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It hurts

(28 Posts)
PoshCat Sun 24-Mar-13 14:55:43

I have a dd aged 4.5 with severely delayed/disordered speech and social communication problems. She is awaiting formal assessment for ASD following an in depth SALT assessment by a/specialist in social communication disorders.
I take huge joy and pride in any progress and my little girl makes and sometimes I even manage to convince myself she is just delayed and "normal".
Then I visit my niece and nephew aged 4.5 and almost 3 and realise how significant her problems are and my heart breaks.
How do I grow a pair of balls and deal with it without a lump in my throat?
BTW, I also have a 6 yr old who is being asked by peers why her sister talks like a baby and acts "crazy".
Any tips on what to say to her? She has an idea her little sister is/"different"
Thranks for any replies. smile

PoshCat Sun 24-Mar-13 14:57:29

Sorry for typos. Am stupidly emotional.

CouthySaysEatChoccyEggs Sun 24-Mar-13 14:59:31

I would tell her that everybody finds something difficult - for some people it's art, for others it's Maths, for others it's reading, for others it's walking, and got her little sister it's talking.

Find something your older DD struggles with, and use that as an example. And explain that just like she will catch up with 'X', her sister will eventually catch up with her talking.

And that everybody is different, and that's what makes the world so fun!

CouthySaysEatChoccyEggs Sun 24-Mar-13 15:02:24

(Have had 3/4 DC's with severe speech delays.)

My 9yo can talk and hold a conversation now - but his speech is still disordered and he is back under SALT for it. He didn't say his first word until he was 3y6mo. And he still couldn't hold a full conversation when he was in Reception. Now you can't shut him up - it's like he's making up for lost time!!

He still talks a bit like Yoda, but he's my wonderful, sweet DS2, and I love him the way he is! grin

PrinceRogersNelson Sun 24-Mar-13 15:04:34

I'm not sure I have the answer for you I'm afraid. I'm in a similar position with DD 4.4, speech disorder and generally delayed. She does make great progress and like you I think "she's getting there" and then I se her with others and realise no she really isn't. It does hurt. And then I feel guilty for feeling sad.

Not much help am I? I try to remind myself that it is her progress that matters not everyone else. And that she is a wonderful human being who we are all lucky to have.

Sorry other kids are being mean.

We tell our NT 6 year old that she finds things harder than others and that we need to cut her some slack.

flowers for you.

CouthySaysEatChoccyEggs Sun 24-Mar-13 15:05:38

And my 2y2mo DS3 has 20 words (though some are sounds that denote a word! Like lublublubl with him poking his tongue in and out means 'frog'!) but has only said a 2-word sentence once and never since.

He's under SALT too - I feel like I spend my whole life there!

DD has been discharged, her speech is relatively normal if a bit immature for a 15yo and she has a few words she still mispronounces (like moorer for mirror), but apart from that, she's fine.

CouthySaysEatChoccyEggs Sun 24-Mar-13 15:09:09

My DC's with delayed speech have all followed a similar pattern of speech development. By 5.6yo, they can hold a conversation, though with disordered sentence structure and many mispronounced words or ends of words left off - but they are mostly understandable.

By 11yo, their sentence structure is near enough to 'normal'.

Still the odd few mispronounced words at 15, and immature grammar and use of language.

I can't say any further than that as my DD is only just 15!

vjg13 Sun 24-Mar-13 15:47:35

I think you become tougher as your children with additional needs get older and you compare them less with their peers.

I always tell my daughter and her friends that have asked that my other child needs a bit more help with things and that seems enough to satisfy their curiosity.

CouthySaysEatChoccyEggs Sun 24-Mar-13 16:09:29

Ah, I still have days where I cry for DD and how hard things are for her compared to her peers, and she's 15!

I haven't got harder, more practical maybe, but I still have my days where I have a 'wobble' and I'm upset by it!

autumnsmum Sun 24-Mar-13 16:59:12

Just to say you have my complete empathy my dd with autism is three and a half today and I have felt really down . she is beautiful and a joy but I have had a day of thinking what she isn't doing but I know I shouldn't think like this.

LimboLil Sun 24-Mar-13 17:15:34

Hi I think there is something in the air today. I am having a bad day with it all too. x

PoshCat Sun 24-Mar-13 17:34:51

Thanks for the replies. Always lovely but hard to see family members around the same age and younger than my dd.
Got to get a grip. She is still my lovely sweet girl.

PoshCat Sun 24-Mar-13 17:37:23

Autumnsun, I know that feeling too. My heart aches and my stomach sinks when I'm forced to acknowledge how different and behind she is from her peers.
I know.

autumnsmum Sun 24-Mar-13 17:46:03

Hello poshcat and everyone else I really know how you all feel .This. Week hasn't been helped by getting a letter saying dd qualifies for high rate dla and the local ss saying yay they are expecting her in sept .Dont get me wrong I'm hugely grateful but it's really hit me about her problems.

vjg13 Sun 24-Mar-13 18:44:17

My daughter is 15 too, she is at a special school and one of the least able of the children there. I obviously worry about her future BUT have really trained myself to live in the present and just appreciate her being here and what she can do. smile

troutsprout Sun 24-Mar-13 18:50:04

I think the balls grow with time.
I think you slowly let go of that nt child that would have been. They just become them.

dietstartstmoz Sun 24-Mar-13 19:43:13

I think its always an emotional rollercoaster. DS2 has HFA and is in mainstream school and now aged 5.5, he did have huge speech delay but he has made great progress, and now he is great at talking about his interests and talking 'at' us, rather than a 2-way conversation. It has been 2 yrs since diagnosis, and I still find it very hard some days. In the early days when I was fighting battles, the whole statementing process, DLA, SALT sessions, appointments etc I think it helped to be busy and to feel like I was doing something productive. Now, most appointments are finished with, SALT see him in school usually so I don't have the same sense of being productive. I find it very hard with the whole school thing thing as he will never be like his peers and that is painful, I also have an older son and a nephew who is the same age as DS2, and I'm very aware that DS1 is becoming conscious of having a brother like this, and seeing any children make me feel sad. My niece is 18 months and wonderful, but when I see her I think, DS2 didn't do that and that also hurts. I'm incredibly proud of DS2, he is a joy and I am so proud of all the progress he has made, but I don't know if I will ever be the same again. I think you develop a rhino skin and some days you zip it on and it protects you, and other days you forget and it hurts. Maybe happy pills would help as well, but I haven't gone down that route yet but maybe I should. Sorry Op, I think we all find our way of coping but don't beat yourself up for feeling down, and having better days and sad days, I don't know of any other way to be.

glimmer Sun 24-Mar-13 20:49:27

I think it consists of two parts: the first has to do with our child and that we want them to have a "normal" life, have friends, be successful. The second part has to do with us: it's the life WE wish them and our wish to have a "normal" life and a "normal" child. I struggle with latter a lot, probably more so than most posters here. The good thing is while this might not the life I had envisioned, it's pretty clear what my dd needs and so I do it. I still mourn for my life though. Sorry no help, but honestly. I try to separate "my stuff" from "her stuff" and I think she is quite happy, so that's good.

zzzzz Sun 24-Mar-13 22:36:04

The Road Not Taken

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

Then took the other, as just as fair,
And having perhaps the better claim
Because it was grassy and wanted wear,
Though as for that the passing there
Had worn them really about the same,

And both that morning equally lay
In leaves no step had trodden black.
Oh, I marked the first for another day!
Yet knowing how way leads on to way
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I,
I took the one less traveled by,
And that has made all the difference.
Robert Frost

LimboLil Sun 24-Mar-13 23:35:46

Aw thanks zzz. This thread really helped me today, I was feeling a bit overwhelmed with the utter crapness of it all. Bit better tonight. In my case, a bit of a nap helped. And my funny little man brought me up some chocolate and a can of diet coke courtesy of dh.

zzzzz Mon 25-Mar-13 00:02:29

Sometimes it's crap and sometimes it's quite challengeing but it is always an adventure. I have nt children too, but I have to admit I like my little wild just don't know where the hell you're heading! grin

Bryzoan Mon 25-Mar-13 01:11:02

Same here - my sister and her kids visited today and chased dd (2.8) round soft play. They are so great with her and she adores them. But my niece (7) asked why dd can't walk or talk so I had to explain that her muscles are weaker and she finds things much harder. I was really impressed with how she handled it - making it her mission to help dd along in a really lovely way. I was really touched but it still reminded me I am sad.

I also ended up stalking a very 'naice' middle aged lady around the fruit and veg in waitrose the other day. She had barged round me and the lady in front of me with SN in the queue in the cafe because she couldn't be bothered to wait for her to put a food order in- or even ask if she could go past (she asked me instead if I would go past her and I had said no, I was waiting my turn). There was actually a queue in front of all of us anyway for drinks, so the genuinely nice lady with the speech and walking difficulties actually ended up waiting to get her drinks order in behind the lady who had just barged past. I know it is a bit petty, but it really made me upset and angry to see someone being so rude and dismissive towards the lady with SN and clearly thinking this was ok. I saw the future for dd a bit and saw red, So I ended up pacing the fruit and veg area by the cafe until I had the chance to bump into the bargy lady and gently explain why I thought what she had done was wrong. Funny how strange things can really get to you sometimes.

PoshCat Mon 25-Mar-13 09:39:30

Thank you everyone. Still feel very sad for dd2 and myself if I'm honest. I am like you glimmer I mourn the life I think we would have had if dd had been "normal".
Coming here makes me feel less alone. I am grateful that you understand.

LimboLil Mon 25-Mar-13 09:49:38

I know what you mean zzzz. My little man is making developmental steps that I celebrated in my older son when he was 3 and the excitement when he does something new. My other one was very independent by this age and I had settled into the role of facilitator of his growing independence whereas this one, I am still very much involved and needed I guess. But the days when it hits you, it really hits you. Hope everyone's feeling a bit better today.

MummytoMog Mon 25-Mar-13 11:09:37

It's tough - I quite like that I don't do nursery drop offs much, because seeing the other kids who are so much more advanced than DD socially and talking even if they're not as pretty and they can't read or add up

DH just doesn't give a toss, he's really good at celebrating DD for what she can do. I can't decide if he's deluding himself, and I need to be realistic about what help DD needs, or if he's got a good positive attitude and I need to stop running around like a distraught headless chicken. Probably a bit of both.

I carried DD on my back to nursery on Thursday, because she really needed to be close to me and DS was happy to walk instead. The other parents looked at me like I was mad. I couldn't give a shit, it meant I dropped off a happy cheerful little girl, instead of a screaming one who'd been dragged the entire way to nursery. I rather like that she wants to be so cuddly.

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