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.

Well it is very early days with the pointing. It is the actual function of using the index finger to name things in a book.

I'm having a bad day today, it is really frustrating, she doesn't seem to understand anything I say. I don't know if she is ignoring me or if it is simply she doesn't have a clue what I'm saying.

We have a few more naming word for (not used to request just to name). I am at a loss as currently her expressive language seems to be better than her receptive language which is quite strange.

I don't know if there is still a listening problem or not. She had been with a SALT and an OT and both seem to be of the opinion her cognition is good (based on non verbal activities like puzzles, matching games, sorting games etc). I'm at such a loss.

@Miserabletoddlermum also, I notice pointing so much. Out in shops if I see a baby point I get jealous of how much more advanced they are than my DD.

Also, the Mumsnet logo is of a child pointing. Talk about hitting where it hurts! Lol

@RiverRock22 yeah I know that. Because I now carry around a mental checklist of milestones like a human, walking, talking child development textbook I'm like constantly keeping score of everything both my own child and every child in the vicinity is doing at all times. And as a result I fly between reassurance (rare), bewilderment, panic and just plain old envy in the space of a few minutes. That's terrible isn't it. I don't like being this person. I'm exhausted by it all.
FML I didn't even notice the Mumsnet logo 😂

Regarding little river rock I think it's really encouraging that specialists have noted her cognitive abilities, I would be really reassured by that. Is it possible we are talking about a receptive language delay then do you think? Did those remarking on her cognitive abilities have a take? With the finger pointing I think now the ball is rolling the rest should follow. I was reading the early start book and it has a whole section on teaching pointing. Have you seen it?

I'm sure you've got people IRL telling you this but you sound so dedicated I hope you know what a good job you're doing. Take it easy on yourself

@Miserabletoddlermum thank you. It doesn't feel like it though, I have another baby and general house hold chores to do and every spare minute I'm not doing floor time with her I feel guilty. Then she doesn't take me on with it and I feel sad, angry, rejected etc. I can honestly say this is the hardest and most emotional part of my life so far.

Just seeing some of the posts reminded me of two things.

With pointing, we did teach DS to point, as part of the ABA programme. He was never a kid who avoided physical contact so I wasn't concerned with physically helping him shape his hand, and treating a point like a "please" - holding out on giving the requested item until he pointed. He didn't seem to mind and it's worked, to a degree. But I was told the physical act of pointing, even if it's taught, can still help with joint attention and communication skills.

The other thing I remember, when DS was around two and a half, was how he had a thing where he would pick through piles of socks, passing each sock individually in front of his eyes, one by one, and dropping them into a new pile and could happily do this for 10-20 mins multiple times a day (presumably a form of stimming?). When he didn't want to engage with activities I set up (which was most of the time in the beginning tbh), I'd actually get involved in this with him and add bits of narrative language (but not interrupting his flow too much). But this was at least a way of getting into his world - I think sort of like mirroring him, to demonstrate we could speak the same "language"? I'm sure all of you have tried everything from every angle, but it struck me that the times I meet DS where he is at have often been the most successful at getting him to open up to new things.

And I hope the following reads as encouragement (and not simply bragging) but DS today has been singing songs with me all day, and he's not a bad singer considering he only started a couple months ago! But the boy whose only self-generated language at 2.6 was to say "beeth" to ask for a "biscuit" is now singing songs with me, and changing up the words to include his own name in the song, or sing Happy Birthday to his raisins 😂Hang in there everyone, it's hard in the early days and while I know every DC is going to be on their own path, it's also possible for many DCs to make some amazing leaps in progress when you support them early, as you all are clearly doing.

Ah that's great @Scratchybaby engagement from them is just amazing isn't it. My little one was up early today and is fresh and rested (as rested as one with sleep apnea can be 😅) and she has been bringing me books and I've been chatting through them with her and she has been pointing things out as well. We have some joint attention (or eye contact) I find if I read very slowly and dramatically up to a 'point' it helps her to engage.

A great trip from @carriebradshawwithlessshoes was to put subtitles on the TV, we don't really have it on much to be honest as she isn't massively into it. She does seem to like Mr Tumble though and I put the subtitles on. Today we read a book that had 'rawr' in a speech bubble and she pointed to it and said it so hoping that is a new skill!

We have had hand leading emerge over the weekend, any one further down the line able to hi e any advice and/or tips on this being a pre-cursor for speech?

@RiverRock22 yes, hand-leading can be a form of communication, but it's sometimes also viewed as using you as a "tool" to get what they want. Our DS took my hand and put it on the cupboard to get biscuits, and only sometimes said "beeth" once my hand was on the cupboard - you could argue he was either pulling my hand to tell me he wanted a biscuit, or was using me as a tool to get the biscuit. What it does mean is that it gives you a chance to prompt for some more targeted communication. So if your DD is leading you to a cupboard for example, you can then ask her what she wants, give her the word for it if you know what she's after, and ask her to try saying it. You could even try getting a point in there. That's literally where we started (along with filling in words in books) at 2 1/2-ish. Getting biscuits was our foot in the door to everything else!

@RiverRock22 hey, how you doing? I think @Scratchybaby has summarised hand leading better than I could. How is she leading you by the hand? Just taking you to something or using your hand to do something for her? Overall I think it's about communication and communication is the goal isn't it 💐x

It's a mixture of leading me to something and also putting my hand onto something and then standing back. I give her words like 'open' and she is trying to say them so hopefully a start.

She is adding words everyday, unfortunately it is all nouns (unless prompted she doesn't use open/up etc).

Her eye contact and interactions with us have gotten better and her receptive understanding is now starting to stretch to 4-5 commands. Mostly routine but I say something like go and brush your teeth at any time of the day and she goes to the bathroom.

I feel if we can crack joint attention that'll be a real catalyst going forward.

We've had a few little stride forward over the last couple of weeks so I'm happy but still frustrated with some things. She is really poor at responding to her name and that is really annoying at the moment so I'm trying to work on that.

I have been calling her and celebrating when she turns but it's only happening 1/5 times. I don't think she realises her name means her so I've been reciting it in the mirror with her and pointing to her when I say it.

We ve just had our second portage visit and today he was happy playing with them for 45 minutes, did loads of hand leading with them and made a few sounds for her. It seems quite similar to what a speech therapist will eventually do with him (who knows when the appointment will be) so it's been really good for him.
They suggested we try for DLA so need to get that printed and sent off this week, apparently no harm trying then I ll appeal if they reject it.

Hey all, how have things been?

That's good news about portage @1990shopefulftm unfortunately they don't offer it in my area.

Has anyone done the Hanen 'More than Words' training/implementation? I'm trying it now. What parts worked best for you?

Hi everyone, how are we doing? I am sorry I haven't posted for a while. We have had a bit of a speech explosion here (hope that in itself doesn't disqualify me from the thread). At first was so delighted and thought it might improve some of my DC's other little quirks but unfortunately not, it might have only brought them to the fore more. I feel nuts saying this as they are only 2.2 but the aggressive behaviour and sensory seeking impulses are becoming really hard to deal with. Had the HV check and they said nothing is wrong (at least not at threshold for referrals etc). So am continually cycling between a feeling of being gaslit because clearly something is happening; other times feeling insane because others are telling me it's just their age/personality etc. DH won't engage in conversation about it so am feeling a bit low from having nobody to confide in and just utterly exhausted from practicalities of caring for such a little livewire! God that's a miserable update isn't it. I guess we are one step forward one step back ha! Anyway, how are we all? Sorry not sure who to tag hope this picks people up on notifications @RiverRock22 @1990shopefulftm @Felinewoman @Felinewoman@Scratchybaby

That sounds hard, DS is still very much minimal words but more sounds, he is also very sensory seeking, definitely a live wire (I wouldn't say that he's aggressive as such at this point) and got a paeds referral as he got 230 on his asq-se, did the HV do that particular questionnaire as it has questions that relate to social and sensory issues on it? (He had this done at 25 months for the referral so I don't think your nuts to suspect anything, the opposite, I d say listen to your instincts).
DS has been at nursery for 2 mornings for 3 weeks and despite his communication difficulties, he loves it, keeps to himself but is doing well with other children.

@1990shopefulftm so good to hear from you, thanks for coming back. Sounds like your DS is doing well - nursery is such a big thing and it's sounds like they've transitioned in flawlessly. My LO started with one sound then a few more and then it really opened the door for words, hope you have a similar experience. How is portage going? Did you hear back about your DLA application?

Yes we did the asq se but he mustn't have registered high enough on it to warrant any further action which is frustrating, but I do get it. They flew through the 'competencies' based asq and when I list my worries they just don't seem to be 'severe' enough for professional help but they just seem so different to their peers! I did say to the HV that too much of this screening material (mchat, asq se) is aimed towards the sensory-avoidant child when I have the exact opposite so I do think kids can fall through the net on this!! I am hoping things will calm down with age, it's just at the moment I feel like I am living life walking on eggshells!!
So, so nice to offload really appreciate a listening ear@1990shopefulftm xx

We ve been in a scenario for a year where he is stuck on about 5 words so hopefully there ll be some progress soon.

He's been on the speech therapy waiting list for 8 months now and no appointment yet but his portage worker has given us as much advice as they could and he still has a few more visits with them.

DLA is over 16 weeks wait now so I think it's about mid September before we know if he's eligible or not.

Did they tell you what his asq se score was so you know if there was actually anything flagged and in fact it was just not enough yet for a referral, in our area you still would need 150 points to get one and that's actually a few things flagged ( I did actually speak to 3 people on the HV team before the 3rd one was happy not to dismiss us).

Obviously every child that's sensory seeking is different but someone suggested looking up heavy work that can be calming for them, there's a few NHS sources about it online.

@1990shopefulftm again thanks for replying. We were 'stuck' too for a while, not quite a year admittedly, but it did feel like we had zero progress. It's so frustrating on all sides. I am hoping your salt appointment comes through soon 🌹. I heard that if your DLA is refused because of what I can only assume would be lack of appropriate evidence or whatever, then if you reapply at a later date and it's approved then they have to backdate it to the initial request date. Have you heard of that? If you are accessing portage and have people on your side though it sounds like you might just be granted it off the bat. I hope you are successful with it.
I haven't a clue what score it was to be honest!! Although I think from the numbers you mention above we might have done a different one because the cut off was much lower, like 45/50 I'm sure (I have since handed it over and I'll never see it again!). Do you know the one you did? (Are they different in different local authorities, I have no idea?!?). I have been told it is very much an immaturity thing at the moment. I am starting to think ADHD is a possibility, but the thing with that is that is that it is a watch and see thing I don't think we'd get down an assessment route til school?!?

We scraped together for one private SALT assessment so I ve sent that to DLA with his referral and portage paperwork which I m hoping is enough, otherwise I will definitely appeal.

It was the 24 month asq se we did, his score was written in his red book and paperwork, I think i was actually around 50-150ish that they would "monitor" but above that they accept referrals.
Yes I ve heard of children be referred for ADHD once they started school.
I think the fact I was upfront and disclosed I have DCD/dyspraxia and there's ASD on both sides of our family also helped get DS referred to the paediatrician already.

@Miserabletoddlermum this sounds like us when DS was that age! HV not worried (though they did the 2 year check remotely due to Covid, so that may have played a part) and DH smirking that I was getting hysterical about nothing. DS was/is a sensory seeker rather than avoider too, so he was cuddly, loved crowds and noise, and made lots of eye contact at least with us, so it was hard to nail the issue down beyond a speech delay when trying to explain it to others. So it was brushed off by the HV and by family with "oh he's a boy" at the time. When the promised explosion of speech didn't happen by 2.5, then I was finally taken (a little) more seriously and eventually/finally on a waiting list for an autism assessment.

Not that this is any guarantee for where your path leads you as all DCs are indeed different and develop at different speeds! But your post brought back those days pretty vividly.

During that period, I was quietly suspecting autism as, beyond the obvious speech delay, I'd noticed the lack of pointing, the lack of response to his name, sensory seeking and what I (mis)understood at the time as a really extreme stubbornness in certain activities. So without anyone's buy in I started researching and learning about things I could do with DS that would help him progress on my own, without their help. There's another thread somewhere asking "in hindsight, what would you have done differently" and my top three recommendations based on where we are now that DS is at the grand old age of 4.5 are:

• for speech, the Hanen materials or, if your DC is using delayed echolalia, then the Meaningful Speech resources
• for social/communication skills, the book An Early Start for your Child with Autism
• for sensory seeking, the book The Out of Sync Child.

All of the above have tips that are great for children with or without ASD, so if it turns out to be "nothing" the worst you'll have done is up your parenting game a bit. And if you're surrounded by people telling you you're overreacting, and you don't think you are, they are also full of genuinely effective tips you can implement before you manage to get any sort of professional help, or indeed alongside it (our OT recommended The Out of Sync Child for example, which is aimed at children with ASD and/or diagnoses other than ASD).

@Scratchybaby Hiya thanks so much for replying. Your message really resonated with me, am sorry nobody took your initial concerns seriously that's really tough. (Obviously I know that feeling too sadly!) You definitely hear of children passing the HV checks but things coming to light over time (or as in your, and many other cases,those niggles being there just not being taken at your word!!).
Oh geez I don't know what to do. Its tough because they don't really meet the ASD metrics (???) for their age. So we had pointing within 'acceptable' timescales (e.g. before 18m); name recall; the 'look backs'; receptive language fine (only area have ever been 100% confident about); appropriate play (weirdly imaginative in fact) etc etc. Obviously I'm not saying these things rule ASD out, but as far as screening and referral goes - at present age - it feels like nowhere to turn. Could I try the GP for the sensory stuff?? Would I be laughed out for taking a just 2 year old along for sensory seeking??😫
Anyway, enough from me there. Am so glad of those book recommendations, thank you- I need to get the out of sync child - has it worked for you? Where are you up to with assessment stuff? Sorry if you've already said upthread - is your LO in school already or starting in Sep? X

@Miserabletoddlermum at this pre-school age I'm finding that any appointments I get from NHS/LA sources involve giving me pretty rudimentary worksheets or recommended reading anyway, rather than actual hands on support. Maybe you'll have better luck, but for example when we got a referral for speech therapy via the NHS it took months to get, was literally one video call with me (DS's presence not required) and it was just recommending reading for me to do activities at home - most of which I'd already read by that point anyway. I have even less faith in a GP providing useful advice. I don't have any problem with the concept that parents need to play an active role in their child's development, and that we're their "best therapists" as I keep getting told, but chasing after support via those channels has just been a waste of energy so far. Hence that reading list.

The Out of Sync book is great. We haven't quite nailed down exactly DS's sensory profile (we've only just started working with the OT) so I can't claim we've absolutely cracked it yet, but it's helped. The book definitely helped me get a better understanding of how sensory differences can impact the way a child learns, and it - and it's follow on book The Out of Sync Child Has Fun - has provided some really good recommendations for activities that help DS with his sensory seeking behaviour and ideas for helping him focus longer.

@Scratchybaby oh dear I'm not sure I'd have been that thrilled about a SLT appointment where they didn't even meet my child - seems a bit daft but I guess they have to start at the very beginning by recommending resources (even tho so so many parents will be way beyond this point at this stage after such a long wait!) I hate that these services are so stretched and underfunded. I suppose the end goal is to be 'in the system' at the very least. We have been referred for salt (was actually our GP who did this, HV not cooperative at all! Maybe there's hope for us going down this route) Reading list is much much appreciated thank you 🌹have just ordered the out of sync book (I have the others already, am building quite the library!!) X

@Scratchybaby do you mind if I ask, did you need a diagnosis before seeing an NHS OT or is it something you ve accessed privately?
I needed OT myself as a child but it was incredibly limited so I m not sure whether to push for a referral at this point before getting a diagnosis.

@1990shopefulftm I went private, and an official diagnosis wasn't needed. In the initial call I just described DS's developmental history and she said "yes, he sounds like my kind of boy" (❤) and was happy on this basis to at least undertake an observation and provide some initial recommendations, and we took it from there. I get the impression that this is normal, especially for younger children who may simply still be waiting for an assessment.

We get advice from the OT, based on nursery and home observations, on things we can do at home and nursery to help DS, but not direct hands-on sessions, so it's not as expensive as I thought it would be (I've just paid for her time to conduct observations, produce a report with recommendations, etc)

I don't know if getting a referral via your GP would produce any more hands-on help than I've managed to get, so can't advise unfortunately. But I'm glad we didn't wait because the OT's advice has been really valuable and god knows when or what we would've had via the NHS. DS has already been waiting almost 3 years for an ASD assessment, so who knows how long OT support would take!