What might this be?

[AliCanTea]

Hello - looking for some support from people who’ve been there. DD is 21 months old and finds it very difficult to form sounds to speak. She mimicked us really well at only a few months old and by 6 months was saying ‘mum mum’... but then it stopped (I never noticed particularly when or why). Now she has no words and has never uttered a consonant (other than the early m sound). She didn’t/doesn’t babble like other kids but makes a nasal humming sound.

Her receptive language is great and shared attention very good too. She knows several Makaton signs and is desperate to communicate. Lately she has been trying animal sounds very enthusiastically but all with her mouth shut apart from ‘meow’ which is said as ‘aaaa’. She is trying ‘Mama’ too but it comes out as ‘Hm m’ or ‘Ah hm’.
Any sounds or attempts at words that she makes with her mouth open have to be forced out as a kind of cough or are vocalised very nasally - no clear throaty sounds if you see what I mean. She can vary pitch when humming though.

I just don’t know what to make of it as all her other markers are fine - she even recognises lots of written words and will do the sign for that word if I write it on a piece of paper. Watched her complete an 8 piece puzzle by herself the other day...

We are being seen by a Speech and Language Therapist so I’m really glad we’re on the books as I know it can often take a while. They’ve confirmed it’s not usual development but I guess can’t say any further at this stage. We have a few exercises to try at home.

I just wondered if any of you had any ideas or wisdom? We’re about to move house and I have no idea what the future might look like - if we’ll need a specialist school, for example.

I wish I knew what might be causing it as I feel I could help her more if I did.... She can stretch her tongue right down to her chin so I don’t think tongue tie... I’ve never seen her lift it up though. She had a basic hearing test and results were fine (they didn’t do the headphones part of the process sadly as ran out of time - new Covid measures had messed up their timings)... She had severe and painful reflux until she was 1... could that have caused scarring? She also had a traumatic hospital experience when she was 11 months with a horrific nurse who woke her up in the dark by flashing a torch at her and then tried to force her mouth open and inject medicine - frankly I could understand if she never wanted to open her mouth again...

If you’ve got this far, thank you! I should probably add that my brother has a learning disability and it does run in the family to some extent... but DD’s progression is very different from his.

Any insight would be so appreciated, thank you xx

A few things I missed, despite length of post!! She points and has done since maybe 10 months. She is a very tricky sleeper... honestly I don’t know how we’re still functioning. Eats food now but still completely obsessed with breastfeeding - no idea how I’ll wean her without huge distress. Hard to tell how she is with other kids due to Covid and not having any siblings or cousins... but at our local outdoor toddler singalong, she’s the one who only sticks it for one song and then scurries off around the park to collect leaves and bother squirrels...
Has extreme separation anxiety... Always wakes up crying unless in my arms... I hear parents talk about hearing their kid wake up and just start babbling and playing in their cot and it’s completely alien to me!
Imaginative play is good - her cuddlies get fed and given drinks and laid down to sleep...
Right, I’ll stop now

Trying a bump...

Hi @AliCanTea

I think it could be lots of different things but just wanted to give my son's experience because it involved things I'd never heard of or even knew were a thing! He's now 5 but has been seeing SALT since just before he turned 3. He had hoarse and nasal speech and had few words at his 30 month assessment. Therapist suspected something structural was wrong - initially suspected a 'hidden' cleft palate which is in the soft palate.

He had a videofluoroscopy which showed palate all fine but he has something called velopharyngeal insufficiency which is essentially where there isn't enough tissue at the back of the throat, where the soft palate touches, which allows air to escape through the nose - causing nasal speech, and also hoarse speech as it means he has to work harder to push air up. It is a 'craniofacial abnormality', he also has a small ear and this, and a few other things, led to him being referred to genetics and then being diagnosed with a chromosome deletion.

Have they suggested investigating a physical cause?

Thank you so much @roughtyping - that’s really interesting and I’d never heard of it before. How is he getting on now?

No one has suggested a physical cause but I’d like to know a few things to ask about, even just to rule them out.

@AliCanTea he is doing well however hasn't seen speech therapy since February as they discharged him thinking he was about to have an operation, which didn't happen. Back on waiting list but no face to face appointments at the moment. We felt his speech improved lots in terms of vocabulary over lockdown, however once we started seeing other people again it was clear that they were having to relearn how to understand him, which has caused some behaviour problems for him - he must get very frustrated. This year has been really hard emotionally (he was only diagnosed in January) but we feel very lucky that he is so healthy.

I would just ask the question, is there a chance it could be something structural which is causing your little one's problems? I think we were really lucky to meet a good SLT who picked up on it quickly.

Also I just re read your initial post re reflux - my son had a lot of trouble feeding when he was small, only taking small amounts of milk, couldnt latch to breastfeed, couldn't be laid down flat and was often sick through his nose (he still is sometimes - special mention to spaghetti coming down his nose!) - we now know this is all linked to his structural issues.

@roughtyping Thank you - that’s interesting about the feeding. DD struggled in the early days too and gulped in a lot of air. I’m going to GP on Mon and will ask about structural issues. Will put it to the SALT too.

It has been a tough year, and I’m sorry it’s been particularly so for your family. Great that your DS has gained vocabulary though! Well done and I hope you get the surgery appointment soon.