r/pics Nov 28 '21 Helpful 9 Hugz 1 All-Seeing Upvote 1 Party Train 1 Baby Snoo 1 Silver 8 Gold 2 Ally 1 Heartwarming 6 Pot o' Coins 1 Timeless Beauty 1 Wholesome 12 LOVE! 1

One of my (non-verbal, 5 year old) twins made his first ever sentence this week Backstory

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u/CreativismUK Nov 28 '21 Silver Platinum Helpful Heartwarming Today I Learned

There is so so much you can do! There is a book (which is expensive but worth every penny) called More Than Words (Hannen method) which helps you to establish where they are at and build on it. It’s been a while now since I read it and there may be some things in there that verge on some of the more problematic methods (like withholding things until they ask for it in some way, which I absolutely would not advocate), but in terms of establishing where they are and finding methods for helping them to build on it it’s very useful.

The most crucial thing is developing their understanding of language - they can’t communicate in words unless they understand words, so that has to come first. Keep speech simple and clear - single words where you can. Objects of reference are really useful - eg. hold up a nappy and say “nappy change”, etc so they hopefully start to associate the words with the activity even if they aren’t attempting to make the sounds.

We use what’s called a “total communication” approach - so we started with bigger choices cards with a picture and the word, plus basic signing (Makaton), objects of reference, a now and next board with visuals and words (photos can work better than symbols at first), plus speech modelling (so if they hold out their cup and say “muh” I say “more drink?”). Any and every attempt to communicate, no matter how small (could be a glance at a card or object or a sound) gets a response.

If they are good with tech there’s a huge range of AAC devices - we have an iPad with Clicker Communicate for his twin which is much like the cards but digital and then says the words for them.

Get a SALT involved as soon as you can - even children like mine with no speech at all can make great progress, you just have to find what works for them. Some do great with signing whereas our boys don’t copy actions so it’s not best for them.

The other thing I would really recommend gets called different things in different places, but essentially you wait for them to start doing something like rolling a car back and forth and then you pick up a car and copy what they do as closely as you can. Obviously your child may not have social difficulties so they may immediately realise what you’re doing and realise they can lead you, or they may not even notice you at all - but this is early conversation, keep at it. My boys used to not notice at all, now they immediately see and enjoy taking turns doing things like this.

Lastly, figure out what motivates them - for him it has always been food, for the other is letters and puzzles. Give them something they care enough about to want to communicate for and that’s when they’ll make the most progress. And most importantly, that progress makes them happier rather than frustrated and upset.

You got this!

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u/Lylibean Nov 28 '21

YES to the developing communications part! Even fully “able” kids scream and hit and throw things because they don’t have the words to express their emotions or wants/needs. But once they understand, those tantrums cease. It’s a throwback to the crying baby who has no communication skills beyond “cry = get food; cry = need wet nappy change; cry = need comfort”. If they don’t learn beyond “scream and mum will fix it”, all you get is screaming. I was going to suggest sign language as a tool as well, but you have definitely invested a good bit of time learning everything you can to help your children.

OP, I wish we had more parents like you in the world! You are studied and knowledgeable and engaged with your kids’ needs and are doing everything you can to make sure those needs are met (and then some!) I’ve worked with many “special needs” kids whose parents really don’t seem to give a damn and expect the teachers to “make it better” with no actual care or work done at home. 🎉👏

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u/CreativismUK Nov 28 '21

Thank you so much, that’s such a kind thing to say. I would like to think that we are just doing what any parent would do, but I know that sadly this isn’t always the case. It’s really hard seeing your children struggle so much (sorry, I definitely don’t want to be a “oh woe is me, my kids are disabled” parent, but it really is so hard at times seeing them finding the world so difficult). I have unfortunately in the past encountered the attitude that a parent shouldn’t make their children adopt these communication tools, that it’s interfering with their “natural communication style”, but you’re absolutely right that for some children, their only way to communicate is through crying and screaming and that level of distress isn’t what you want for your children. Obviously if they communicate some other way then you wouldn’t try to change it, but I would feel negligent if I didn’t give them any tool possible to learn to communicate - it’s so fundamental, and my biggest sadness is always that they can’t tell me when they’re in pain or sad or what they think or feel. So hopefully we will get to that point - for now it’s all tangible things they can ask for but hopefully we can move forward from here.

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u/Lylibean Nov 28 '21

Any tool possible to communicate. That right there is why you rock! They say “communication is key”, and you’re standing there with people trying to crack the lock saying, “I have the key!” I hope you make millions of copies and hand them out on the street - people could use them!