26 month old not talking no words "AT All"

[Mummyyummy098]

Hi

This is my first post, after searching on here for similar posts but when I think I've found one and read it, it ends up being nowhere near similar, I'm looking for reassurance my DS2 is ok, or advise from parents with same issues.

My DS2 is 26 months and has never said a single word EVER!! He just moans all day long and it's a monotone moaning sound. He dosnt make eye contact with anyone other than myself and DH and he does this rarely only if I sing "wheels on the bus" he stares at me and loves it.

He loves TV (unfortunately) peppa pig, Ben and holly, nursery rhymes
He loves the park (slides, swings, climbing frames)
He smiles and laughs a lot.
Rarely cries if he falls
Dosnt point, fetch or offer toys to us.
He does like feeding me though ( strange I know)
He has been able to stack blocks higher than you could imagine very talented at this.
He does puzzles at lightening speed(wooden shape sorting puzzles)
He didn't walk until 19 months
Will only drink from a certain bottle with a teat,
Has night terrors occasionally but sleeps very well though and sleeps through no problem.
Screams if DH uses a drill but loves the Hoover on
Loves going to nursery but never plays with others always on his own :(
Plays well with toys loves cars and trains and pushes them around the tracks.
Dosnt respond to his name
Dosnt understand anything we say to him.
Dosnt communicate at all, I offer drinks and food to him because he never shows he wants it.
Keeps unlocking the font door and escaping so we now have a new front door and our neighbour has put a wire fence all around our house and 2 new gates as he is so clever at getting out.

I have just had his 2nd assessment with the paediatrician on the 1st visit she said she could diagnose at 2 years if it was autism but at the 2nd visit she said it's too early, been waiting for speech therapy for over 8 months on the waiting list. I'm at my wits end, scared as they say earliest diagnosis is best, but they seem to be fobbing me off all the time and now have to wait until February! I'm worried in February it will be put off again.

Just need anyone who has or had a child that can't say a single word at 26 months to let me know if there child was just late developer and all is ok now with them? Or am I burying my head in the sand and should be knocking down my GP,s door for answers. Don't know what to do for best really.

Some days I think my boy is just a late developer and he is fine then other days I think he is on another planet and don't Even know who I am, my DS1 is a lot older and things were different, never heard of milestones back then and no one cared when they walked or talked and never heard the word autism, now it's like your under pressure for them to be doing everything by a certain day and if they don't they are autistic!

Anyone please help, any advise or similar, would love to hear as so depressed.

[GiddyOnZackHunt]

In itself the language development is running late yes. You mention the paediatrician so I assume his hearing's been checked?
However as a whole it does look like something bigger might be going on. I know that's not what you want to hear, sorry. Early diagnosis is good and although it might feel like they're delaying it is still early days.
It is scary. It throws up so many fears and there is an SEN board in here that can be a huge help. Our local Autism group has an active Facebook presence and I joined ours whilst in the referral stages.

[originalusernamefail]

My eldest DS sounds like your DS . He has just turned three and is for all intents and purposes non verbal. He will occasionally babble and mam - mam (mummy) and me me me when he wants something. He has started to point in the last three months but very sporadic. His eye contact is ok with me but limited with others. We are currently going down the looooong road of testing / diagnosis for ASD. I too feel I was fobbed off with regards to early intervention / diagnosis. I first raised my concerns about him at 18 months .

[Mummyyummy098]

Thank you for replying

The only hearing check was when he was born in hospital, at the 1st assessment with the paediatrician when he was 20months old they basically just banged a toy and because he turned around they said his hearing was fine. There were 4 professionals in the room, paediatrician, HV, physio ( who he was seeing regularly as he was a late walker) and speech therapist ( who we are still anxiously awaiting an appointment from)

I'm definitely calling the HV tomorrow and asking if I go to my GP would it speed up the speech therapy, if not will go private, can't afford it but can't Put a price on his development.

Thanks again for your honesty, I needed the kick up the arse tbh. Tonight I was calling him when he was in front of me and ended up screaming his name and he Disney even flinch or make eye contact, it's breaking my heart to see this.

[GiddyOnZackHunt]

I would definitely request his hearing is checked properly. He could have loss across a range that means he can hear some sounds but not others. My MIL has hearing loss and she cant hear me but can hear DH a bit. I have quite a soft, high voice and DH has a low voice. My NT child with good hearing responds more to me when I drop my voice to a lower register!

[Mummyyummy098]

Originalusernamefail
Thank you for your reply

Good luck with your journey, we were offered a Dna testing which involved blood tests on DS and I bottled it last minute didn't want to put him through it knowing that the chance of it being accurate or even giving any kind of result is so rare, it's a waste of time even HV said they are hardly ever conclusive.

Early diagnosis is everything but getting that diagnosis is like getting blood from a stone! I seem to be surrounded by autistic children at the moment but they are all so severe and most don't leave the house and their parents have all told me the signs were 100% obvious early on. The fact that I'm so unsure if he is or isn't autistic and no one has suggested it that knows him gives me hope still. I will nag the HV tomorrow and see what she says.

Please let me know your outcome in the future or if speech therapy works, are you on the waiting list for speech therapy?

[GiddyOnZackHunt]

I knew something was going on at 4 months btw, guessed at ASD at 4 or 5.
First independent person to say Autism to me at 7.
Diagnosed finally with HFA at 9.
In mainstream school.

[BummyMummy77]

I have to say he shares most of the same traits as my brother at that age who is autistic.

Getting an early diagnosis for autism can be hard. And in some cases it may not be worth the stress but if he is, it will get you the support and financial aid you will need. I'd be pushing to see other people.

It took my Mum over 8 years to get a diagnosis and she had to fight tooth and claw.

Maybe I'm wrong op but he sounds very similar.

And if that is the case, there is so much help and support.

[Mummyyummy098]

Thank you giddyonzackhunt

Sounds a good idea to get hearing checked. I think because he watches tv and cries when DH is doing diy with power tools, we assume his hearing is ok, like you say it could be certain tones he can't hear. I will ask the HV if she can organise this or maybe visit the GP. Think I need to grow a pair and stop waiting around for them to contact me. I think I've been ignoring it hoping it will just magically disappear and all will just be ok.

[BummyMummy77]

And my Mum

[BummyMummy77]

Sorry pressed post too early. My Mum knew from birth he was on the spectrum.

I think with the traits you are talking about people should be taking your concerns more seriously.

My Mum found it really helpful to get a social worker involved and they helped fight her corner.

[Mummyyummy098]

Bummymummy77

Thanks for taking the time to rely,
Is your brother in mainstream school? Is he mildly autistic? Did symptoms get worse as he got older or improve? How is his his speech now?

Sorry for all the questions just really interested as your brother was similar to my boy at this age.

[ohdearme1958]

Mummy, I well understand everything you must be thinking right now and I'm sorry you are having to face such heartache.

I have a 25 year old son who was a silent child till he was approx 8 years old and based on my experience with him I would say you have very valid reasons to be so worried and upset about your wee boy.

My son has a diagnosis of Classic Kanners Autism which means he exactly fits the original description for ASD set out by Leo Kanner decades ago.

What can you to do now? I think if I were you I'd be telling the HV or Dr everything you've written in your posts, plus anything else you can now think of, and say based on this information I'd like you to refer my son back to the paeds.

And If it helps at all for the time being - when my son did start to talk it became obvious he had been soaking up knowledge like a sponge and he had almost a complete nursery education, plus a whole lot more, going on inside his head. I homeschooled such was his difficulties but he'd also learned an awful lot from the TV so I wouldn't be worried about your wee ones love for Peppa and his pals.

You're wee one is learning - he just can't show you right now.

[ohdearme1958]

I'm sorry about typos. I thought I'd got them all.

[BummyMummy77]

He's not in mainstream school.

I will say that he also showed MANY more traits than you've said your boy does. And much more severe ones. Self harm, terrible tantrums, hardly sleeping etc.

He's is with carers in 'school' hours and then with my Mum for the rest of the time. He is 22 now and pretty much non verbal.

It's hard for my Mum for sure but he is the happiest person I know by far and she wouldn't change him in any way. We all feel blessed to have him in our lives. He's on his own happy life course that can drive us nuts but can make us laugh so hard too.

You are your boy's mother and main advocate and unfortunately you may need to start making a lot of noise to get heard. He may very well just be a little delayed or have something else entirely going on but the sooner you have help with it the better.

[Mummyyummy098]

Bummymummy77

Thank you, I think so too, so glad someone agrees, I think the symptoms he has are obviously of concern (though I was over reacting as GP kept saying nothing to worry about) makes me feel like I'm stupid but obviously I'm not and my concerns are justified.

I just felt like I was reeling off symptom after symptom to the paediatrician and she just looked down her glasses at me made notes and nodded and then at the end just said " let's see you again in February" not what I wanted to hear and wanted to scream at her " are f***g kidding me" I said to her " you told me last time you would make a diagnosis" she says "oh no it's still too early" I feel like unless he walks in with a neon sign above his head reading "I'm autistic" I'm never going to get that diagnosis 😩
Apart from the physio sessions which were amazing, we have had no advise on how to encourage his development. Apart from trawling the Internet for help with how to encourage speech etc, we feel so cut off and alone. I'm so sad for your poor mum, it's crazy that in this day and age a diagnosis took that long and only after a fight for it!!

I'm lucky my next door neighbours both their grandchildren are autistic so I can pester their daughter in law when she visits next, both her boys are severe one dosnt leave the house and the one that does when he is visiting we are all pre warned so no one in the street is allowed to mow the lawn or use power tools etc they even take their phone off the hook so it don't ring. I think because I'm surrounded by the severe end of the spectrum I'm in a stat

[mumsimim]

I would like to reiterate what was said already. Detailed hearing assessment is very important. My DD has had communication problem at 18 months. She went for hearing test and indeed she was found to have hearing loss due to repeated ear infections. She was then referred to Ear nose specialist and had tubes put in her ears. We are going for 6 weeks check tomorrow but I already noticed her vocabulary improved dramatically.


Sorry about any typo! English is not my first language

[Mummyyummy098]

Ohdearme

Thank you, a lot of what you said does sound like it could be going on with my little one, he looks like he is taking things in as he concerntrates so hard on everything apart from people. In fact I think he is very intelligent he knows how to find a peppa pig game on my iPad and get it open and play on it, he is advanced in some areas, when he started nursery they said they had never seen a child that young stack 14 blocks tall, there are so many more traits I left out I forgot to mention he hand flaps, he lines everything up and is super strong and he hits me sometimes (I've had bruises) has mega tantrums, I'm putting that down to frustration though as he can't communicate in any other way and it must be so frustrating for him.

He is my world autism or no autism, I love him more than anything he is my gorgeous little man and nothing will change that. Just want him to have the best start possible. I hope I didn't sound like I would be upset if he was diagnosed, I'm upset at not knowing and upset that he could be missing out on vital development opportunities early on and I could be doing more if I knew what I was dealing with.

[WiltingTulip]

mummyyummy my ds was the same at that age. I'm lucky that I'm a professional working with children with disabilities and know some top specialists.

I had him seeing a speech therapist from about 2 and a half. To be honest, at that age you can do a lot of what they do yourself so don't beat yourself up about that- early intervention can include what you do at home with- you've already recognized a problem, many don't.

My ds is now 5. He's been talking for about 10 months but not clearly or correctly usually (most people only understand some words). He has had speech therapy twice a week for over a year now (still mostly stuff you could do at home).

Mine was diagnosed at 3 and a half with ASD. He has also seen an occupational therapist for an hour a week for a year now. This has helped him so much. (I just mentioned that because he sounds like some loud noises bother him).

[WiltingTulip]

And also, ignoring you when he's watching tv is normal!

[WiltingTulip]

Oh also (sorry for so many posts) hand flapping is a big flag. Don't worry if he gets the diagnosis, it just opens up new doors for support. The OT has been amazing at helping my ds regulate his movements, decrease his tantrums (which are actually caused by him being in a heightened state due to poor sensory regulating - not speech frustration). Now he can talk a bit he can remove himself from things he knows he won't tolerate - he asked to leave a fun activity the other day "before the noise comes" because "I won't like that"

[ohdearme1958]

Mummy, it's ok. I knew why you were upset. And to be honest with you it's also ok to be upset if he is diagnosed.

I knew at birth my son 'had something wrong with him' and I called the paed back to my room two times to have another look at him. There was something I just couldnt quite put my finger on. He was the youngest of 5 and things just didn't feel right. I'd also said to my friend when I was pregnant - there's something not right here. It was in connection with movement.

When he was 8 months old my mum sent me a copy of the Woman's Own (I don't live in the UK) and there was a half page article by a mum who's son had been diagnosed with this then very rare condition called autism. I knew there and then that my son was also autistic. I even told my friend. And by the time my son was 12 months old I could eee people close to us having another wee look at him with a puzzled look on their face. I would say I think DS is autistic and theyd say Artistic?????? And that's quite funny actually because he did go on to become a very talented artist though once he became verbal his desire to draw was lost completely.

My son was diagnosed by the late Lorna Wing when he was about 3 but it was such an obvious case she said she could have diagnosed him in the doorstep of Elliot House as soon as she opened the door to us.

At 25 my son requires round the clock care on a 2-1 basis due to other difficulties, including Tourette's, that have developed along the way. It was put in place by us personally due to there being no services where we live. He still doesn't say much at all but the strangest thing is that he can read more fluently than my other son who's dyslexic. That's not to say however that he understands very much of what he's reading. He makes my heart sing when he has a good day and he's sitting in what he calls his 'office' reading a Thomas book out loud for us all to hear.

My son is everything to all of us. We quite simply love him to the moon.

[BummyMummy77]

Ohdear- you actually be my Mum in some respects. Very very similar stories.

Mummy, it's ok to feel upset. All we want in the world for our kids is the absolute best and when they don't follow down the path we had expected it can take a little time to readjust. Be kind to yourself.

And you sound fantastic, if anyone has the ability to take this for what it is you sound like you can.

I'd also like to say how much fun my brother is. Yes aspects of it are harder but there are other aspects that can be wonderful. And often side breakingly hilarious.

[NickyEds]

Sorry you're going through this op. My ds had one word at 2 years old. We took him to the SALT drop in at 23 months and they told me to return in three months, I did and they then arranged for a therapist to visit ds's pre school, followed by a meeting to discuss what she saw, then we got a one to one appointment with the SALT after which she said to call back in 2 months ish for another appointment which he is going to tomorrow. Ds has always communicated a lot though, lots of pointing, noise making etc and he has good understanding and these things were very much the focus of the early appointments. He has had a bit of a break through over the Summer and has acquired lots of words but his pronunciation is very poor so I'm still a bit worried about dyspraxia.

I would go back to the gp, SALT and hv. Has your ds had his 2-2.5 year check yet? I have been embarrassingly persistent in calling them, following up appointment etc. I thought that we just had a really good hv and SALT team but my friend whose dd is still not talking at 2.9 years has been much more relaxed about it all and hasn't been given any appointments, despite some serious things being flagged up at her 2 year check. The squeakiest wheel gets the grease so to speak- it's crap and I really hate to think if myself as one of those mums but mainly I don't care-I would be devastated if he goes to school behind if there was something I could have done but didn't.

I think it's ok to be upset by a diagnosis too. Your ds is very lucky to have you.

[NickyEds]

Oh and tantrums and Peppa Pig are par for the course with toddlers!

[butterfly990]

I have stumbled across this app for a different purpose. DP had a brain tumour and lost the ability to communicate.

This app promotes itself as being suitable for children. There is a free trial version.
www.assistiveware.com/product/proloquo2go