Non verbal son - feeling down

[doadeer]

My son is 20 months and has no language.

I've chatted, sang, everything with him since he was a day old. I've tried my best so much but it's getting me down and I'm feeling like a failure. He doesn't respond very well to commands, won't point at anything. He often opens his mouth and shakes - but doesn't try to form words. He babbles a lot and goes hmmmm constantly. We read a lot, about 20 books a day. He doesn't enjoy most toys he just likes to move small items and collect them.

I spoke to HV and she was rubbish, we've been referred for hearing test which is in a few weeks but I really don't think it's that.

We are going to see a private paediatric consultant to get advice as he does have a few autism markers but I'm not sure.

Please can someone help, what should I be doing to help him? Having a real crisis of confidence.

My son was pretty slow to start talking but really turned a corner around 2.5.

If you can afford a private speech therapist or similar do so. We got referred for a hearing test 8 months ago and it's been cancelled three times with nothing in sight.

We've been taking him to a private speech pathologist since Feb anyway.

Yes we can afford that. I don't suppose you are London based?

I desperately want to be able to help him but I'm not sure how.

What did your speech therapist do?

That must be very worrying and frustrating. It does sound like you are doing a lot and the pead should be able to help work out what's going on. Have you raised your concerns with your GP and asked for a referral through the NHS too? A private SALT assessment? If you suspect autism then look ASD resources and see if any of those make sense to you?

Try not to despair and remember it is a marathon not a sprint when we have children who have challenges. Take care of yourself and enjoy your son, he is so tiny and who knows what's ahead for him (even if he does end up with a diagnosis).

Thank you for that. I feel so guilty, he has the most beautiful disposition, full of smiles and cuddles. He's very content and happy. It's just lonely for me I guess and I'm worried how he would manage in social environments

A private SALT with ASD experience should be a good start. They can look at communication as a whole not just speech. Many activities at this age will focus on shared attention.
Two books I would recommend for good practical advice you can follow are Hannen’s It Takes Two To Talk and More Than Words

I've had a really crap experience lately with NHS so I think we will pursue the private route for the time being... I'm very lucky we can afford it and we have insurance too.

@Mycircusmymonkey

A private SALT with ASD experience should be a good start. They can look at communication as a whole not just speech. Many activities at this age will focus on shared attention. Two books I would recommend for good practical advice you can follow are Hannen’s It Takes Two To Talk and More Than Words

Thank you ill buy those books now

Please don't worry in advance about things you just can't know yet, you will tear yourself apart. Some great advice to find a SALT with ASD experience. He sounds adorable!

IME even if you get referals for NHS it will be slow going and no actual therapy/services to help your son progress. If you can afford to engage with private services that will work on a programme of intervention with your son then that is where you’re time and money will be better spent.

Continue to follow the NHS path in the mean time though if you feel an ASD diagnosis is a possibility but expect little in the way of meaningful interventions

What's his understanding like? Will he indicate preferences if you give him a choice?

My daughter had no words before 2, but she understood everything. When she eventually started talking her vocabulary was enormous and she spoke in sentences very quickly.

I think he's very young for speech therapy. I had a therapist for my DS started at 2 years 8 months and it was a struggle to find someone who would work with him, it did help a lot though.

The main thing I learnt from my dealings with the NHS and the council run workshops was to simplify. I would happily read the Gruffalo to DS at your DS' age and he would sit and look and appear to be listening, but it's all just noise, he couldn't connect any of that to what was going on.

DS needed to understand through repetition. A baby book with a few pages is better, just a duck for example on the page. Say duck, maybe you quack and point and say duck again. Next page shoe. When you put your shoes on you say shoe. Mummy's shoe. Ohhh green shoe pointing at your DS' shoe. Single words, label it. Add another word. Dog, brown dog, small dog, dog woof. Repeat.

My ds didn’t speak until he was 3 , after that I couldn’t stop him talking... he’s now 12 and still talks constantly 🙈 I’m looking forward to the teenage years lol 😂

www.afasic.org.uk/

Some useful info on here and they have a helpline. Time is of the essence. (Am speaking as a mum who picked up DS’s speech was behind at 2yrs, and pushed and pushed for support/therapy). The earlier you can get help, the better. Don’t take no for an answer, if they argue too young for help. You are your son’s advocate and it will be a battle. Go privately if it speeds things up. Good luck!

Firstly I have no direct experience. A colleague's DD had speech therapy due to a delay and she told me how she had to become extremely mindful of how she was communicating to her DD. Speaking slowly and clearly, one or two word sentences - very simple. No long fast sentences.

Thank you everyone this is all really helpful

His understanding is mixed. He doesn't indicate very much, ie if he wants a drink. But if I tell him not to climb on the table or to watch his head if he is crawling under something he understands this and will respond.

I do try to use simple words. If we are reading six dinner Sid I try to point at the cat and other items on the page as we read and encourage him to do the same. If I got him a very simple book with just animals for example he wouldn't want to read that. He isn't interested in cbeebies, he only likes to watch proper films. He laughs at the funny bits and has favourite characters. He's a very complex little boy in terms of his likes.

It's so hard trying to decipher it all.

My son was non verbal until after the age of 3 and diagnosed with ASD following a SALT referral, it took pushing the HV for local speech support at 2.5 after concerns being mentioned since 1.5. They weren't really interested prior to 2.5 as some children do speak later than others. Nursery referred to SALT as soon as he started age 3. He is now verbal age 7 (full sentences just some quirky sentence construction). He did Picture Exchange Communication with his SALT and his speech developed from there. We also did lots of speech modelling during one to one play time with toys (you talk about play object and what they are doing to build language). We first realised it was working when we heard him talking to himself whilst playing in his room, he was trying out sentences and it picked up on the baby monitor.

Do you know a website where we can find private speech therapists as I'm looking into this. As you have mentioned, the NHS route might be much slower especially with COVID on so best not miss valuable time and get the ball rolling. Thank you advance and would really appreciate any info.

Baby Makaton with you providing the words also helped early out for drink, eat etc..

I'm sorry to hear you're worried about this OP. It's tough when your DC are tiny and can't communicate!!

DS1 saw this lovely speech therapist based in St Albans (but possibly everything would be done via Zoom at the moment anyway?) - she was very thorough and reassuring. He did have hearing problems too but she gave me lots of tips on encouraging him to talk (or at least communicate in other ways!). She specialises in children with ASD so might be helpful for that aspect too.

As a PP has said, I was also told that understanding is the more important aspect, rather than speech - that can come later. As my DM points out, I didn't speak a word till I was over 3, but by the time I was 4 I'd caught up with all my peers!

Good luck

Thank you 🙏 this is really reassuring, it means a lot. It's not easy being a mum, so much worry!

www.therapy-directory.org.uk/articles/speech-and-language-therapy.html

Go somewhere like
www.londonspeechtherapy.co.uk/speech-therapy-children/

Introduce signs and use lots of visuals photos
What does he like?
How does he ask for it?
Make visual choice boards

He is young but not too young to be assessed

Not too young to introduce signs znd symbols

something like bayley scale of infant deveeopment can indicate areas where needs input
M chat
Ados

My son has verbal dyspraxia, which is one of the most (of not, the most) severe speech disorders that exist. I have 4 children, and I knew something ' wasn't right' when he was about 5 months old. He had other delayed milestones.

I would recommend a good private speech therapist, and maybe OT to see if they can help point you in the right direction. Our private SALT was a god send, every penny spent was worth its weight in gold. However, 20 months is young, they may just assess and then suggest monitoring for a while.

For a while I spent most of my time crying, blaming myself and feeling consumed with worry and guilt. I found the NHS so slow and they just didn't seem to get the severity.

I now know that this is just one of those things, no body's fault. It's hard, but we have help. He is a gorgeous lovely boy and I wouldn't change him for the world, but he just needs extra help in life.

Can second the hanen book, though I was lent my copy by our Salt as it costs a bomb! The approach is great, though. Ds2 is, severely autistic and was non-verbal until he was 8 when speaking actually became a special interest. He's a teen now and his language is still very disordered but we can have a conversation of sorts, even if it doesn't take long for him to fly off on a tangent.

I've been surprised how many people saying 20 months (I mistyped he is 22m) is young. I've had this worry that at his 2 year HV check it would be a totally demoralising hour of all these things he can't do. It's reassuring to hear this is still young for speech. I suppose it's his comprehension which is more worrying and the other behaviours around it such as not responding to name. Going to leave another message for private paediatric consultant tomorrow and hope that he can rule out some things it could be and help us get onto a good path.