became disabled myself in my 20s so I had some idea about difficulties.

However I had always vaguely thought that access to services would be easier if you had had disabilities since childhood.

Hollow laughter at my previous self.

I think it comes as a very sad shock how are children are treated when trying to get them an education which they can access. My dh has been very shocked. My BIL has always been treated fantastically by his LA - but then the new cynic in me thinks that was only because he is so severely mentally disabled (now aged 50 but with a mental age of a 2 or 3 year old), that he was never going to need an education so an education was never an issue.

I think people were genuinely shocked by how much extra work I (and all of us here) have to do just for our children to access an education. And how much pushing and nagging and e mailing and how many assessments there are which materialise in to very little actual help.

I think what makes me sad though was people trying to tell me to make sure I enjoy her. Like I don't. Why do people think that me talking openly about her needs and me taking her to see people equates to somehow me not enjoying her.

I enjoy her very much. She is my daughter and I love her.

I hate the thought that people think I don't :(

Towiela same here my brother was severely mentally disabled, couldnt talk, couldn't sign, deaf, partially sighted and ASD, very aggressive etc. My mum had little trouble getting support for him.

Then along came ds high functioning in terms of academics, very passive.

I often wonder what the difference is and reached the conclusion that it is what help makes it easier for them to deal with the child is what you will be offered without a fight. The help that is best for the child, is the help you have to fight for.

Yep. I agree Claw.
My DD is no trouble to anyone.
Essentially noone really cares whether she reaches her academic potential except me.

I do accept that though. But when her IEP is being reviewed 2 days before the end of term because noone apart from me thinks to arrange an appointment to do it I get a bit annoyed.

And then I get drunk apparently. Oops.

claw2 - Sadly I think you are right. My BIL is never aggressive so my MIL was able to keep him at home until she was in her late 70s. So 'school' for him was a daily 'holding place' (for want of a better word), until he grew up and a day care centre took over.

For the last 8 or so years he's permanently been in a residential care home. The cynic in me would say that it was so easy to do because as a grown man, he attracts considerable state benefits - which, of course, goes straight to the care home (quite rightly), so no extra money is needed for his care. The cynic in me would say that if by MIL had tried this when he was a child, she too would have had to have gone to Tribunal.

I think way really gets me is that people actually think that all these pesky sn/sen kids get all the funding and resources.
There was a thread not long ago in the education boards.
They believe it!
They really do.
And I despair :(

Yep Towie, similar story, my mum kept him at home, school for him was a centre, more like a babysitting service for school hours. As an adult into a care home, where as you say he paid his own way.

Yep again Prince, ds is a problem to no one but himself. He doesn't scream, he doesn't shout, he just sits quietly and passively in the classroom. If he didn't understand what was expected of him, never raising his hand or asking for help, just told off at the end of the lesson for not completing any work! Which then results in anxiety about getting into trouble, him not eating, not sleeping and silently self harming when he gets home. Which of course is a 'home' problem, not an educational one.

At that time, I used to wish that he would scream, shout, throw a chair. What a terrible thing to wish for.

I think it's good that you spoke out. I love my DD but I really hate the fact she has sn. Rightly or wrongly, that is how I feel. I know some people say the sn is just part of their child and they wouldn't change it, but for me, given the chance, I would change it in a heartbeat. I have never spoken to anyone about how hard it is and the realities of every day, plus my worries of the future, because I just can't see anyone would really get it and whether they would actually hear the part of my com

Oops...posted by accident. Meant to say, I'd worry they wouldn't hear the bit about me completely loving my child. So thank you on my behalf for speaking out! Hopefully some people now have a slightly better idea of what it can be to have a child with sn

I love my son.
But if I could have stopped him having sen I would have.
Not for me.
For him.
He is doing really well now but it's been a long road and I feel broken.

When I was telling my mum about DS1's diagnosis, she talked over me and said "well, you need to concentrate on his good points". Which was helpful.

And every time I talk about him, and the increasing problems that are becoming apparent and other specialists I am trying to get him referred to, she changes the subject. It feels to me as though she thinks I am silly and should just brush these things under the carpet and talk about his "good points" when she herself keeps telling me how difficult he is but apparently I am managing him all wrong. So it isn't just friends that don't feel comfortable with the subject, family can be pretty useless too.

I was in a support group recently and was talking about trying to seek a secondary diagnosis SO I CAN TRY TO ACCESS SOME FUCKING SUPPORT FROM ANY FUCKING PROFESSIONAL AND NOT HAVE TO FIGHT ALL THE TIME and I was told I shouldn't focus on the negative bits because "God doesn't make mistakes". I felt like saying "Well, he is obviously a bit of a cunt then" but I didn't. Wouldn't want to be unsupportive

Its so refreshing to hear other mums talk so openly!! I really thought I was the only one thinking 'this is really shit'.....glad Im not!!!
Awful to hear so many of you talking about fighting and struggling with proffs for your dcs. My dd is only 4.5 and is starting school in september so I suppose Ive still got it all to come but so far I really cant say a bad word against the profs weve had contact with and the nursery support weve had...its been first rate!
And just while we're bitching....my pet hate is when people say things like 'oh but it must mean sooooo much more when she finally does do/say/manage it??!' I want to scream NOOOOOOO IT DOES NOT!!!!! Pride in your kids achivements is the same over....personally would have chosen not to have the extra 3 years of coaxing her to say 'mam'!!!!

You took the words right out of my mouth JoCook!

I get 'you wouldn't know he has autism' hmm what are the physical signs of autism, how would one know if a child had autism, are they expecting him to grow an extra head!

I have come to the conclusion that it doesn't help me to talk frankly about DD, apart from when I post here. I'm not even sure what I want anyone to say, to be honest.
My friends are lovely. They always ask about DD and include her in everything. But they have no idea what it's really like. And why would they. There's a world of difference between being sympathetic to the concept of SN, in an abstract sense, to the reality of actually dealing with it yourself. Until DD, I would have been sympathetic to anyone with a child with SN; in a vague, detached "oh, that must be hard, you're doing so well" type thing, and then gone on my merry, oblivious way. It's not a criticism, but I just think that many people think SN is something that happens to other people, not to them or theirs. Until it arrives at their door.
I am very good at being positive and upbeat. Life for us is genuinely good, but that doesn't mean I don't have fears and worries. I also had a few glasses of wine recently on a night out with friends. They were asking about DD. I spoke a bit more frankly than normal and told them that I lie awake at night and worry about what will happen to her when I die. They looked stricken, and the conversation just stopped. I won't do it again.
Likewise with family. They are brilliant with DD, love her to bits, and really help me. For ages though, they were mainly all determined that she was "absolutely fine", "nothing wrong", 'get there in her own time". Whilst they now accept that she has the dx, it's moved on to them thinking that she has some type of 'autism-lite", which won't really affect her . I suspect that even DH, who is a bit more realistic than everyone else, still secretly hopes that the dx was wrong!
Prince hope you feel better today, I love nights out but I hate hangovers

Marchduck - you are very right. No one was awful or said anything awful. It was all well intentioned and said with kindness. But people inadvertently say things that are wrong. Through no fault of their own.

I just felt a bit over exposed because I said things and admitted to things (for example, how this wasn't supposed to happen to me and that I still struggle with accepting that this is who she is) that I wouldn't have done had I not been a bit under the influence.

I do feel better today. Although still a bit tired. I really am not as young as I used to be.

Oh god. Absolutely.
I remember feeling completely aghast that my child couldn't read.
I read avidly...always have done. House full of books.
The very idea my child would have literacy problems had never EVER crossed my mind.
It seemed like some sort of sick cosmic joke.
Then I realised this was my reality and just got on with it.
But, yes. That feeling of "that can't happen to me" rings very true :(