Just need a chat, worried about my son

[Ac871]

I just really need to chat and vent.
apologies if this is all over the place.
My wonderful 5 year old darling son was born with a rare type of cleft, a laryngeal cleft. His fantastic consultant was adamant that this type of cleft doesn’t cause any speech issues, however it became apparent quickly he was massively speech delayed. He is now diagnosed with speech sound disorder.
Other parents I’ve spoken to with children with the same cleft (very few and far between) have experienced the same. He has been assessed by the cleft speech therapists who referred him to the community as a toddler and he has since has expensive speech therapy both privately and with the NHS. We are currently on a break between blocks and waiting for a reassessment in March with the SALT team.
Since starting school it has become extremely apparent that his speech is nothing like his peers, I am the only person that can understand him. His teacher is concerned because she says that from her observations there are many sounds that he physically just can not make. Like physically, he just can’t do it.
My heart absolutely breaks for him, tonight I had to watch himself punch his own head repeatedly and scratch his face because I couldn’t understand something he was saying (which is rare, I’m very tuned in to his language) I am sat in bed sobbing because I just don’t understand and blame myself entirely.
He is also suspected for some sort of neurodiversity, which just doesn’t help at all because he gets extremely angry and his little mind is always away with the fairies. I feel for him on a level I didn’t even know was possible until I became a mum.
The plan with school is 1-1 phonics intervention to try and help and I am looking into seeing the consultant who did his surgery at 6 weeks old privately as he has since been discharged from ENT in the NHS.
I am so desperate to help him. I don’t even know why I’m posting this. I just needed to get it all out.
I know this is so niche but is there anyone out there with any suggestions? I would quite literally walk to the end of the earth to help him.
Thank you x

Sorry I don't have any, but he has a big asset in you as his mum. Your love for him is very clear. I hope you can get more suggestions here. Keep pushing, the squeaky wheel often gets the grease in NHS terms.

Look up the Makaton society and see if they can help you find someone near you that can help you with signing.

Widget symbols will help your son communicate the things he wants to say too.

These things will hopefully allay the frustration whilst his speech is being looked at.

Bless you both, it's very upsetting to see children frustrated like this

That's so very difficult. Sorry you and he have all this to deal with. I agree with the poster above, it's good he has you in his corner.

What charities are there to support this area? They are often full of very experienced parents plus perhaps you'll meet older people with similar clefts which might be hopeful.

Read up on research and see if there are any research projects he could be part of too.

How horrific for you both.

Have you tried googling the name of the condition and specialist consultant UK? In the past, I suffered from a rare disorder and I emailed the consultants I could find who specialised in it. A few did reply. They can ask you to get a GP's referral to them and that's how I would take this forward.

What are other parents who are a bit further along the journey saying about language development? There might be specialist therapists who would be able to offer advice if you try Facebook groups, or who will know of colleagues who can help.

I would also look into play therapy and alternative ways to communicate in the meantime, like those boards? Don't allow anyone to treat him as they would if he was selectively mute and needs motivating.

You will need therapy yourself at some stage. This is so hard.

Something that doesn't require speech is equine therapy. It might be worth considering.

I don't have any advice girl i just wanted to say how sorry I am, it must be so tough

My dd has asd so is still pre verbal at 5. She's trying to communicate with me though and I feel so shit that I can't understand it. I always smile and get to eye level to encourage and remake the sounds she's made. We're still working on it but I think she appreciates it 🥺

I wonder if, when your ds is trying to say words, you could do the same?

Like say 'let's work this out together darling' and crouch down and make the sounds he's making until you get a sentence? (I make eye contact and smile reassuringly)

I think it'll confirm to him that you're trying your best to work with him. Because he knows how much you love him and that he can trust his mummy ❤️

You're doing amazingly. It's so hard but its clear how much you love him. I agree, there pain you feel for your child is like nothing else xx

How well do you feel the school is equipped to support your son through this?

💐

Is he summer born (April-Aug)? If so, you could ask the school if he can repeat a year to buy him some time.

My son had a speech disorder which meant no one apart from me could understand him until he was 4.5/5. Even basic words like his name wasnt clear. He started reception the year after his peers and it’s been amazing for him.

His progress was slow until we met an amazing speech therapist and he hit an age where he could really focus on the support. Now you’d never know he had a speech disorder.

Have you got PECS cards? These made a huge difference to one of the kids I used to work with who struggled with speech and got frustrated when we couldn't understand her!

Google the condition and look for specialists around the world

And I am so very sorry - I have been you and my best advice is to not look beyond a week at a time - don’t think about the future but instead focus on the things you can do now

The other thing is your son will keep on surprising you - it won’t be as gloomy as you think. He will find his tribe of friends. Also look in FB for groups that focus who’s particular condition - these can be a lifeline and usually a wealth of knowledge that the NHS never seems to have a clue about!

Be kind to yourself - you are a fantastic mum amd he is lucky to have such a caring person

He sounds quite similar to my son. He does not have a cleft but was born with hypotonia, a floppy palate and velonasal insufficiency. He was very late to talk at all and it was mostly vowel sounds ...we could understand him at 5 although his speech was also very delayed...no one else could.
We were offered an operation to improve his palate and to stop his drooling but as it involved stitching down his tongue, which seemed awful, we declined.
Progress was slow... I think he was 10 before his speech was understandable to most people but it did slowly improve.
He's an adult now and you would not know how bad it was. He does sound slightly slurred (a rude randomer in a car park queue recently told him he was drunk!) but he is perfectly understandable. He also has autism but for my son, it means he was happily oblivious!
I would push for a medical review.. it HAS caused issues and so their original prognosis was obviously incorrect :/
But just to give you hope...I never thought my DS2 would sound remotely normal but as an adult.. he does!

Consider applying for an EHCP so you can formalise the support he gets at school. This could include speech and language sessions, 1:1 support with any areas of the curriculum where he is falling behind, support with social skills etc.

I would also suggest asking the school to introduce sign language such as Signalong to support his language development as it could help with his frustration levels.

Is using an iPad/ speak for yourself software to augment spoken communication a possibility? niederfamily.blogspot.com/2012/01/search-is-over-weve-found-our.html

No advice, just a bit of solidarity as a mum of a kid with a speech sound disorder. Most of the time it's OK, and then you see how frustrated they are to not be understood and it's so sad. I'm really proud of him and I feel guilty whenever I wish things were different because I wouldn't want to change him. You are doing amazingly, have your wobble tonight, feel what you need to feel and tomorrow- get up and keep going. X

Just wanted to offer some hope, my child was in a similar situation with struggling to be understood due to severe speech difficulties and I too thought they were neurodivergent. However after (admittedly a battle and seeing lots of various specialists) we got a good SLT and along with a very committed teacher the progress was amazing. Now their speech is almost caught up with their peers and as the speech came the signs of neurodivergence disappeared and they’re a happy kid with a great circle of friends.

Oh wow thank you all so much 😢 it’s actually made me a little emotional reading all these lovely responses. Thank you all so so much.

Today I am going to-

• contact the consultant who did his surgery at 6 weeks and get him reviewed by them (he is a professor, so we were not put under him for appointments but can see him privately, I’ve already got an open referral letter for him).
• contact SALT and let them know how much he is struggling.
• write to school more formally as he has been waiting for speech therapy in school for the longest time and I feel like his case is just essential.
• I may also book a non urgent GP appointment to discuss everything as I’m just feeling at a loss.

I have already reached out to support groups, in terms of specialists, there aren’t any for his cleft type, just general cleft doctors.

Thank you everyone. He’s gone into school this morning without a clue that his mummy is ever so worried about him.

xxx

Oh and in terms of speech aids, we have tried everything- he looses interest in things very quickly.
He can somewhat talk, but it comes out like babbling. I feel awful saying it and I’m not comparing, this is just so people can understand our situation, our 16 month old can say words more clearly than him 💔 it just breaks my heart. He can say some things very clearly but a lot of speech sounds he just can’t physically make.
Thanks again everyone

and oh last thing, I am still to connect with someone in the UK who knows anyone with a laryngeal cleft, we have only connected with parents in America.

Just wanted to update
We have a team around the child meeting being organised with school and his speech therapist.
We have set up an appointment with the consultant who was his NHS consultant but we’re seeing her privately.
I feel more positive, despite a further regression in his speech.
I’ll always fight for him!