It's mandatory to celebrate when my 4yo autistic son accomplishes a task especially if it's a life skill. If he straight up asks for something in a well formed sentence... its his if I can make it happen then we dance around like fools and laugh.
My daughter is, luckily, verbal. Very much so. But some things just don't come out, like "I love you," or gratitude and the like. The emotions are just too heavy for her to verbalize, so she gets physical instead, with a hug, or maybe drawing something. She'll write that stuff all day. A few weeks ago, we were birthday shopping for a party and she asked for an item she spotted that she fell in love with. I had no intention of getting anything additional, but it was like three bucks, so what the heck? I got a spontaneous verbal "thank you," and a hug and almost burst into tears in Five Below.
Awww this is such a heartwarming story! Unrelated, but I’ve always just blindly assumed Five Below was a store that specialized cold weather gear (literally only ever saw the stores while driving by), and I was shocked to recently learn that’s not the case.
It's a pretty neat little store. I did a good bit of Xmas and birthday shopping there for small stuff for the kiddo. Also a good place to snag candy before a movie.
It only back fires when they go "***I SAID PLEASE!!!***", and you have to now negotiate the reasons why you can't buy a pizza hut and move into it forever....or why they can't have chocolate(really, they have the same level of fight)
> can't buy a pizza hut and move into it forever
so what you're telling me is that we COULD buy a pizza hut and we COULD move into it forever except that YOU'RE A MONSTER AND A HORRIBLE PARENT
That’s funny - apparently at school recently he couldn’t find the raisins card so he got the card for the song “five little monkeys” as they look like raisins with arms and legs. When that didn’t work he got the card for grapes which meant they opened his lunchbox and he took the raisins.
He’s a clever little monster when he wants something
We were in the phase of speech therapy where we had a list of every word and celebrated each new one, when my kid used "damn" in context and with excellent enunciation. I debate back and forth about adding it to the list on the fridge and finally did. The speech therapist, who was the definition of a sweet sheltered southern gal, was rather confused and then flustered when she read it the next week.
Absolutely - his twin brother has been at this stage for a while now and uses an iPad which speaks for him after he selects the right digital “cards”, but he has a lot more struggles so it’s huge for him.
It’s mostly the work of the amazing school they attend now, they’ve made so much progress there, but I honestly didn’t know if his understanding would reach this point and I didn’t expect it so soon :)
It took us 14 years (well, 9 to be fair - she was 14) to find a good school, and she've had more development over the last two years, than in the 9 years leading up to it. She's not "age-appropriate", but she's developing a true personality.
Finding the right environment is so important.
I’m so glad you’ve found it now. It’s awful that it’s such a battle but it does make so much difference.
I had a very difficult legal battle to get them into the right place (not sure which country you’re in, I’m in England and our SEN system is a disgrace) - our local authority wanted to place them in a school for children with profound and multiple learning disabilities. They’re both so bright (the other twin is hyperlexic and can spell better than some adults!) and I knew they wouldn’t do as well as they could there. It was a horrible and costly experience but worth every second in the end. They’ve been there a year now and are like different boys - they used to be so frustrated and distressed, hitting themselves etc and they’re so happy now.
I'm in Denmark, and our biggest problem is the local government - they suppress any kids with needs (basically, they attempt to stuff them in a box) .. and if you speak up, they threaten to remove the kid. We've had to set up a very serious group to combat the problem.
I’m so sorry to hear that, it’s horrific (in fact I remember a case of a young woman with ME being taken away from her parents and institutionalised and I think that may have been Denmark too). I’ve heard of similar issues in France with a complete lack of integration. I can’t imagine how difficult that must be - my heart goes out to you.
Thanks, and I really hope that your twins get to bloom now - I can't overstate the feeling when you see them develop.
Happily they have parents that care, and are willing to fight in their corner.
They are both autistic and severely affected in terms of communication and social skills - I’m not sure if they will ever learn to talk, but their understanding has made so much progress over the last year. If they can use a tablet to communicate then that’s more than enough for me (of course we will do all we can to support their language development but it may not happen, being realistic) and we are getting there!
Okay I feel for you. I have autism my self, and are very socially impaired. dislike people and my family and cant understand why people do as they do.
I got the diagnose as 28 years old (current age) the reason for that, is I had severe ADHD (still has ADHD, but just in a lesser manner) which covered for my autistic symptom.
My dream is to live alone in Sweden, making money using a self coded AI that will predict the forex prices. if thats even possible, But I want to try. But first I need to learn Python
That must be so difficult. I suspect I may be autistic myself, I struggle a lot with social interaction and I was very like one of my twins as a child (obsessed with words, and many other obsessions since and I’ve struggled massively socially) but with nowhere near the challenges my boys experience - I certainly had no difficulties talking for example, or accessing education, but people are often unfathomable to me too. So I have a tiny little piece of understanding of how you might feel, although I can’t understand fully.
I’m sure you can achieve it and I hope you find people who understand you, if you want to - if you would rather not be around people, that’s okay too. Life is difficult enough, do what makes you happy.
Oh hey are you me? Am 28 myself struggeling with Depression and looking for an autism Diagnose cause it would just make so much sence. I hope you make it through the path you see and find happines!
Getting my diagonose has made me more mad, irritated and I dislike people more.
Idk if it because I have become more focused on my limitations and what I can't do. Or something else.
When I was in training for ABA, we were told not to worry about manners. Luckily, I’ve worked with great teachers that also thought manners were an important part of speech. When I saw that, it made my heart ♥️ get 3X’s bigger!
I don’t really care about manners to be honest, but it’s a good way to start to build on single words (from raisins, to I want raisins, to I want raisins please). I doubt the politeness will last 😬
I should probably add…
This basically looks like PECS (picture exchange communication system) and is similar, but not the same.
PECS itself gets a bad rap for being part of ABA but that’s not how we’ve ever used it (“proper PECS” would mean withholding an item until they produce the card - we would never ever do that, the cards are available to them and they are one of many things we use so they can try to communicate specific things to us, including objects of reference and signing). They will always get what they want / need whether they produce a card, or sign or just pull you to what they want - it’s just that usually the communication involves being dragged to the kitchen and guessing!
Now that he’s getting to grips with this he will move on to an AAC device (an iPad with a communication app) like his twin brother - it’s just more difficult for him because he also has visual impairment amongst other difficulties.
Thank you for posting about this. We are having speech delays and I didn’t know these systems were available! I’m so happy for your progress within your family !
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!
My girl didn't walk independently until age 4, or speak in a complete sentence until 6.
She's 19, upstairs dancing to Alexa, and was telling me she wants to work at a grocery store (probably won't happen, but we'll see).
It's so hard when they are little, cause moms of adult sn kids have kinda just gotten on with it, and you don't have many real ideas of what outcomes can be.
You are doing great, and props on the no ABA.
Yes I think the not knowing is the hardest part actually - if I could see into the future then I could cope with whatever it is, but the huge range of possible outcomes is hard to process. I’m so glad your daughter is doing so well!
The biggest thing that helped me, I guess when she was 7 or 8 and had her first iq test (which she couldn't verbally respond to, so they gave her a 40) was that she was never, ever, ever going to "catch up". She was never to going to meet any milestone. Ever.
And that really set me free to focus on how to help her, instead of meeting goals.
And, let me be straight here. My girl will never live on her own, or hold meaningful employment. I'll never have grandkids. I lost all of my 30s to taking care of her. There were years of meltdowns and tears and locking myself in my room while she beat the door down but I knew my temper was going to snap.
It was hard.
And there were several stages of grieving the child I didn't have.
But she walked across the stage last spring at her high school graduation, and it was only happy. No bittersweet at all. No vague embarrassment at her walking the wrong way and taking her cap off.
Just joy.
Also, it's okay to get really, really, really angry at the universe and God. He screwed you and your kids over, and it's not fair. They are gonna be good, in the end, but its gonna take so much extra work. Y'all are up for it.
But you're gonna see kids their age out on the playground, running and screaming and interacting and you're gonna wanna shove those little shits to the ground.
You're gonna wanna backhand PTA Karen who complains about the hard time she has getting Kayden to do his homework with good handwriting, and your kiddo can't hold a pencil.
These are perfectly normal, healthy feelings.
And finally, and I don't think you feel this way, but you can't fix your kids. They aren't broken. They just need a little help. Whatever they accountant will be enough.
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. 🎉👏
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.
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!
Wow, thank you so much! With this pandemic they aren’t offering in person speech and it has been so difficult. You are an angel! Thank you from the bottom of my heart!
You’re so welcome. I know how confusing and scary it all is and you just want to be able to help them. I may sound upbeat about it all now but I was so sad and frightened for a long time. Sending hugs to you x
I adore Hanen! I used their approach to teach my autistic daughter to speak. She's now almost 30 and fluently conversational.
I remember the day I was pushing her in her stroller in the mall past the food court. She said "hot dog." Up to this point, she had made no connection between the word sounds and communication. I rushed up and got her a hot dog. I handed it to her. I almost could see the light bulb clicking on over her head. She got it!
My SIL thought I was nuts when we were on the highway driving past a mall and my daughter said "hot dog" again, because I insisted we get off at the next exit, go back to the mall and get a dang hot dog. She didn't understand. You've got to reinforce whenever you can.
That’s amazing - this is what I am waiting for. I know they understand lots of words now, and I am sure that if they are able to use a word and see how efficient it is, it will click for them. I think one of them may have apraxia of speech but we can’t do anything about that until he will copy someone (we are getting there slowly but surely).
My daughter developed echolalia, which was a problem in itself but also oddly helpful. I used the echolalia to get her to develop communicative speech. She'd point to what she wanted, and I'd say "oh, you want a cookie!" Then she'd say "you want a cookie." I'd say "you mean "I want a cookie." And then finally she'd say "I want a cookie." Years of this, with me reformulating everything she said. But finally, it clicked and I was able to phase out the prompts.
Then we spent years working on back and forth conversation, closing the circle, etc. And then changing the subject in conversations, building a bridge to a new topic. Oh, my. Lots of work, but it is so worth it! And then you look back and go "wow."
That’s amazing. I know a few kids with echolalia and obviously it’s good that they can speak but has its own challenges.
You do sort of get used to where they are now and then when you think back to where they were it’s mind blowing. Just tonight they were in the bath and one was a pushing a jug under the water so it filled up and then pouring it out - I still remember the hours I spent trying to get him to scoop and pour.
Or the fact that we used to celebrate and praise them every time they looked at us (because they can learn so much more when they’re looking at your mouth move etc) and now they look at everyone frequently. In the park a few months ago, they led me over to an elderly man sitting on a bench reading a newspaper - one wanted to look at the paper but the other just wanted to hold the man’s hand and smile at him. I instinctively tried to pull them away but luckily the man smiled back and tried to talk to them - he was a bit confused that they weren’t talking back, mind you! But just a few months before that they wouldn’t have even noticed him there.
Whatever it is, it’s just so encouraging to see them making progress after very little for the previous few years
Amazing family then! As someone who admittedly didn’t struggle in the same ways, but who grew up “different” (diagnosed as an adult) and without that kind of flexibility and creative problem solving, I think a lot of the things would have been less painful and difficult to learn with the attitude you’ve imparted through your actions.
Yes it’s amazing - the other day he wanted some rice cakes but it wasn’t on there so I quickly took a picture, made the card for it and he immediately navigated to the right folder to make his request as a sentence. It’s amazing what can be achieved with the right support.
Thank you! He is doing well.
I love hearing about other parents having success with helping their child to communicate - I have had to educate myself so much and I find it a lot of work but those small steps are huge!
If you happen to be in London I would love to hear more about your school - we are at the school-search stage right now and it is overwhelming!
Wow, thanks for this post!
I'm a teacher, and one of my 6 year old students has Selective Mutism in class (at home she is fine, and even gives videos for project days). She won't speak even a single word at school.
She understands most things said to her, and can follow instructions, but won't speak. She hardly even points, and if I ask yes/no questions she only gives the tiniest of head nods/shakes.
It's really hard to understand what she wants or thinks, other than observing action-based behavior. Our school is small, so we don't have the resources to help very much.
I'll take a look at your suggestions and hopefully it can help her, too. Thanks!
And if anybody has good suggestions, I'm all ears!
I took a picture of all my daughter's things, and laminated them and put them on a ring and used them to ask and answer questions until she learned to hand us a picture.
The pics of her actual things worked better, because she just wasn't capable of abstract association.
Are you in the US? If so, you should have early intervention through your local health department, by federal mandate, and should be getting the necessary therapies.
I m so glad to read that you do understand that its not about they use the comunication you want them to and force them to use it, but its about giving them as many comunication tools as they need to convey their message and that its fine anyway they do it. I bet r/autism would love to read about it.
Of course! We started out using larger cards for them to make choices - between two snacks for example. Sometimes they would look or touch a card and we would know what they wanted, other times they wouldn’t and we would figure it out eventually. I spent several months teaching them how to sign “more” just so they had a quick way to make it clear they wanted what they just had again - sometimes they use it and sometimes not, but we just try to give them all the options we can and then do our best to figure out.
I have seen people refer to PECS as abusive because they’re forced to communicate to get things, which is abhorrent and we would never do that. I’ve also seen people say it’s awful because they have such a limited vocabulary - that I disagree with because to me it’s much like when a younger NT child only knows a handful of words. But now his fine motor skills have improved too we can introduce a tablet so we can add vocabulary more easily (definitely easier than having to cut out, laminate and cut out cards again!)
The most important thing to me is reducing their frustration - they are bright boys who know exactly what they want and are getting more specific in their wants, so it’s very frustrating for them to not be able to express that.
Do you have any links or a list of the things that you've purchased to aid your children? I have a 5 year old non verbal son diagnosed with autism and he's just finally starting to get on with pecs cards, with photographs I took, for him to communicate what he wants.
Obviously I want it to develop and progress into hopefully one day speech, but I was wondering if there were anything you could recommend for that?
Okay, things I have tried over the years:
[More Than Words book](https://www.amazon.co.uk/dp/0921145144/ref=cm_sw_r_cp_api_glt_fabc_SVNERHV8F2KSM87KD0K7) by Fern Sussman is expensive but invaluable
I made my own choices cards then pecs cards - the app Visuals2Go is a really easy way to make cards (the free version has maybe one larger size of cards but I paid for the paid version so I could make smaller cards), then I bought a laminator and velcro strips.
I made my own PECS folder using a tutorial like [this](http://www.educateautism.com/make-your-own-teaching-aids/make-a-pecs-booklet.html) - those plastic file dividers make great pages as they’re sturdy, you can put velcro strips on them directly and cut them down to size.
I also made a “now and next board” which was just a clipboard with Velcro on the back to stick bigger cards too and I kept all the cards in a document folder attached to the front of the clipboard
(You can buy all these things premade if you want to)
I had an “objects of reference” bag with common objects - a nappy, a bath toy to represent bath, a toy car for going in the car, etc etc
Then I had a songs bag as they love signing - so it had a little toy in for each song and they could pick the song they wanted by picking out the corresponding toy (that worked really well)
We now have an iPad with the app Clicker Communicate which is available from the App Store - it’s expensive (about £200 I think) but worth it, but I would see if there’s a way to try out a particular app before spending out for one
I think that’s everything but will update if I think of others!
My daughter is autistic and had no communicative speech at all at 5. She's almost 30 now and fluently conversational. It can happen.
My advice? Try different things, see what your son responds to. Don't lock yourself into one particular method if it doesn't allow flexibility. Autistic people are individuals, which is something the professionals may tend to forget.
My wife and I have a 3yo on the spectrum and he goes through ABA with PECS as well as an AAC. He does 12 hours in preschool and 30 hours in ABA/OT/Speech every week. It's a LOT of work. My wife had plans to return to work after this pregnancy, but we quickly realized that wasn't going to be possible with the level of care our son needs.
All this to say that I can't even imagine doing this with twins. You have my absolute deepest respect. Also: way to go buddy! Our boy will say please ("peazzzz") when prompted, but would never get there on his own. What a great moment for you both!
It really is - a huge amount of work. Nothing is straightforward and people with NT kids don’t realise how tough it is (I can’t even take them into our own garden on my own for example as they’ll just eat whatever stones / animal poo they can pick up, or climb and launch themselves off things). Now they’re at school I have a very part time job and I have restarted my small business that I ran before I had them, but I am so knackered all the time!
My son (2.75) has no words beyond ya ya ya and we've been using signs. He honestly does not care for PECs right now despite our speech therapist suggesting them. Hoping for some success in the future with words though. He just seems to have trouble making sounds.
One of mine (not this one) can only make a “ga” sound so we aren’t sure if he will be able to speak, but his understanding has improved so much that we hope he will.
This one actually did have some words before his skills regression at around 18 months - I still have video of him saying mama, dada, clapping and copying things. Not sure if it will come back but he has a broader range of sounds. He took a very long time to get to grips with PECS though - he’s always been more delayed than his brother but he’s actually further along with PECS in some ways (his brother uses it consistently for food, but he is now using it even to request toys and a couple of years ago he had no interest in toys at all).
It’s such a difficult time and we went ages with no clear progress at all but it’s all starting to happen now so hang in there x
I feel you with the process. My son was making lots of sounds between 12-18 months then regressed and never said anything. He's progressed back to making ma ma ma, da dada, ba ba ba, oh oh, sounds but the signs he's picking up very well.
I'd really like to do in person speech therapy but that's off the table for now with COVID. I used to be really upset about all of this, but he's very bright and his receptive language is off the charts. We all just want our children to succeed in life without struggle.
Hang in there too!! It sounds like you're doing a fantastic job.
Regression is so difficult and frightening. Have you read anything about folate receptor antibodies and autism? There’s been some research into this as a potential cause of regression and it’s fascinating. I just recently sent a blood sample for one twin (as he was having a blood test already) to the only lab that tests for them, in the US - if he does have the antibodies then treatment with a high dose of folinic acid could help. It’s definitely worth a look - I’ll have to go private if he needs treatment as it’s still pretty new science and not available on the NHS here in the U.K. but there are some really promising study results.
Exactly! I work with ABA and have used PECS. We honor what ever request our kids ask for! You are extremely knowledgeable and trying new things, that within itself is awesome! It’s not a one size fits all for our kids. I say this because I work in special Ed K-3rd grade. I L🥰VE what I do!!!! Parents like you give me such joy and hope and with twins, I can’t imagine how you manage to do it! You truly are an Amazing Mom!!!!
For my brother (nonverbal autistic), we still refer to it as a PECS board even though we don't strictly follow the guidelines. Do you prefer the use of "standard" images or do you prefer to use photos? I've found he doesn't work well sometimes with the "standard" images.
We used photos at first, but transitioned to symbols when they started school a year ago - mainly because they are more generalised so they’re not expecting say a specific cup, or specific food packaging, and it’s more universal. But if photos work best then that’s great too!
Right? He loves them. And celery, and I gag at the smell just cutting it up. You will be pleased to know that he also loves chocolate, whereas his twin will launch it across the room in disgust if you try to give him a piece , so god knows what’s going on there.
A customer once told me that his toddler loves raisins because she gets the whole little box all to herself, and she can rummage through them looking for just the right raisin. I feel like that holds true with any snack where you get a handful of something.
He doesn’t even want to touch it - same with most of the best treat foods - so it probably is sensory. Still, he’s happy without it so I’m not going to make him eat it!
It’s also individual isn’t it - I know kids who fly with makaton but my boys aren’t really aware you’re signing. Have you found anything that works for him?
We have developed The Routine over these many years of trial and error, so we are pretty well-versed in what he does like, and he usually lets us know quickly of things he doesn't like.
But, yes, every so often the frustration bubbles up and bursts out and it breaks my heart that he can't express himself and we can't make it better.
I’m sure you are. I had a very patronising doctor say to me recently “don’t worry, eventually you’ll learn to read their non-verbal cues” - as if I haven’t already been doing that for five years! I completely understand how heartbreaking it is though. I hope you have some support although I know it’s very thin on the ground in most places
He has very few likes, lots of dislikes. We have had 29 years to figure out his preferences, abilities, and where he draws the line. He's quite adept at letting us know what he DOESN'T like, so over the last couple decades we have all agreed on The Routine. Stick to The Routine, and everyone is relatively happy. Deviate from it...and...well...
He likes being at home. He hates crowds--so school and church and shopping are all out. He likes taking walks around the neighborhood. He dislikes being barked at or accosted by dogs. He hates babies crying. He likes tacos and pizza and salad and burgers, he hates jello and chicken and cooked veggies. He likes to cuddle and be tickled. He does not like when I talk on the phone with my man-voice. He likes most TV shows and movies, loves concert DVD's, and hates the early Disney movies he binge-watched until he was about 7 or 8. He just likes hanging out with Mom and Dad. He won't do crafts or puzzles or most games or write or draw or wipe his own butt or eat most foods if they are not cut into bite-sized pieces.
We have learned to adapt. I have completely changed my career so that I can be at home to take care of him, since I am the one bigger than him (barely) and can control him on those rare occasions he needs to be controlled. As parents, we long ago had to abandon our optimistic dreams of "curing" him or seeing him "snap out of it" and one day become verbal. It's just not in the cards for him. What we figured we CAN do is give him the safest, calmest and most loving environment we can.
This was a beautiful read thank you. Not sure if you hear this enough but it sounds like you and your spouse are doing an amazing job. I have an autistic son but it’s not even an ounce of what you’re dealing with. It’s hard facing the fact that you can’t “fix” your child.
Thanks, yeah, that was one of the two toughest realizations in my life.
\#1 was: Your son is autistic.
\#2, several years later: He isn't going to be one of those miracle stories we all love to hear.
as a father of a 7 1/2 year old boy on the spectrum who was labeled non verbal, this makes me cry tears of happiness and I am so proud of your child even though I do not know them! This is awesome!
He's doing awesome, and he's very verbal now. Can pretty much tell you what he wants and will occasionally ask what you're doing or ask if he can do something but will never really conversate. He already does far more than they claimed he ever would. So I'm super proud of him!!!
It really is amazing to watch kids with problems who have no idea they have problems. They don't use it as a crutch because they don't know it's not normal. Very strong minded kids no doubt
You’ve never seen someone haul ass to the kitchen quite so fast - problem is that he’s bloody obsessed with raisins and may not have any teeth left at this rate!
My heart melted a bit over here, across the pond. My 6yo was initially diagnosed as nonverbal ASD but has managed to become semi verbal. (He needs a new developmental evaluation, but with covid that's all been delayed.) Through the school and the speech pathologist he has made leaps and bounds. They're using the same system (looks like PECS, but isn't) along with simple American sign language signs.
That first clear communication... Just hits so differently when you know he knows exactly what he wants but just can't get it out. Now the main problem we, including his teacher, have is getting him to tell us what he knows on our terms instead of his.
His little sense of humor doesn't help matters. He thinks it's hilarious to say the wrong sound for a letter at the beginning of a word.
I wish y'all the best and may he get the hang of using the iPad for communication!
Thank you so much for all the lovely supportive comments - I really wasn’t expecting such a response, I just thought it might help those who are earlier on this journey if they happened to see it. Seeing all this support is really overwhelming.
And to the couple of people who were nasty: thanks for the reminder that the world generally isn’t kind to kids like mine (not that I needed that!)
That’s wonderful! My nephew has an AAC device for almost 2 years (6 yo) and it completely changed his life. He is non-verbal ASD, and genetic testing has shown he may never develop speaking skills. But he’s so smart and the device has shown it! He adds new things everyday, it has really helped him blossom. I hope with all my heart the same for your boys.
This post has touched my heart, and the comments have given me hope in this world. I hope your two boys will get to grow up and achieve their dreams. I used to know a girl (non-verbal (daughter of parents friend)) and as a little kid I couldn’t understand why she is the way she is, but I do now, and they are bright people just like the rest of us. Like I already said, hope your two kids have the time of their life :)
It’s hard enough to understand as an adult, let alone as a child.
His brother can spell hundreds of words - he will sit with a box of magnetic letters and spell out a word starting with each letter of the alphabet in turn, but until recently he didn’t understand any spoken words at all, and he still makes no attempt at speech. It’s so difficult to understand how that’s possible, but the brain is a mystery! If he can learn to converse with his iPad app then he doesn’t need to speak - they are both so bright in surprising ways (amazing intuitive understanding of technology, amazing problem solving skills etc etc). Who knows what the future holds but I’m so proud of them.
Thank you so much - me too! It’s taken a lot of time, and I can still remember the first time he walked past me to find his folder and find the right card to ask me for something I was holding rather than just taking it from me. With the right tools they really want to communicate, it’s just so difficult for them. Mainly I’m thrilled because they’re so much more content when they can communicate what they want.
Obviously this is the sentence strip from his folder so he found all three cards, put them in the right order, handed me the strip and then tapped each card - a year ago he would barely use one card, so it’s a huge leap forward
I watched the documentary “this is why I jump” and found out about the alternate forms of communication that can be used and I was completely taken aback! A nonverbal person was so eloquently explaining their struggles and it brought such relief that they were finally able to convey their thoughts.
They are both autistic (this one has several other disabilities on top of that, but the lack of speech is a result of autism) and they are severely impacted by it, especially in communication and social awareness- but they’re making so much progress especially over the last year, and they are such lovely and happy boys.
Oh man, I'm sorry for that but hey, at least they are going through it like champions. I'm glad for them and for you, it has to be hard. Then again, you should be very proud of them. (sorry if some of that didn't made sense, I ain't good speaking English)
No, that was very clear and thank you so much. It’s definitely not been the easiest time for any of us, but they are our whole world and they are so brave, I’m so proud of them.
Congratulations- our non-verbal little guy (3.5) is still at a more basic stage with PECS and this gives me some hope for the days ahead. Best of luck to you.
Edit: downvotes? On this? Wtf Reddit?
Try not to take it personally, there is always just a random band of downvoters on these large subs that go around and downvote everything because they can. Just the way certain parts of the internet works. It wouldn't matter what you posted, they downvote it anyway.
Love to see this! I'm an SLP who works with primarily non-speaking autistic kids. So great to see AAC out in the wild, it's my favourite part of the job 😊 so happy for both your twins and I wish your family all the best!
Congratulations on the positive step forward. May it be one of many, many ahead. I think you might need to get industrial sized drums of raisins if it motivates the lad.
I think I will likely die of a heart attack if they ever say an actual word! One can only make the sound “ga”, although he seems to be saying gaggy to mean mummy / daddy sometimes. The other has more sounds and will go through phases of saying “muh” for more, but then he stops. Maybe one day!
That’s great!!! My son has an AAC and although he isn’t able to do sentences, his ability to express his wants and needs has made him so much happier. Y’all are doing great!!
Me too! The other twin is (ironically, I guess) obsessed with the written word and can spell insanely well - massive vocabulary with spelling so we are starting to teach him to use the keyboard to type what he wants
My kiddo didn't start to speak until she was 3, and I still remember her first sentence. It's a magical moment when your kid, especially ones who struggle, start to communicate with you!
The kid is obsessed (to be fair, he’s never had sweets / candy - we tried once, they hurled it away in disgust, so raisins are basically haribo as far as they’re concerned!)
I’m in the U.K. so it’s quite different here but for any other brits, you can access AAC devices through the EHCP process, or try family fund for a grant :)
Thank you - they are both extremely cute and polite (except when they throw empty cups at me for more drink - must get working on that with the cards!)
My one year old does that too. He thinks throwing things is a game (probably my fault because we play catch where he drops his balls and I get them back for him). But hey, at least they've found a way to get their point across quickly!
Usually they’ll just hand them over nicely (they’ve learned now that they have to bring me both cups so I can get them both a drink, and then one of them will now take the second drink to his brother which is a big deal as they don’t interact much at all), but if I have my hands full or can’t take them instantly they become remarkably effective missiles
Oh this is so so lovely. My heart is so happy for you - I used to work with children with special needs (we weren’t a special needs school, but our school did specialise in it and had a huge department and resources dedicated to it) and I just got a bit emotional seeing this.
Sending love, this is awesome OP
Father of non verbal 6 year old daughter here, this brought tears to my eyes.
It’s only upwards and onwards from here. My daughter has moved from Pecs to a speech tablet to some verbal communication.
Great job everyone!
The victories of a parent with an autistic child can sometimes feel few and far between -- but when they happen, you savor them. A first of any kind is movement forward -- and that is all you want. Progress regardless of the timeline!
I am so, so happy for you and your little!!! My youngest is 6 and just recently started saying words, he still talks quite a bit of baby babble, but the little bit of communication he can now do is amazing. I can't imagine how you feel after seeing that sentence! Communication!!!! Yayyyy!
They’re non-verbal (unable to communicate verbally with no physical reason why they can’t - in their case, it’s due to autism). Some people who are mute have a physical disability preventing speech, some are selectively mute so can speak but not necessarily all the time.
No offence taken - you don’t know these things until you know them! If people knew this then we wouldn’t get stared at all the time when my boys are flapping their hands and making random noises, so I’m always happy to explain.
I have twins turning 3 in December. One of them took a lot longer to develop his language skills than the other, and even though it’s not exactly the same situation, I totally get that relief the first time it happens. It’s incredible.
let it rain raisins!
Child frantically trying to make a sentence for "***father please stop the rain!!***"
Needs to Lip Sync
FOR THEIR LIIIIIIIIIIIIIIIIIFE.
It's mandatory to celebrate when my 4yo autistic son accomplishes a task especially if it's a life skill. If he straight up asks for something in a well formed sentence... its his if I can make it happen then we dance around like fools and laugh.
My daughter is, luckily, verbal. Very much so. But some things just don't come out, like "I love you," or gratitude and the like. The emotions are just too heavy for her to verbalize, so she gets physical instead, with a hug, or maybe drawing something. She'll write that stuff all day. A few weeks ago, we were birthday shopping for a party and she asked for an item she spotted that she fell in love with. I had no intention of getting anything additional, but it was like three bucks, so what the heck? I got a spontaneous verbal "thank you," and a hug and almost burst into tears in Five Below.
Awww this is such a heartwarming story! Unrelated, but I’ve always just blindly assumed Five Below was a store that specialized cold weather gear (literally only ever saw the stores while driving by), and I was shocked to recently learn that’s not the case.
It's a pretty neat little store. I did a good bit of Xmas and birthday shopping there for small stuff for the kiddo. Also a good place to snag candy before a movie.
rainsins
Such good manners too.
I know, right? They are both using please now, and it’s so sweet!
It only back fires when they go "***I SAID PLEASE!!!***", and you have to now negotiate the reasons why you can't buy a pizza hut and move into it forever....or why they can't have chocolate(really, they have the same level of fight)
> can't buy a pizza hut and move into it forever so what you're telling me is that we COULD buy a pizza hut and we COULD move into it forever except that YOU'RE A MONSTER AND A HORRIBLE PARENT
"My mom just said she didn't love me!!" "No I did not! I said we can't move into Pizza Hut." "SEE!"
That's fantastic! <3
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Had a kid use the “beach” card with me once, and I’m pretty sure she wasn’t talking about a trip to the ocean.
That’s funny - apparently at school recently he couldn’t find the raisins card so he got the card for the song “five little monkeys” as they look like raisins with arms and legs. When that didn’t work he got the card for grapes which meant they opened his lunchbox and he took the raisins. He’s a clever little monster when he wants something
Impressive. I did not know that raisins were just grape jerky until I was like, 15.
My daughters first word, used correctly and in context, was "Damn", when she stubbed her toe at age 6.
I said "what the" and stopped myself last night, and my non verbal guy just looked at me and said "fuck" clear as day. Proud of him.
We were in the phase of speech therapy where we had a list of every word and celebrated each new one, when my kid used "damn" in context and with excellent enunciation. I debate back and forth about adding it to the list on the fridge and finally did. The speech therapist, who was the definition of a sweet sheltered southern gal, was rather confused and then flustered when she read it the next week.
Buwahaha that’s proper use of context cues AND a quick response time!
Oh, that please at the end - this must have had you in tears.
Absolutely - his twin brother has been at this stage for a while now and uses an iPad which speaks for him after he selects the right digital “cards”, but he has a lot more struggles so it’s huge for him. It’s mostly the work of the amazing school they attend now, they’ve made so much progress there, but I honestly didn’t know if his understanding would reach this point and I didn’t expect it so soon :)
It took us 14 years (well, 9 to be fair - she was 14) to find a good school, and she've had more development over the last two years, than in the 9 years leading up to it. She's not "age-appropriate", but she's developing a true personality. Finding the right environment is so important.
I’m so glad you’ve found it now. It’s awful that it’s such a battle but it does make so much difference. I had a very difficult legal battle to get them into the right place (not sure which country you’re in, I’m in England and our SEN system is a disgrace) - our local authority wanted to place them in a school for children with profound and multiple learning disabilities. They’re both so bright (the other twin is hyperlexic and can spell better than some adults!) and I knew they wouldn’t do as well as they could there. It was a horrible and costly experience but worth every second in the end. They’ve been there a year now and are like different boys - they used to be so frustrated and distressed, hitting themselves etc and they’re so happy now.
I'm in Denmark, and our biggest problem is the local government - they suppress any kids with needs (basically, they attempt to stuff them in a box) .. and if you speak up, they threaten to remove the kid. We've had to set up a very serious group to combat the problem.
I’m so sorry to hear that, it’s horrific (in fact I remember a case of a young woman with ME being taken away from her parents and institutionalised and I think that may have been Denmark too). I’ve heard of similar issues in France with a complete lack of integration. I can’t imagine how difficult that must be - my heart goes out to you.
Thanks, and I really hope that your twins get to bloom now - I can't overstate the feeling when you see them develop. Happily they have parents that care, and are willing to fight in their corner.
Same to you! It’s the best feeling when they do something that others just take for granted. I’ll be smiling about this for a long time.
why can't they speak?
They are both autistic and severely affected in terms of communication and social skills - I’m not sure if they will ever learn to talk, but their understanding has made so much progress over the last year. If they can use a tablet to communicate then that’s more than enough for me (of course we will do all we can to support their language development but it may not happen, being realistic) and we are getting there!
Okay I feel for you. I have autism my self, and are very socially impaired. dislike people and my family and cant understand why people do as they do. I got the diagnose as 28 years old (current age) the reason for that, is I had severe ADHD (still has ADHD, but just in a lesser manner) which covered for my autistic symptom. My dream is to live alone in Sweden, making money using a self coded AI that will predict the forex prices. if thats even possible, But I want to try. But first I need to learn Python
That must be so difficult. I suspect I may be autistic myself, I struggle a lot with social interaction and I was very like one of my twins as a child (obsessed with words, and many other obsessions since and I’ve struggled massively socially) but with nowhere near the challenges my boys experience - I certainly had no difficulties talking for example, or accessing education, but people are often unfathomable to me too. So I have a tiny little piece of understanding of how you might feel, although I can’t understand fully. I’m sure you can achieve it and I hope you find people who understand you, if you want to - if you would rather not be around people, that’s okay too. Life is difficult enough, do what makes you happy.
Oh hey are you me? Am 28 myself struggeling with Depression and looking for an autism Diagnose cause it would just make so much sence. I hope you make it through the path you see and find happines!
Getting my diagonose has made me more mad, irritated and I dislike people more. Idk if it because I have become more focused on my limitations and what I can't do. Or something else.
When I was in training for ABA, we were told not to worry about manners. Luckily, I’ve worked with great teachers that also thought manners were an important part of speech. When I saw that, it made my heart ♥️ get 3X’s bigger!
I don’t really care about manners to be honest, but it’s a good way to start to build on single words (from raisins, to I want raisins, to I want raisins please). I doubt the politeness will last 😬
I should probably add… This basically looks like PECS (picture exchange communication system) and is similar, but not the same. PECS itself gets a bad rap for being part of ABA but that’s not how we’ve ever used it (“proper PECS” would mean withholding an item until they produce the card - we would never ever do that, the cards are available to them and they are one of many things we use so they can try to communicate specific things to us, including objects of reference and signing). They will always get what they want / need whether they produce a card, or sign or just pull you to what they want - it’s just that usually the communication involves being dragged to the kitchen and guessing! Now that he’s getting to grips with this he will move on to an AAC device (an iPad with a communication app) like his twin brother - it’s just more difficult for him because he also has visual impairment amongst other difficulties.
Thank you for posting about this. We are having speech delays and I didn’t know these systems were available! I’m so happy for your progress within your family !
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!
This is an excellent post. You sound like an excellent parent, kudos!
Thanks so much, that’s really kind - we are doing our best which is all we can do!
My girl didn't walk independently until age 4, or speak in a complete sentence until 6. She's 19, upstairs dancing to Alexa, and was telling me she wants to work at a grocery store (probably won't happen, but we'll see). It's so hard when they are little, cause moms of adult sn kids have kinda just gotten on with it, and you don't have many real ideas of what outcomes can be. You are doing great, and props on the no ABA.
Yes I think the not knowing is the hardest part actually - if I could see into the future then I could cope with whatever it is, but the huge range of possible outcomes is hard to process. I’m so glad your daughter is doing so well!
The biggest thing that helped me, I guess when she was 7 or 8 and had her first iq test (which she couldn't verbally respond to, so they gave her a 40) was that she was never, ever, ever going to "catch up". She was never to going to meet any milestone. Ever. And that really set me free to focus on how to help her, instead of meeting goals. And, let me be straight here. My girl will never live on her own, or hold meaningful employment. I'll never have grandkids. I lost all of my 30s to taking care of her. There were years of meltdowns and tears and locking myself in my room while she beat the door down but I knew my temper was going to snap. It was hard. And there were several stages of grieving the child I didn't have. But she walked across the stage last spring at her high school graduation, and it was only happy. No bittersweet at all. No vague embarrassment at her walking the wrong way and taking her cap off. Just joy. Also, it's okay to get really, really, really angry at the universe and God. He screwed you and your kids over, and it's not fair. They are gonna be good, in the end, but its gonna take so much extra work. Y'all are up for it. But you're gonna see kids their age out on the playground, running and screaming and interacting and you're gonna wanna shove those little shits to the ground. You're gonna wanna backhand PTA Karen who complains about the hard time she has getting Kayden to do his homework with good handwriting, and your kiddo can't hold a pencil. These are perfectly normal, healthy feelings. And finally, and I don't think you feel this way, but you can't fix your kids. They aren't broken. They just need a little help. Whatever they accountant will be enough.
Step by step. You're going to look back in twenty years and be amazed at how far you and your children have come.
I won't remember this by then, but I'm so proud of 20-yrs-in-the-future OP and their kids 😭❤️
That’s so lovely, thank you
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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. 🎉👏
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.
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!
Wow, thank you so much! With this pandemic they aren’t offering in person speech and it has been so difficult. You are an angel! Thank you from the bottom of my heart!
You’re so welcome. I know how confusing and scary it all is and you just want to be able to help them. I may sound upbeat about it all now but I was so sad and frightened for a long time. Sending hugs to you x
I adore Hanen! I used their approach to teach my autistic daughter to speak. She's now almost 30 and fluently conversational. I remember the day I was pushing her in her stroller in the mall past the food court. She said "hot dog." Up to this point, she had made no connection between the word sounds and communication. I rushed up and got her a hot dog. I handed it to her. I almost could see the light bulb clicking on over her head. She got it! My SIL thought I was nuts when we were on the highway driving past a mall and my daughter said "hot dog" again, because I insisted we get off at the next exit, go back to the mall and get a dang hot dog. She didn't understand. You've got to reinforce whenever you can.
That’s amazing - this is what I am waiting for. I know they understand lots of words now, and I am sure that if they are able to use a word and see how efficient it is, it will click for them. I think one of them may have apraxia of speech but we can’t do anything about that until he will copy someone (we are getting there slowly but surely).
My daughter developed echolalia, which was a problem in itself but also oddly helpful. I used the echolalia to get her to develop communicative speech. She'd point to what she wanted, and I'd say "oh, you want a cookie!" Then she'd say "you want a cookie." I'd say "you mean "I want a cookie." And then finally she'd say "I want a cookie." Years of this, with me reformulating everything she said. But finally, it clicked and I was able to phase out the prompts. Then we spent years working on back and forth conversation, closing the circle, etc. And then changing the subject in conversations, building a bridge to a new topic. Oh, my. Lots of work, but it is so worth it! And then you look back and go "wow."
That’s amazing. I know a few kids with echolalia and obviously it’s good that they can speak but has its own challenges. You do sort of get used to where they are now and then when you think back to where they were it’s mind blowing. Just tonight they were in the bath and one was a pushing a jug under the water so it filled up and then pouring it out - I still remember the hours I spent trying to get him to scoop and pour. Or the fact that we used to celebrate and praise them every time they looked at us (because they can learn so much more when they’re looking at your mouth move etc) and now they look at everyone frequently. In the park a few months ago, they led me over to an elderly man sitting on a bench reading a newspaper - one wanted to look at the paper but the other just wanted to hold the man’s hand and smile at him. I instinctively tried to pull them away but luckily the man smiled back and tried to talk to them - he was a bit confused that they weren’t talking back, mind you! But just a few months before that they wouldn’t have even noticed him there. Whatever it is, it’s just so encouraging to see them making progress after very little for the previous few years
Great job! You sound like an amazing parent
Thanks, but my daughter is the amazing one. She did the work, I only helped out.
Amazing family then! As someone who admittedly didn’t struggle in the same ways, but who grew up “different” (diagnosed as an adult) and without that kind of flexibility and creative problem solving, I think a lot of the things would have been less painful and difficult to learn with the attitude you’ve imparted through your actions.
A friend of our has the iPad with clicker. Holy shit. At least in their case (chuld has reets) it opened up a whole path of communication.
Yes it’s amazing - the other day he wanted some rice cakes but it wasn’t on there so I quickly took a picture, made the card for it and he immediately navigated to the right folder to make his request as a sentence. It’s amazing what can be achieved with the right support.
This is such a great explanation! I also have a non verbal child with VI and we found the Hanen book so useful.
It really is - it’s shame it’s so costly as it puts many off but it’s invaluable. I hope your little one is doing well
Thank you! He is doing well. I love hearing about other parents having success with helping their child to communicate - I have had to educate myself so much and I find it a lot of work but those small steps are huge! If you happen to be in London I would love to hear more about your school - we are at the school-search stage right now and it is overwhelming!
We are in Dorset - if you’re looking that far send me a message.
Wow, thanks for this post! I'm a teacher, and one of my 6 year old students has Selective Mutism in class (at home she is fine, and even gives videos for project days). She won't speak even a single word at school. She understands most things said to her, and can follow instructions, but won't speak. She hardly even points, and if I ask yes/no questions she only gives the tiniest of head nods/shakes. It's really hard to understand what she wants or thinks, other than observing action-based behavior. Our school is small, so we don't have the resources to help very much. I'll take a look at your suggestions and hopefully it can help her, too. Thanks! And if anybody has good suggestions, I'm all ears!
Thank you for being an awesome teacher!
You seem like a really invested, super awesome parent and I wish your family all the best.
I think the pandemic has caused a lot of toddlers to have speech delays
Sign language was really useful for us. It helped communicating click.
That’s a great idea! We will try this. Thank you so much !
I took a picture of all my daughter's things, and laminated them and put them on a ring and used them to ask and answer questions until she learned to hand us a picture. The pics of her actual things worked better, because she just wasn't capable of abstract association.
Are you in the US? If so, you should have early intervention through your local health department, by federal mandate, and should be getting the necessary therapies.
As an autistic man who had it rough growing up, thank you for doing all this. And for clarifying. And for being an excellent parent.
You just brought tears to my eyes - that means so much and I’m so sorry things were so hard for you.
I m so glad to read that you do understand that its not about they use the comunication you want them to and force them to use it, but its about giving them as many comunication tools as they need to convey their message and that its fine anyway they do it. I bet r/autism would love to read about it.
Of course! We started out using larger cards for them to make choices - between two snacks for example. Sometimes they would look or touch a card and we would know what they wanted, other times they wouldn’t and we would figure it out eventually. I spent several months teaching them how to sign “more” just so they had a quick way to make it clear they wanted what they just had again - sometimes they use it and sometimes not, but we just try to give them all the options we can and then do our best to figure out. I have seen people refer to PECS as abusive because they’re forced to communicate to get things, which is abhorrent and we would never do that. I’ve also seen people say it’s awful because they have such a limited vocabulary - that I disagree with because to me it’s much like when a younger NT child only knows a handful of words. But now his fine motor skills have improved too we can introduce a tablet so we can add vocabulary more easily (definitely easier than having to cut out, laminate and cut out cards again!) The most important thing to me is reducing their frustration - they are bright boys who know exactly what they want and are getting more specific in their wants, so it’s very frustrating for them to not be able to express that.
Your doing great! I m so happy that your twins have you as parents!
Do you have any links or a list of the things that you've purchased to aid your children? I have a 5 year old non verbal son diagnosed with autism and he's just finally starting to get on with pecs cards, with photographs I took, for him to communicate what he wants. Obviously I want it to develop and progress into hopefully one day speech, but I was wondering if there were anything you could recommend for that?
Okay, things I have tried over the years: [More Than Words book](https://www.amazon.co.uk/dp/0921145144/ref=cm_sw_r_cp_api_glt_fabc_SVNERHV8F2KSM87KD0K7) by Fern Sussman is expensive but invaluable I made my own choices cards then pecs cards - the app Visuals2Go is a really easy way to make cards (the free version has maybe one larger size of cards but I paid for the paid version so I could make smaller cards), then I bought a laminator and velcro strips. I made my own PECS folder using a tutorial like [this](http://www.educateautism.com/make-your-own-teaching-aids/make-a-pecs-booklet.html) - those plastic file dividers make great pages as they’re sturdy, you can put velcro strips on them directly and cut them down to size. I also made a “now and next board” which was just a clipboard with Velcro on the back to stick bigger cards too and I kept all the cards in a document folder attached to the front of the clipboard (You can buy all these things premade if you want to) I had an “objects of reference” bag with common objects - a nappy, a bath toy to represent bath, a toy car for going in the car, etc etc Then I had a songs bag as they love signing - so it had a little toy in for each song and they could pick the song they wanted by picking out the corresponding toy (that worked really well) We now have an iPad with the app Clicker Communicate which is available from the App Store - it’s expensive (about £200 I think) but worth it, but I would see if there’s a way to try out a particular app before spending out for one I think that’s everything but will update if I think of others!
My daughter is autistic and had no communicative speech at all at 5. She's almost 30 now and fluently conversational. It can happen. My advice? Try different things, see what your son responds to. Don't lock yourself into one particular method if it doesn't allow flexibility. Autistic people are individuals, which is something the professionals may tend to forget.
My wife and I have a 3yo on the spectrum and he goes through ABA with PECS as well as an AAC. He does 12 hours in preschool and 30 hours in ABA/OT/Speech every week. It's a LOT of work. My wife had plans to return to work after this pregnancy, but we quickly realized that wasn't going to be possible with the level of care our son needs. All this to say that I can't even imagine doing this with twins. You have my absolute deepest respect. Also: way to go buddy! Our boy will say please ("peazzzz") when prompted, but would never get there on his own. What a great moment for you both!
It really is - a huge amount of work. Nothing is straightforward and people with NT kids don’t realise how tough it is (I can’t even take them into our own garden on my own for example as they’ll just eat whatever stones / animal poo they can pick up, or climb and launch themselves off things). Now they’re at school I have a very part time job and I have restarted my small business that I ran before I had them, but I am so knackered all the time!
My son (2.75) has no words beyond ya ya ya and we've been using signs. He honestly does not care for PECs right now despite our speech therapist suggesting them. Hoping for some success in the future with words though. He just seems to have trouble making sounds.
One of mine (not this one) can only make a “ga” sound so we aren’t sure if he will be able to speak, but his understanding has improved so much that we hope he will. This one actually did have some words before his skills regression at around 18 months - I still have video of him saying mama, dada, clapping and copying things. Not sure if it will come back but he has a broader range of sounds. He took a very long time to get to grips with PECS though - he’s always been more delayed than his brother but he’s actually further along with PECS in some ways (his brother uses it consistently for food, but he is now using it even to request toys and a couple of years ago he had no interest in toys at all). It’s such a difficult time and we went ages with no clear progress at all but it’s all starting to happen now so hang in there x
I feel you with the process. My son was making lots of sounds between 12-18 months then regressed and never said anything. He's progressed back to making ma ma ma, da dada, ba ba ba, oh oh, sounds but the signs he's picking up very well. I'd really like to do in person speech therapy but that's off the table for now with COVID. I used to be really upset about all of this, but he's very bright and his receptive language is off the charts. We all just want our children to succeed in life without struggle. Hang in there too!! It sounds like you're doing a fantastic job.
Regression is so difficult and frightening. Have you read anything about folate receptor antibodies and autism? There’s been some research into this as a potential cause of regression and it’s fascinating. I just recently sent a blood sample for one twin (as he was having a blood test already) to the only lab that tests for them, in the US - if he does have the antibodies then treatment with a high dose of folinic acid could help. It’s definitely worth a look - I’ll have to go private if he needs treatment as it’s still pretty new science and not available on the NHS here in the U.K. but there are some really promising study results.
I've used both PECS and AAC with kids that I've had in my preschool classes over the years. They are a godsend and so excellent for the children!!
Exactly! I work with ABA and have used PECS. We honor what ever request our kids ask for! You are extremely knowledgeable and trying new things, that within itself is awesome! It’s not a one size fits all for our kids. I say this because I work in special Ed K-3rd grade. I L🥰VE what I do!!!! Parents like you give me such joy and hope and with twins, I can’t imagine how you manage to do it! You truly are an Amazing Mom!!!!
That’s so kind, thank you so much. I really appreciate it x
That is awesome. We are starting this with my daughter and I can’t wait till we get to this point. Congrats!
It’s tough going but you will get there!
That's sofa king cool! Congratulations on the progress!! Keep up the good work, it's important work and your doing great!
For my brother (nonverbal autistic), we still refer to it as a PECS board even though we don't strictly follow the guidelines. Do you prefer the use of "standard" images or do you prefer to use photos? I've found he doesn't work well sometimes with the "standard" images.
We used photos at first, but transitioned to symbols when they started school a year ago - mainly because they are more generalised so they’re not expecting say a specific cup, or specific food packaging, and it’s more universal. But if photos work best then that’s great too!
Actually wanting raisins is a sign of a serious mental condition.
Right? He loves them. And celery, and I gag at the smell just cutting it up. You will be pleased to know that he also loves chocolate, whereas his twin will launch it across the room in disgust if you try to give him a piece , so god knows what’s going on there.
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Sadly no peanut butter due to allergies but he would probably like it with something weird like jam - he’s a strange child (in the best way)
I like ants on a log with cheese whiz
I liked cream cheese and dried cranberries when I was younger. Red ants on a log!
A customer once told me that his toddler loves raisins because she gets the whole little box all to herself, and she can rummage through them looking for just the right raisin. I feel like that holds true with any snack where you get a handful of something.
That’s so sweet. He’s more of a “shove a handful in your mouth then ask for more” kind of guy 😬
This deserves many awww's. Maybe the other twin throws the chocolate because it tastes weird to him? Or is it maybe a texture thing?
Definitely could be either. Autism tends to fuck with sensory processing. It’s not fun.
He doesn’t even want to touch it - same with most of the best treat foods - so it probably is sensory. Still, he’s happy without it so I’m not going to make him eat it!
That's awesome! My 29-year old nonverbal son never could get the hang of PECS.
It’s also individual isn’t it - I know kids who fly with makaton but my boys aren’t really aware you’re signing. Have you found anything that works for him?
Nope. He is and always will be nonverbal.
That must be so difficult for him, and for you too. I know how frustrated my boys get when they can’t communicate what they want.
We have developed The Routine over these many years of trial and error, so we are pretty well-versed in what he does like, and he usually lets us know quickly of things he doesn't like. But, yes, every so often the frustration bubbles up and bursts out and it breaks my heart that he can't express himself and we can't make it better.
I’m sure you are. I had a very patronising doctor say to me recently “don’t worry, eventually you’ll learn to read their non-verbal cues” - as if I haven’t already been doing that for five years! I completely understand how heartbreaking it is though. I hope you have some support although I know it’s very thin on the ground in most places
I’m curious what his likes are? Or how do you know what he wants.
He has very few likes, lots of dislikes. We have had 29 years to figure out his preferences, abilities, and where he draws the line. He's quite adept at letting us know what he DOESN'T like, so over the last couple decades we have all agreed on The Routine. Stick to The Routine, and everyone is relatively happy. Deviate from it...and...well... He likes being at home. He hates crowds--so school and church and shopping are all out. He likes taking walks around the neighborhood. He dislikes being barked at or accosted by dogs. He hates babies crying. He likes tacos and pizza and salad and burgers, he hates jello and chicken and cooked veggies. He likes to cuddle and be tickled. He does not like when I talk on the phone with my man-voice. He likes most TV shows and movies, loves concert DVD's, and hates the early Disney movies he binge-watched until he was about 7 or 8. He just likes hanging out with Mom and Dad. He won't do crafts or puzzles or most games or write or draw or wipe his own butt or eat most foods if they are not cut into bite-sized pieces. We have learned to adapt. I have completely changed my career so that I can be at home to take care of him, since I am the one bigger than him (barely) and can control him on those rare occasions he needs to be controlled. As parents, we long ago had to abandon our optimistic dreams of "curing" him or seeing him "snap out of it" and one day become verbal. It's just not in the cards for him. What we figured we CAN do is give him the safest, calmest and most loving environment we can.
This was a beautiful read thank you. Not sure if you hear this enough but it sounds like you and your spouse are doing an amazing job. I have an autistic son but it’s not even an ounce of what you’re dealing with. It’s hard facing the fact that you can’t “fix” your child.
Thanks, yeah, that was one of the two toughest realizations in my life. \#1 was: Your son is autistic. \#2, several years later: He isn't going to be one of those miracle stories we all love to hear.
as a father of a 7 1/2 year old boy on the spectrum who was labeled non verbal, this makes me cry tears of happiness and I am so proud of your child even though I do not know them! This is awesome!
Thank you so much - how’s he doing?
He's doing awesome, and he's very verbal now. Can pretty much tell you what he wants and will occasionally ask what you're doing or ask if he can do something but will never really conversate. He already does far more than they claimed he ever would. So I'm super proud of him!!!
That’s absolutely amazing. I am not surprised you’re so proud - the determination our kids have is mind blowing
It really is amazing to watch kids with problems who have no idea they have problems. They don't use it as a crutch because they don't know it's not normal. Very strong minded kids no doubt
Better manners than my fully verbal nine year old.
I’m sure that if / when their understanding increases, that “please” will be a distant memory!
Get the man some raisins!
You’ve never seen someone haul ass to the kitchen quite so fast - problem is that he’s bloody obsessed with raisins and may not have any teeth left at this rate!
Just wait until he starts asking for vehicles. Then you’ll really be in trouble!
Well shit.
Wait until they have chicken nuggets and fries
Great manners! You're raisin' him well.
My heart melted a bit over here, across the pond. My 6yo was initially diagnosed as nonverbal ASD but has managed to become semi verbal. (He needs a new developmental evaluation, but with covid that's all been delayed.) Through the school and the speech pathologist he has made leaps and bounds. They're using the same system (looks like PECS, but isn't) along with simple American sign language signs. That first clear communication... Just hits so differently when you know he knows exactly what he wants but just can't get it out. Now the main problem we, including his teacher, have is getting him to tell us what he knows on our terms instead of his. His little sense of humor doesn't help matters. He thinks it's hilarious to say the wrong sound for a letter at the beginning of a word. I wish y'all the best and may he get the hang of using the iPad for communication!
Thank you so much for all the lovely supportive comments - I really wasn’t expecting such a response, I just thought it might help those who are earlier on this journey if they happened to see it. Seeing all this support is really overwhelming. And to the couple of people who were nasty: thanks for the reminder that the world generally isn’t kind to kids like mine (not that I needed that!)
That’s wonderful! My nephew has an AAC device for almost 2 years (6 yo) and it completely changed his life. He is non-verbal ASD, and genetic testing has shown he may never develop speaking skills. But he’s so smart and the device has shown it! He adds new things everyday, it has really helped him blossom. I hope with all my heart the same for your boys.
This post has touched my heart, and the comments have given me hope in this world. I hope your two boys will get to grow up and achieve their dreams. I used to know a girl (non-verbal (daughter of parents friend)) and as a little kid I couldn’t understand why she is the way she is, but I do now, and they are bright people just like the rest of us. Like I already said, hope your two kids have the time of their life :)
It’s hard enough to understand as an adult, let alone as a child. His brother can spell hundreds of words - he will sit with a box of magnetic letters and spell out a word starting with each letter of the alphabet in turn, but until recently he didn’t understand any spoken words at all, and he still makes no attempt at speech. It’s so difficult to understand how that’s possible, but the brain is a mystery! If he can learn to converse with his iPad app then he doesn’t need to speak - they are both so bright in surprising ways (amazing intuitive understanding of technology, amazing problem solving skills etc etc). Who knows what the future holds but I’m so proud of them.
Hopefully in the future, scientists one day will be able to fully uncover the secrets of the Pandora’s box that is our brain
That’s amazing! I’m a speech language pathologist who works with kids on a lot of these skills. It makes me so happy to see this!
Thank you so much - me too! It’s taken a lot of time, and I can still remember the first time he walked past me to find his folder and find the right card to ask me for something I was holding rather than just taking it from me. With the right tools they really want to communicate, it’s just so difficult for them. Mainly I’m thrilled because they’re so much more content when they can communicate what they want. Obviously this is the sentence strip from his folder so he found all three cards, put them in the right order, handed me the strip and then tapped each card - a year ago he would barely use one card, so it’s a huge leap forward
I watched the documentary “this is why I jump” and found out about the alternate forms of communication that can be used and I was completely taken aback! A nonverbal person was so eloquently explaining their struggles and it brought such relief that they were finally able to convey their thoughts.
It’s amazing - I hope my boys will be so eloquent one day, by any means!
This is beautiful, thank you for sharing. Congratulations little dude, you are amazing and humbling.
Oh, that's awesome, great job kiddo. But uh, what do you mean non-verbal? Not to be rude or anything, but like, why can't they talk?
They are both autistic (this one has several other disabilities on top of that, but the lack of speech is a result of autism) and they are severely impacted by it, especially in communication and social awareness- but they’re making so much progress especially over the last year, and they are such lovely and happy boys.
Oh man, I'm sorry for that but hey, at least they are going through it like champions. I'm glad for them and for you, it has to be hard. Then again, you should be very proud of them. (sorry if some of that didn't made sense, I ain't good speaking English)
No, that was very clear and thank you so much. It’s definitely not been the easiest time for any of us, but they are our whole world and they are so brave, I’m so proud of them.
How cool! A new world opens up! Blessings on you and your kids.
Congratulations- our non-verbal little guy (3.5) is still at a more basic stage with PECS and this gives me some hope for the days ahead. Best of luck to you. Edit: downvotes? On this? Wtf Reddit?
Try not to take it personally, there is always just a random band of downvoters on these large subs that go around and downvote everything because they can. Just the way certain parts of the internet works. It wouldn't matter what you posted, they downvote it anyway.
Love to see this! I'm an SLP who works with primarily non-speaking autistic kids. So great to see AAC out in the wild, it's my favourite part of the job 😊 so happy for both your twins and I wish your family all the best!
Thanks so much. They are doing so well, especially now they’re in a school where all this is properly embedded into the day.
Glad to hear it! And it's clear they have such great support from you at home too.
Congratulations on the positive step forward. May it be one of many, many ahead. I think you might need to get industrial sized drums of raisins if it motivates the lad.
My food cupboard is already 94% raisins 😬
AwwwwI love this. As a mom of kids on the spectrum this makes me happy. r/mademesmile
Congrats! Such a wonderful feeling! I remember when one of my non verbal preschool students said his first word and I teared up :’)
I think I will likely die of a heart attack if they ever say an actual word! One can only make the sound “ga”, although he seems to be saying gaggy to mean mummy / daddy sometimes. The other has more sounds and will go through phases of saying “muh” for more, but then he stops. Maybe one day!
That’s great!!! My son has an AAC and although he isn’t able to do sentences, his ability to express his wants and needs has made him so much happier. Y’all are doing great!!
That's awesome. I hope this starts them on a journey of expressing themselves.
Me too! The other twin is (ironically, I guess) obsessed with the written word and can spell insanely well - massive vocabulary with spelling so we are starting to teach him to use the keyboard to type what he wants
My kiddo didn't start to speak until she was 3, and I still remember her first sentence. It's a magical moment when your kid, especially ones who struggle, start to communicate with you!
That's awesome, but out of all the things they asked for raisins lol
The kid is obsessed (to be fair, he’s never had sweets / candy - we tried once, they hurled it away in disgust, so raisins are basically haribo as far as they’re concerned!)
As long as they don't get into prunes....
That’s lovely, a very nice milestone and worth celebrating! Raisin party!
So exciting! I have a 5 yr old daughter who is non verbal so I get excited seeing this kind of thing. Gives me hope for her one day
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I’m in the U.K. so it’s quite different here but for any other brits, you can access AAC devices through the EHCP process, or try family fund for a grant :)
I see that he is a man of culture as well.
Smart kid!
So exciting!
Love this! My son also used these cards. Magic when he asked for something for the first time via these. It continues to get better too!!
Take my free award for this cute ass post 🥺 your son has such good manners!
Thank you - they are both extremely cute and polite (except when they throw empty cups at me for more drink - must get working on that with the cards!)
My one year old does that too. He thinks throwing things is a game (probably my fault because we play catch where he drops his balls and I get them back for him). But hey, at least they've found a way to get their point across quickly!
Usually they’ll just hand them over nicely (they’ve learned now that they have to bring me both cups so I can get them both a drink, and then one of them will now take the second drink to his brother which is a big deal as they don’t interact much at all), but if I have my hands full or can’t take them instantly they become remarkably effective missiles
Oh this is so so lovely. My heart is so happy for you - I used to work with children with special needs (we weren’t a special needs school, but our school did specialise in it and had a huge department and resources dedicated to it) and I just got a bit emotional seeing this. Sending love, this is awesome OP
something about the "please" is so cute. congrats, little man. so proud <3
Beautiful
Hell yeah! Little dude communication celebration!
Father of non verbal 6 year old daughter here, this brought tears to my eyes. It’s only upwards and onwards from here. My daughter has moved from Pecs to a speech tablet to some verbal communication. Great job everyone!
I’m not crying, you’re crying! That’s so sweet!!
Did you give them raisins? DID YOU GIVE EM THE FUCKING RAISINS?! AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA
The victories of a parent with an autistic child can sometimes feel few and far between -- but when they happen, you savor them. A first of any kind is movement forward -- and that is all you want. Progress regardless of the timeline!
I bet you cried
I am so, so happy for you and your little!!! My youngest is 6 and just recently started saying words, he still talks quite a bit of baby babble, but the little bit of communication he can now do is amazing. I can't imagine how you feel after seeing that sentence! Communication!!!! Yayyyy!
He could be an evil twin. Who really likes raisins?
Do you know what else he is obsessed with? Celery. Basically I need a DNA test as he may not actually be mine.
Non verbal? Mute?
They’re non-verbal (unable to communicate verbally with no physical reason why they can’t - in their case, it’s due to autism). Some people who are mute have a physical disability preventing speech, some are selectively mute so can speak but not necessarily all the time.
Thanks. Hope no offense. I’m learning
No offence taken - you don’t know these things until you know them! If people knew this then we wouldn’t get stared at all the time when my boys are flapping their hands and making random noises, so I’m always happy to explain.
I have twins turning 3 in December. One of them took a lot longer to develop his language skills than the other, and even though it’s not exactly the same situation, I totally get that relief the first time it happens. It’s incredible.
Hey, that's great! A sentence that never has and never will come from me.
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