Speech/Communication Delays - Support Thread

[RiverRock22]

I have noticed a lot of speech and language/communication threads on these boards lately. Any parent who has gone through this will know it is a lonely place and like me I assume many of you have been up to all hours trawling these boards looking for answers.

I thought a thread where those of us in the same boat could take refuge in would be a good idea. To share tips or just chat about our experiences.

My daughter is 2.8 and is experiencing what I initially thought was a speech delay, however, I feel now is more of a communication delay as her receptive language understanding is poor as well as limited use of gestures etc.

I feel she hits a lot of autistic red flags but only on the communication (and by default the social) front, although this isn't being marked as a clear cut case of autism just yet. I have sought SALT assistance and we are working through the communication areas, starting with attention and listening activities. My main concern at the minute is communication, she is so passive to the point she barely interacts with us and doesn't want too much input from us and this makes me so sad. I long to have a toddler that doesn't give me a minutes peace wanting to play games.

I know there have been many fantastic ladies such as @lingle who have been through this and came out the other side. So anyone who has been through it and wants to give advice you are more than welcome.

So welcome to this safe space to moan, worry, chat and get advice.

This thread has made me read back through some of @lingle 's old posts as well - I'd recognised the name but going back, it sure feels like there are times when you're describing my DS around age 4!

I hope this does give you some feeling of satisfaction @lingle that you ended up helping create a resource that has helped so many parents over the years. I've used your experiences and many others from those days and plucked out the best bits of advice and the lessons learned to inform what I do to help my DS as best as I can. When there's so little support available from official sources, these boards have been a real lifeline for practical information.

Our recent EHCNA application was rejected by the LA (surprise surprise, that's the next issue to untangle), but with the mountain of evidence and private support and resources already gathered (without any help from DS's nursery, area SENCO, NHS or other LA resources I might add) the Council representative at the mediation did close the call asking me if I wanted a job in her team. I know this was just a bit of flattery, but it's due in no small part to what I've learned over the months and years on these boards. More importantly DS is progressing, and is happy as he is progressing. At 4yo his language skills are slowly improving, he's learning new skills, he's taking an interest in his peers for the first time... I know it's going to be a long road but I can at least feel happy that I'm doing the best I can manage in the given circumstances to support him during the crucial early years and that means a lot.

Hiya how's everyone doing? Anyone working on anything in particular this week? Any successes? Set backs? We've had some joy with a matching game (one of those orchard 'educational' games, I think I'll buy some more) but I don't know, I'm just feeling really low today. We are making progress (slowly slowly slowly) it's just other stuff around it that feels like hard work and like an obstacle to 'learning'! Just can't seem to gain their interest and feel exhausted by the whole performance of it all. Tell me I'm not alone! x

We've had him randomly saying the number two with a counting song, no other numbers just that one, but he doesn't have the understanding to know what it means that I can tell. Any step forwards are incredibly slow so you aren't alone.

We had a call on Monday to say he's at the top of the portage list so they can come and do the paperwork with us tomorrow so fingers crossed they ll get started next month with him to give us more structured things to work on.

Oh the days are long and the progress is slow. I made my daughter a postbox and took 60 pictures of all the things and people she either can say the name of or uses it everyday.

I give her a flashcard and she posts it after saying or trying to say the word. We had 'bear' for teddy and 'appy' for nappy. I'm happy with so far. Every win is so small though, we just have to keep plugging away.

My most difficult thing (apart from language) is engaging her. Oh how I long to be one of those mothers whose child tires her out wanting to play. I have a little explore content to potter about on her own.

The mental exhaustion is worst. I don't know about anyone else but I do feel it affecting my mental health. You give so much and get so little back but you just have to keep going.

@1990shopefulftm glad to hear am not alone. You must be pleased accessing a portage service, I hear its great. What sort of provision are they offering/are you hoping for? Hope the paperwork isn't too heavy going, that part doesn't sound fun...
@RiverRock22 bear and nappy! Way to go, little river rock, that's great. I am the same it's hard to celebrate the wins when the task at hand feels so enormous. I feel like I'm living a bit of a double life where I go to work all chirpy (haven't shared my concerns with people in real life) but then have a really hard time at home dealing with the reality of things and just generally trying to remain sunny and unfazed. I'm with you on the engaging thing - our issue is we have such a short attention span it's just flitting around the room at high speed. I try to follow the advice to let them lead the play and narrate it etc but it's almost like I'm a horse race commentator, I must sound insane!

Honestly I m just appreciating someone else to suggest what we can try with him, supposedly portage workers can help figure out and liaise with childcare options which I feel like I need some direction with too.

@RiverRock22 We gave up on the postbox/shoebox exercise early, even though we did ABA (a lot of programmes include that activity I think). With the massive qualifier that my DS is only 4yo, he's still catching up and not "there" with his speech yet either, and I'm still learning as I go so definitely don't want to put myself forward as an expert, I'd suggest ditching the activity if it's not fun for the two of you. Fun is the name of the game if you want to get your DD excited to talk. I totally get the exhaustion of trying to do these activities and getting so little back.

So much of all this is guesswork when they're so little, but I'd focus on activities your DD does get engaged in and use those as the opportunity to encourage communication. In the early days, for us, this was things like:

• filling in words in his favourite books and songs, or in processes he enjoys because of the reward at the end (e.g getting all the individual items for a bowl of Rice Krispies and giving him the chance to name all the items as part of the ritual)
• developing a library of "phrases" that you use all the time in exciting or enjoyable activities (for us this was things like "Wowie DS, I like that!" when he built a tower or finished a puzzle, or "hip hip hooray!" and make a big song and dance about it)

If you suspect your DD is ASD (I definitely don't want to suggest either way as obviously I can't know that!), but if you do then there's a good chance she may be learning language differently, and the approach of learning single words, to then use as building blocks for sentences, might not work as well with her. Similarly, no matter how amazing a teacher you are, it's really hard for anyone to make the postbox activity overly filled with emotion or enthusiasm which, again, if your DD is learning language differently, will be key to getting her interested in verbal communication.

If that's the case I would definitely look at the Meaningful Speech resources I mentioned up thread on instagram - https://www.instagram.com/meaningfulspeech/ - they've got tons of free resources and videos so you don't have to fork out lots of money for their training course if you don't want to. The approaches they recommend are evidence-based but also more intuitive and child-led, less about table activities that are probably draining and boring for both you and your DD. I feel like since we've started focusing on phrases (i.e. scripts) that have meaning for DS, his language development - hell, just the AMOUNT of language constantly coming out of him - has really picked up.

@Scratchybaby I found that really helpful thank you for that. I'm going to check out the Instagram page. My interest was piqued by the mention of ABA...like a lot of parents with ASD concerns I've often seen it mentioned. Can I ask a bit about it? Did you access a programme with a practitioner or did you go down the training route and try to deliver it yourself? Really interested to hear more of your personal experience with it if you'd care to share (obviously don't if you don't want to!)
@1990shopefulftm hope your meeting goes well today!

@Miserabletoddlermum I'm not even sure where to start! You can read through the controversies and differing opinions if you search the subject on these forums, but I will just say that if you boil it down to the teaching approach that it is, it's about how to encourage or change behaviours through reinforcement. The controversy is around what behaviours you focus on, and what you use as reinforcement (you can see the danger when working with young children with ASD).

I went with a private consultant after many phone calls and interviews with various providers, based on a gut instinct that she would like my DS and DS would like her (they do). She set up a learning programme and trained me in approaches to follow the Early Start Denver Model (which isn't strictly a traditional ABA programme, so we'd already diverged a bit from the start). The ESDM is an approach to supporting very young children to develop their joint attention, expand their play and communication skills through play (similar to a lot of stuff @RiverRock22 is describing - you can read An Early Start for your Child With Autism to learn about it).

It was really useful in the beginning and having a programme of "learning targets" helped me a lot. I'm not an early years expert, so picking up on things like how to help his fine motor skills didn't come naturally to me, despite their importance.

Fast forward nearly two years (DS is now 4) and I'm glad I did it because it gave us a launchpad, I found an amazing tutor who uses the best bits of the ABA programme combined with a number of other great approaches, and I learned so much about the broader range of support out their through our consultant. We are now, however, branching out a bit and ABA has become less central to the support DS is getting as he grows and develops his own personality and interests. We never did ABA to achieve compliance (as some detractors have you believe), and DS is DEFINITELY not a compliant little boy! He is super spirited and self-directed - meaning the ABA-recommended learning targets are becoming harder to shoehorn in the day and have become less fun than the learning opportunities he's now creating for himself anyway. But as I say, the programme was a great launchpad.

My personal opinion is it's worth looking into, but stay really involved. Don't cart your DC off somewhere to have anything done "to them" - learn it yourself so you can take the best bits of the useful strategies and leave the rest that is less useful or that you actually disagree with. I'm finding that, to help DS learn in a way that's fun and enjoyable for him, it's all about putting together the right patchwork of approaches that fit him as an individual and ABA has only been one part of a bigger picture.

On the other side of the coin we tried ABA for years and spent thousands (changed tutors and supervisors several times, used v experienced ones) and got nothing from it. I think it very much depends on the child, DS was very different in the following ways from children who seem to benefit.

First, he was/ is massively laid back and happy to go with the flow. He is not really motivated by anything. Certainly not toys, not sensory things, not the iPad. The tutor used to say aba would work if I could give her the equivalent of a £1000 note as a reinforcer for DS, so he would do anything for that, essentially. She said all I was giving her and all she found after doing lots of assessments with DS were 2p coins. He would not bust a gut for a 2p coin. He would do stuff, maybe, for that but it was more because he felt like it on the day. The only £1000 note I could think of truly was sweets. Even then there were only so many smarties the poor kid would eat. I’d watch her and it would be like hi DS! (He would smile, get a smartie). Sit down DS! Another smartie for nice sitting. Let’s do x (a smartie did not getting up)… after literally 5 mins he had had enough of smarties and even if she gave him the tube ‘for free’ as she used to say (ie expecting nothing back) he didn’t want them. He would just get up and walk off or sit smiling at her and no £1000 note was present to make him behave otherwise.

The other thing (in the context of speech) was unlike some of the DC being discussed DS could not physically say the word. So she would be holding out for even the first letter of something and he couldn’t say it, let alone the word. He would just get frustrated and cry or blank her. Sometimes he would just shut her out by closing his eyes 🙄🙄. She used to say he’s got to have the ability to do the thing, and he didn’t. She also used to say she couldn’t get inside his mouth and manipulate it so that the right word or sound came out which was very true.

I have nothing at all against ABA in principle if used correctly but for DS it got him nowhere. In fact often the tutor would leave after half an hour … once she said to me I’m just babysitting him not teaching him and I can’t charge you for that.

and yes, to the MH issues and yes to the split personality at work and at home, a million times over. Even now I don’t go into issues about Ds with work, it’s all glossed over. In the early days I used to take AD and ended up one day passing out in the middle of the office (very unlike me) due to a change in my meds. I just told them I was over tired. Having a child like DS especially when things go on so long (for me) absolutely fundamentally changes who you are.

sorry I didn’t answer the question about grommets. For DS I didn’t feel it made any difference. His ears used to literally pour with gunk and that resumed even after the grommets went in.

@Scratchybaby

Thanks for the suggestions. We don't seem to be at the filling in the words stage yet but she does look at me when it comes to the 'high' point in a rhyme so she definitely is tuned in more it's just the speaking part she isn't getting.

For the postbox game she seems to enjoy the posting part so for now while she enjoys it I'll do it but definitely you're right if anything gets a bit too prescriptive and for the sake of it it's pointless.

I do like some of the games you suggested, the one about getting the components for cereal was good.

@Scratchybaby

Is that ESDM similar to Laura Mize's 11 steps? I have been trying to work through them.

Which of those 11 pre linguistic skills have you all found the toughest to master?

@RiverRock22 I've just scanned the Laura Mize website (apologies, that's a new one on me!) and it does look quite similar to many of the ESDM-based activities we did within the ABA programme. All these approaches have so many common threads that I'm sure you're on the right track!

In terms of the 11 steps - I don't think I could say that we've actually "mastered" all of those, but I'm not sure what standard you have to reach to say they're mastered? Things like turn taking and responding to another person are still a work in progress.

As I type that, it occurs to me there might be something in differentiating the points that - at least for us and our DS as ONE example of a DC learning language - DS is indeed speaking a lot but still has a lot of communication skills, as well as language skills, to learn. DS uses some original speech (with bad grammar, but it's slowly getting better) mixed with some delayed echolalia (scripts with a unique meaning and communicative purpose for him that I need to decipher - think of it as simply using the "wrong" word to describe something, which can be corrected to the "right" word over time). So he's got speech, but he's still learning interpersonal communication skills (asking and answering questions for example) If your DD follows a similar path, I wonder if you'll also see that some of those 11 steps are longer term goals, but you start hearing some speech before they are all actually mastered? We certainly started working on the areas outlined in the 11 steps at around 2.6yo via the ABA programme, but with really mixed levels of success and not even on all 11 steps. Regardless, after about 6 months or so we started to see the floodgates finally open (almost entirely scripting from the Gruffalo at first though!) It may be his speech will become more flexible as he works his way through those core skills in the 11 steps over time, but he's certainly got more learning to do.

” I feel like I'm living a bit of a double life where I go to work all chirpy (haven't shared my concerns with people in real life) but then have a really hard time at home dealing with the reality of things and just generally trying to remain sunny and unfazed”

God I remember this. It hit me as I approached the emotional battleground of the school gates and donned my metaphorical armour that lingle felt more like me than real-name-me did.

“I hope this does give you some feeling of satisfaction”. Yes, Profoundly so. There is a lot of suffering and isolation connected with SN and feeling useful is very empowering. It also reconnects you to life outside your family.

I have rebuilt my career now though I continue to do music work at the primary school where my kids went including with children with SN. I love sitting in the staff room with the nursery teacher who came through for us. She knows she is my hero.

I wonder how many women in the analytical professions are dealing with this?

I'm seeing little bits of progress now and again. Some little words coming in context, some close to context e.g. calling a balloon a ball and some echolalia e.g saying apple when there's none about.

Echolalia is good though isn't it? ny experiences with it?

I have also noticed some words jumbled up (could be linked to previous hear problems/processing etc). She says hello like 'Lo-ah'.

@RiverRock22 In a nutshell, echolalia - including delayed echolalia - is indeed a very good thing, and from everything I've read it's the first steps towards language development. It usually happens when DCs are babies, and all we hear is babbling because they can't yet pronounce words clearly, so don't realise they're saying "apple" seemingly at random. When a DC has a speech delay, this stage sometimes comes out as more recognisable words, which sounds odd to us, but is just a sign they are indeed developing language. Just a bit later with what appears to us as a mismatch in their expected ability to pull words together against their more advanced ability to pronounce words clearly.

I know I'm a broken record here, but I'd honestly look at the Meaningful Speech resources, or find resources by Marge Blanc (they're all similar and interlinked. Blanc is the clinician who developed the approach over decades in her speech therapy clinic in the US). They focus specifically on supporting a child who uses delayed echolalia (a gestalt language processor), if that is indeed what you're seeing. It made me look at my own DS's language path totally differently, and I stopped wrestling with things that were possibly counterproductive like trying to teach him how to answer yes/no questions with a yes or no (he'd parrot the phrase but wasn't learning to use "yes" or "no" flexibly), or asking questions he didn't have the language skills to engage with at the time. I look back and think I was probably fighting against the grain, rather than working with it, and setting myself up for frustration.

It's an easier, more instinctive, approach for the parent/SLT, but still helps them along their path just as effectively or (they would argue) even more so because, again, you're working with the grain rather than against it. It also gives you a much clearer picture of the likely path ahead of you across the 5 or 6 stages to full flexible language, which for me was hugely reassuring.

Hey @Scratchybaby I actually found that 'Meaningful Speech' page on instagram and have read a few things from them - it looks good and it makes a lot of sense. I don't know if my DD quite fits the bill just yet as her speech is only emerging but it is definitely something that could apply to us. I need to keep an eye and see where she's at.

Yes, it might be too early for you to know for sure. For us, by about 3yo, we starting hearing whole passages from the Gruffalo coming from his bedroom from the second he woke up, and he'd start using phrases from Julia Donaldson books in predictable ways (he used to say "I am Stickman" when he was upset because he associated that line with a sad part in the book/movie, "Deep dark wood" when he was feeling cautious or pensive). If you start seeing stuff like that you'll be able to be a bit surer it's delayed echolalia, and therefore worth looking at that resource.

Hi all,

Ds is a fair bit older than some of your children but I thought I'd pop in. He's nearly 14 now. He was non verbal till 9, limited receptive language till 8. He now uses a high tech communication aid (proloquo2go and iPad) and limited speech.

Hi all I can’t shift this feeling that my 13 month old son might have autism I feel like I am constantly analysing everything he does and I feel so guilty about it. He has met all his milestones so far rolling, sitting, crawling and walking. Not long after his second birthday I noticed he doesn’t often respond to his name, he has recently started arm flapping a lot for no particular reason and shaking his head a lot. Am I just being paranoid ? I am a worrier I always have been and he is my rainbow baby and have worried about everything from day 1.

Hey everyone, how are you all getting on this week?

We have some pointing emerging which is positive!

Hi everyone am so sorry haven't posted in a while! Lots of new posts to catch up on. @Scratchybaby @carriebradshawwithlessshoes thank you both so much for taking the time to detail your experiences with ABA. I know when I initially had concerns I read about it and thought "oh wow there's the magic bullet" but I hadn't even thought about whether my child would have the right temperament for it. That's real food for thought, thank you.
And many thanks also for the candour about mental health and donning that metaphorical battle armour @carriebradshawwithlessshoes @lingle I feel all I can do some days is just leave the house without having a major wobble. I think I am getting there but you're right it's like the whole thing has changed me. I feel like I've looked behind the curtain now and can't unsee (unthink) things. I find myself looking at other people's children (subtly I hope!) and thinking oh my child does that thank god, or alternatively oh no my LO has never looked at me like that oh god oh god cue tailspin. Glad to hear it's not just me anyway x

@RiverRock22 Hiya am so pleased to read your update about pointing you must be delighted!! Is that something you've been working on or has it just sort of 'emerged'? We have got pointing but have always felt it was a bit narrow, a lot of pointing at things they want but not as much to share...i hadn't even realised the importance of pointing til about 12 months ago and now it's all I bloody think about!! Argh to be ignorant again!! X