"She has managed to get her two talking...." Now I feel like a real sh*t mother!

[Merlot]

Feeling low today...period due...weepy and tearful and I have been trying to understand what has sent me over the edge'. I've come to the conclusion that it was the following. I hope you dont mind me sharing it, but I feel that I need to get it off my chest'........So here goes!!!

On Saturday I met up with an acquaintance whose friend has two twins the same age as ds2 (22 months)....both of the twins were born very, very prematurely and the little boy, in particular has established brain damage and significant delay as a result .

The acquaintance and I were talking and I asked after her friend and children because I suspected that our paths might be crossing somewhere along the lines.. In particular I asked whether the twins had been learning Makaton. My acquaintance then delivered the almighty blow....with the words.."No, because my friend works really hard with them and actually she has got them talking...." I was so pleased for that mum, but so hacked off with my acquaintance....

An innocent enough remark....but to me...`SHE has got them talking..' is so f*cking loaded. And makes me feel particularly crappy...because I haven't got MINE talking

It was compounded when one of my friends (who is the specific classroom support for a little girl with Downs Syndrome) that the little girl was doing great....because her mum works so hard with her...and it has made all the difference with her speech. `Great stuff' but again I felt that because ds2 isnt babbling, let alone talking... she was making a judgement of me

Because my ds2 has no dx, we just dont know what is in store for him, but he is being tested for syndromes where there is never going to be any speech and so I wanted to shout from the roof tops that there are some children who will never speak....and its not due to the lack of trying from their mothers!! and oh so bloody sad

Sorry....rant over.....Grrrr!
Anyone else had to deal with these sort of comments?

this is awful- last year someone similarily asked me if i was sure i had done all i could for my boys..... i was upset for weeks.

hey merlot, i just drove through your village

My Ds1 was an advanced child who talked early and did what he was told and I certainly was willing to take some credit for it - it's easy to be smug and sanctimonious when it's all going well. Ds2 is so opposite, struggles with so many things, likewise no diagnosis. They are both my children, I love them both, I did not treat them differently. If a child is going to develop normally it takes severe abuse to knock them off track. And conversely if a child has developmental problems it may be only miracles that can cure them. Please don't feel bad Merlot, it's just another burden that you don't need.

Merlot, I feel your pain!! Recently I went to DS2's new school and the head gave a lecture on how if we all spoke to our children, showed an interest etc etc (all the stuff we all do anyway) then speech problems would not be so rife! Well problem solved then, I will talk to my severely delayed son day in, day out and look interested and he should be speaking in no time!!
My friend had to hold me down from tearing his head off!!!
ps if this was fact my ds would be able to chat the hind legs off anything that had hind legs!!

saker- you said that so well....here here!!!

Ah Merlot my dear,just read this through with a mixture of sadness and anger. You know (I think( that I am a salt with a communication disordered dd.
If your 'acquaintance' is right (which she isn't of course) then I should be struck of my professional register as despite all my efforts (which I am sure you can imagine are pretty monumental) my ds is still in a bit of a mess as far as communication is concerned.

People have no idea as in the example cited by Yogi. In my paranoid moments, Iimagine people snickering and saying 'She calls herself a salt of all things.'

I too have several friends who are rather insensitive in crowing about their children's communicative achievements.In all honest however,I do not believe it is deliberately maliciouis and have resolved never to let my pain over dd's difficulties mask my joy and interst in other children's achievements (although it is sometimes hard.)

God, all the comments you've reported are so crass. So sorry you have to put up with this sort of stupidity. Nearly did it myself here once - was just about to write a thread in astonishment at a new skill ds suddenly started using when I saw someone had posted that they were worried because their older ds couldn't do it at all. Really made me stop and think.

Honestly Merlot, some people

I avoid certain people like the plague as they make me feel the way you are now

I have one old "friend" who constantly used to compare dd to her dd as she has NF . Saying that dd was a lot worse etc and contstantly comparing. Bumped into her at the weekend and she said something like oh yes it was obvious from very early on your dd had something wrong. WTF ??? It was extremely obvious her dd did but I don't need to say it to make myself feel better.
That's from another parent who has a special needs child. Always saying things to make herself feel better. I have really distanced myself from this woman as she is ao annoying and tbh I have net a few people like that with sn kids.
Just distance yourself from people that make you feel down. I have and feel better for it!
Oh and you are doing a fantastic job and just from your posts on here I know you do all you can to help your ds, so please don't beat yourself up! Bloss xxx

agree totally with BH...i don't choose to spend any time with people like THAT

However ...like you Merlot...i still get deeply hurt by what people say..... so i still have a long way to go befoer i can say i can ignore comments.

Message withdrawn

Stalky Stalky!! Hi R'n'B......XXX Creep Creep CreeP!!!

{sad] that everyone has a talke like that to tell.

I have always found the phrase - BITE ME! to be applicable in these sort of situations.....(esp. yours jenkins)

Let them judge.... I also try to remember that until they live in my world and walk my journey they have no idea so are basically ignorant and display that ignorance through their inane comments

HOWEVER...

that doesn't stop me thinking are we doing all we can for dd1. I still beat myself up about the fact that we had access to so little in the UK and perhaps Dh and I should have had private therapy for her and then dd1 would be further on than she is now..... although there is no proof that is the case. So dh keeps telling me not to waste my energy on what could have been and look at how far dd1 has come.

You could tell her that speech is such a small part of communication ..... AM about to embark on a language therapy course for parents - which invites all parent to particpate... the focus is on communication NOT speech. The SALT specifically said it will not 'teach' them to talk. You are to look at developing their communication - whether that is grunting, pointing, signing or whatever.

I have had comments about - why am I signing - won't dd1 ever learn to speak and I should just talk to her and not use signing..... I usually adopt my most patronising voice to explain the use of makaton and how it allows children who can't speak a 'voice'

Like the others who have NT children - I find it amazing how dd2 just does things - one day nothing - next day blowing raspberries, squeals, shouts etc..... so I agree with the others that they probably would have spoken anyway..... if talking to children makes them speak - gosh dd1 should be a motormouth.... ( oops she is - you just can't understand the babble)

I also think what aloha (?) said is fine.. if she is a person you want to keep seeing etc then you need to be honest and tell her that she hurt you and perhaps she needs to think before speaking. If not - remove the toxin from your life. Life is too short and stressful enough without dealing with crap from people like that.

oops -

Thanks again for all your lovely and helpful comments I am feeling a little better today, but still a bit fragile (think its largely pmt now tbh!)

Tamum - thank you for reminding me of the lovely thing that old gent said in M & S, it really helped.

Saker - What you say is so true - my ds1 talked really early (and,yep, I too was happy to take the credit) but I know that I have done nothing much different with ds2 (except perhaps worry over him more ) As you say, the child has to have it within them to talk regardless of what external input they have.

Mizmiz - thanks for sharing your story. As you say, if a SALT still has a child with language difficulties it isnt solely down to the mother!

We all know that it is important to share books and spend time talking to our children...of course we do......but it isnt a cure all prescription.

You really are a lovely lot on here Thank you.

Hey Lou! - Did you pass the cricket pitch and swings? We live a stones throw from there. Also I went to a lovely pamper evening on Friday up at Milford school - that's where your ds2 is going in September isn't it?

i can't rmember merlot, we were coming back from farnborough. Yes ds2 is going there , but in january now. Fabulous head, doesn't give homework out, and she is the senco. I almost went to the pamper evening myself, was it any good?

No, you wouldn't have come past our place if you were coming back from Farnborough - we live off of the Thursley Road (just before you get to the brothel! Dont know if you saw the documentary on tv about it? Gave us all a chuckle...)

The Pamper evening was really nice...lots of taster sessions on offer for various different therapies etc. I had daoyin tao massage, reflexology and a hand massage...plus 2 champagne cocktails . I floated out of the school hall!

sounds lovely

i didn't see the documentary, but the brothel is well known round these parts!

Merlot,was thinking about this today and remembered an episode a couple of years back. We have a special needs mother from hell in our district. Nothing is ever good enough and she is so aggressive and rude in her approach that most people will have nothing to do with her (it goes waaaaay beyond issues of having a child with an ASD. She is just a very nasty piece of work-done for benefit fraud on a massive scale recently.)

Anyway,I had been working with a lovely family and their autistic and extremely challenging son (non verbal. We had got him using PECS brilliantly, happily 'working' for various things his mother really wanted him to do (like staying with the family to eat),was requeasting wonderfully,using a picture timetable independently-in short,communicating really well.

Anyway,mother turned up at the school i was working in in tears one day,completely crushed by above mentioned monster. Nice woman had bumped into horrible women at the supermarket and was excitedly relating her ds's remarkable progress with PECS. Horris woman sniffed contemptuously,cut her short and said 'Good God,he should be talking in sentences now!'

It took a long time to get this poor crushed woman back on track and felling we were going down the right route.

I was astounded at the lack of solidarity shown by this woman who of all people,should have understood.

OMG, that is just so awful, Mizmiz. I saw a very good example of how spoken language does not mean effective communication today. I went to the 'unit' I want DD to go to attached to an SLD/PMLD school and there is a little girl in there with loads of language- all echoliac (sp?). She can sing songs, repeate phrases, mimic words back to an adult but doesn't use spoken language meaningfully. There is a little boy in there who I did not hear utter a word who could ask for a drink, request a break etc using PECS and signing.

I meant spoken language does not ALWAYS mean effective communication!

Exactly JakB! You have neatly summed up the entire purpose of my work as a salt in the field of alternative/augmentative communication.

It is unbelievable how many people who really should no better (eg SN teachers) would consider the little girl you describe as someone who was a good communicator. Just as awful is the scenario where people will happily have the same conversation with say a child with Autism who is fixated on a particular topic,sometimes for years on end,and consider themselves to be communicating well with the child.

Is it that hard to understand the difference between good and poor communication????? I despair sometimes,I really do.

ahh yes the mothers who get competitive......

I was told that it wasn't fair because 'all the SALT resources' were being used "on all the insert name of ds1 and friend's dd of this world" and so there was none left over for said mother's child with AS. All those resources being 1 visit each in 8 months btw. Ds1 is of course non-verbal, friend's dd can talk, but isn't exactly conversational.

Was also told (by another mother with a child with AS) that it wasn't fair that my son was having lots of money spent on him at special school because he was never going to live independently, so what was the point, money should have been going to her son as he would be living in the real world as an adult.

Never quite sure how to repond to those sorts of comments (I do a good line in fixed grins), but it does make me more inclined to fight my own battles unfortunately (whereas I used to try and battle a bit more widely).

and the really annoying thing is that when the SALT provision was being reduced, the 2 people who wrote to MP's, councillors, the press etc were myself and my friend with the dd (on behalf of all autistic children initially). Moaning woman sat on her backside and did jack all. grrrrr And I'm about to send another letter (as its been reduced again) and it doesn't even affect us now ds1 is in special school. So if anyone dare to whinge at me again- they may get a mouthful!

The second woman was just frustrated, but wish she hadn't said quite what she said to me

Have just read all of this thread and can really relate. Mostly but some did make me laugh, Yogi!
I've had many insensitive things said to me over the years, often by other parents with kids with SN/ASD. I remember clearly thinking "I am the bottom of the heap" and I developed an awful "safety net" of trawling my mind for anyone else who was lower in the heap than me! I came up with 2 people, out of the 100s I know, who I felt were just a bit lower down than me because they too had only one child, both severely autistic and non-verbal like mine, but I had a supportive DH so that put me above them, just! I'm not proud of it but it kept me going sometimes.
Like I said on another thread, if it was down to what the mother/parents put in and the services/provision available then I'd be sitting here with a normal genius now instead of a child who has been up since 5am and is rocking backwards and forwards to the same piece of "music" on a vile toy keyboard over and over again.

oh dear davros

Merlot, did Lou not mention that she works in the brothel and that she actually gets enjoyment out of her career