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How to keep going

(22 Posts)
Msqueen33 Sat 12-Nov-16 10:44:04

I have two girls with autism (nearly 7 and nearly 4). I know autism affects kids in different ways but it's really disheartening hearing people who have high functioning kids talk about their speech. Mainly kids the same age as my youngest. That suddenly they've just come on, or they have good speech. I feel like we're doing most things but it's not moving forward really and I'm disheartened and tired by it all. I'm jealous of those whose kid naturally talked. I'm buying baby toys to get her to request, our stuff is all up high so she has to request. I'm screamed at frequently and I'm so tired. Tired of being jealous, screamed at and envious.

I've brought the Hannen book but I'm not even sure she really wants to talk. And I'm scared this is how it'll always be.

PolterGoose Sat 12-Nov-16 12:15:57

Message withdrawn at poster's request.

Msqueen33 Sat 12-Nov-16 12:35:21

Ha! Can't say I blame her. Frankly I'd be pissed off to. We've picked lots of toys she's motivated by. I need to get my head round verbal communication isn't the gold standard but it adds to my stress especially as she's due to go to a mainstream school and I haven't a clue how she'll do phonics.

In so many ways I'm so proud of her that she says toilet and gets us to go with her to use the toilet.

Salt advised us on moving stuff out of her reach and giving her a choice. That said they also said take her dummy and that's given us so much stress and her to. It's hard not to compare her to her nt peers which I know is really awful.

I'm off to bury myself in the chocolate cupboard.

zzzzz Sat 12-Nov-16 12:37:48

When you say high functioning do you mean "able to manage day to day" or normal plus IQ?

DS has the IQ but didn't have the language for a long time (first yes and mama at 4). I doubt anyone feels he is near nt. He does communicate well now (sorry if this is the wrong thing to say) and is doing well, but there is no "he's nt now" going on grin. He will always need 1:1.

Sometimes I wish we all lived closer. It is SO hard to help with words on a screen.

Be happy. Be protective of what makes you and dc happy and don't let anyone persuade you that it's worth being miserable or just not as happy to gain skills. Children learn most easily when relaxed and happy and you already have barriers to that. Plan to please your girls and yourself and see if life gets better.

PolterGoose Sat 12-Nov-16 12:40:11

Message withdrawn at poster's request.

zzzzz Sat 12-Nov-16 12:40:33

Salt said the same to me angry. They are daft still in many ways.

Rebel.

Pile the toys high and give her her dummy and spend the day in your PJs.

The toilet thing is BRILLIANT.

PolterGoose Sat 12-Nov-16 12:41:36

Message withdrawn at poster's request.

zzzzz Sat 12-Nov-16 12:45:43

Phonics

On iPad montessorium intro to letters (do numbers too ''tis peaceful wonderous), then pocket phonics

This thing in the pic

And a floor mat alphabet to jump on.

zzzzz Sat 12-Nov-16 12:47:41

Look at Montessori bedrooms/school rooms they are made to encourage independence and self help (and easily achieved with what you have).

zzzzz Sat 12-Nov-16 12:49:21

When I say like the toys high I meant on the floor where she can get them

Errppppp Sat 12-Nov-16 13:05:41

No advice but hope you feel better soon. chocolate

Msqueen33 Sat 12-Nov-16 13:17:08

Thanks all. I don't want to normalise her or even present her as nt. I suppose I just want to make her the best she can be. And I know mainstream isn't as accepting of difference as I'd like. Especially ours though I'm hopeful we'll get one or both of the lsa's we have had for my middle dd who also has autism.

I read about how early intervention is key but then see how angry and stressed she gets when pushed to name a colour of a ball. I always feel like I'm doing the wrong thing.

Plus school application time is here and a lot of friends say how excited they are, how nervous and I think of my little one and how hard the first year was for her sister and for me and how I'm going to muster the strength again to fight (we've put in for an ehcp). I never know if I'm doing the right thing.

My main is they're happy. And I see how my youngest gets so frustrated by not talking. She's doing so well at preschool. I suppose the nerves are coming as I know school will be hard. She's going to the better mainstream as there isn't an actual Sen school and she currently goes to a mainstream nursery.

She loves alphablocks on the iPad so we're working on that.

Thanks for everyone's replies. I don't know anyone else who has one child with Sen let alone two and my parents aren't hugely helpful.

Some days I want to chuck in all the crap and just let her do whatever the hell she wants.

zzzzz Sat 12-Nov-16 13:46:10

i have more than one though very different issues.

brightbelle Sat 12-Nov-16 14:31:40

Hi Msqueen I remember we talked on my thread a while ago when I was having one of my down days. I hope you are feeling better now. Not much to advise but from my experience it's easier to do things her way so she's happy and more wiling to engage with you. I also got a lot of advice about putting things out of reach, putting wrong socks on shoes etc from salt so the kid will communicate but honestly none of those worked. Sometime ago I found out that my dd loves looking at me doing housework and so we just did those together and I taught her words as we did those things together so that's a lot less stressful and she learnt new words and new phrases too. That also makes her love to stay with me longer. Maybe try observe what she likes and responds best and take things from there?

Therapists have a lot of theories but we know our child best so if their recommended strategies don't work we can find our own way flowers

Craftyoldhen Sat 12-Nov-16 14:34:18

I have 2 with SEN too. Not really come to terms with it yet, and feel like you a lot of the time. I think it takes a while to accept and be at peace with stuff like this, so it's probably totally understandable to feel the way you and I do.

The speech therapist's advice sounds harsh. My DS's has told us to leave the toys accessible and follow his lead. So if he wants to listen to music and spin in circles we've got to go and join in grin It's more about creating opportunities for interaction rather than worrying about his speech.

zzzzz Sat 12-Nov-16 14:46:30

Putting things out of reach to create a "need" to communicate is very old advice and I've seen it in papers from 50 years ago or more. Not applicable to my young man though I obviously do do it within other support in some form.

From experience of a bottom of the bottom language disordered child I would say language and development follow "happy" here and e have done so much better than anyone predicted so I AM right and they can fuck off

Msqueen33 Sat 12-Nov-16 15:01:41

I think it's the acceptance aswell. My mum doesn't help as I get the impression she's ashamed as her friends are "aghast" that I have two with Sen.

Speech say removing things she likes create opportunities for her to speak which in a way they have done in some cases it really stresses her out.

Sometimes I feel I'm not doing enough, or the right thing.

I've started reading the hannen two to talk book. To give me ideas. Sometimes I feel like the crappiest mum in the world.

Msqueen33 Sat 12-Nov-16 15:02:46

Zzzzzz I think I love you. It's nice to hear that maybe making her happy is enough. Everything else isn't enough.

zzzzz Sat 12-Nov-16 15:05:41

A happy childhood is like gold in the bank. Fill them up with happy and see what happens.

WellTidy Sat 12-Nov-16 15:10:10

I have a 4.6 yo Ds2 with ASD. I don't know how to describe him in terms of functioning, sorry, but until about 5 months ago, he had no spoken language and wasn't toilet trained. He did use PECS at stage 3 level, and had taken to this very well from about 3.7 yo. That took away lots of frustration and was a joy to see.

I had no idea whether his spoken language would come. He was and remains developmentally delayed across the board. I hoped and hoped it would, but never really had faith that it would come. It was so hard, I know. I am surrounded by friends and family with NT kids (ds2 goes to mainstream pre school too, but with a full time one to one support) and felt very, very alone. And then the language came. Slowly, but it has come. He has lots and lots of letter sounds, narrative, expressive and needs based spoken language, but huge amounts of echolalia too.

He is doing phonics at pre school (we deferred him going into reception as we felt he wasn't ready) and is doing well with his learning. That said, he has control and inflexibility issues. I would focus on making your life as easy and happy as possible. I don't think children learn if they're not happy. That foundation needs to be in place. Put the toys she likes within easy reach, and try and engage in her play with them, as I'm sure you're doing already. Watch carefully, was the advice I was given, as DS may be giving me cues that he wants to engage that aren't typical, and I might not be picking up on them. That was good advice, and I've seen changes in him since i started doing this, and accepting that I would have to be incredibly patient and accept that even fleeting interaction would put in foundations for learning, whether that be language or not.

It's tough, I know. flowers

WellTidy Sat 12-Nov-16 15:10:55

Massive cross post!

FrayedHem Sat 12-Nov-16 15:19:14

It's o.k. not to follow the SALT advice. Really it is. Just echoing previous posters, following the lead with the things my 2 with SN enjoy has lead to more gains in communication than trying to force them. I had one SALT who would say DS1 was "playing me" when he would refuse to join in. In hindsight I should have discontinued with her services, rather than sitting through sessions where she continually wound him up.

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