Feeling low and wondering if there is any hope

(9 Posts)
auntynan Tue 19-May-15 20:27:04

Hi

My almost 27 month old has absolutely no words. I have been told by a private speech therapist that he has a speech and language disorder (not delay) also I thought he was doing well with his receptive language but she reckons he isn't understanding much so I just feel hopeless. He definitely understands a lot of phrases we say but you can't really say just anything to him and he doesn't follow two step instructions.

He does go 'mmm hmm' if you ask him if he wants something or he will walk up to you with a book and go 'mmm hmm' to let you know he wants you to read it to him but that us the only sound he will make deliberately. He babbles lots and has varied sounds with vowels and consonants but nothing with real intent.

He has been seen by the dev paed since he was 14 months because he was late to crawl/walk and has low muscle tone. He struggles with fine motor skills but is getting there. His eye contact is great and he is very social, very interested in people. Up until now he hasn't mimicked much or had much in the way of non verbal gesturing. However these last two days he has started clapping his hands when I ask him to and he even started what we think is dancing yesterday. He loves books. He does have some self stimulatory behaviours such as spinning wheels and rocking against a wall. He also rotates his arm a lot whilst staring into space.

He gets an EEG tomorrow. The paed is reluctant to diagnose ASD or anything at the moment.

He sleeps through the night touch wood and doesn't get upset easily. However recently I can feel him getting frustrated when I don't understand automatically what he wants. He eats most things he is given.

He struggles with self feeding with a spoon and won't drink out of a sippy cup.

If you say to him 'where is Grandad?' He will look right at Grandad and such is the case with other words he recognises.

I just want to know if anyone was in the same boat and their dc did go on to acquire speech. It's the lack of speech I am struggling most with.

I guess I just want some hope, I'm so scared and appalled at the lack of support.

Sorry I can't breathe for crying right now. Sorry to sound negative - I just feel utterly alone and lost and sick to my stomach with fear.

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OP’s posts: |
cansu Tue 19-May-15 20:44:41

I am so sorry you feel awful. I remember the time around diagnosis being bloody awful. I have two dc with autism. They both have problems with speech. ds who is more classically autistic has no speech, but now uses a communication device to help him communicate a little. dd took along time but eventually started using single words and some verbs around age 4, after we did some ABA with her. A good starting point would be to look at using some PECS (picture communciation system) with your ds so that he can express what he wants. This will also perhaps help with his speech. If you google PECS the company do training courses for parents that are quite good at explaining how you get started. I would also push for SALT to get this started with him. Does your ds go to nursery? If so I would write asking for a statutory assessment of his needs. This will help you to start getting some input for him. I remember support being shit at this age too. You need to start getting professionals to put their concerns about your ds in writing so you are gathering evidence of his needs. I also get upset, but try to then get pissed off and push the experts to help your son.

Shootingstar2289 Tue 19-May-15 20:58:40

I know how you feel. My son had his two year check and the health visitor referred him to a speech therapist as he didn't have any words. It took 6 months after the referral to see a speech therapist! He then seen a paedatrician who told me he just had a general speech delay and would catch up. How wrong was she...

My son is now 4.. He only started saying words at 3 and a half and now he is awaiting an autism diagnosis. So please don't let them shrug you off.

However, your sounds like he is doing great in some ways - the eye contact and wanting to play with others. My son struggled with eye contact and was happy to play alongside others but not with them and often struggled to share Etc. And the fact, he eats well is fab! My son is extremely sensitive to new foods and won't try a lot.

My son was slightly late to crawl and walk but still within the normal range I think.. He took his first steps at 16 months and took a while to be confident enough to walk more.

my son has great fine motor skills but struggles with gross motor skills.

He also stares into space a lot.

From one Mum to another. You will be fine. I've often been in tears worrying about my son but it gets better. My son didn't say a word until 3 and a half and now says hundreds of single words and has started making sentences. Your son is still very Young and he may just catch up.

Have you seen a speech therapist on the NHS? As my son has a speech therapist he sees once a month or so at pre school who got the ball rolling for my son to see a Senco, paedatrician, an Autism Worker, An educational psychologist etc to help him in the best possible way!

An autism diagnosis can take a long time and a paedatrician won't just make a diagnosis. It will be months and years of observations with professionals listed above and meetings etc.

I really do wish you the best of luck in the future smile

2boysnamedR Tue 19-May-15 23:00:02

My 38 month ds has no words. His older brother has a severe language disorder. I kid you not that people don't realise he has a lang disorder. I'm not downplaying anything as I have fought over three years to get him a statement. It's been torture.

But, I never thought he would talk. Ok so he has a disorder for life, but he can make his needs and feelings know ( mostly!) he goes to mainstream.

I don't know if my non verbal boy will ever talk. It's truely upsetting. I know how you feel.

What has helped us as a family is portage, early years, reading and learning for myself. Getting private SLT ( not cheap but a £150 report has litterly turned my olders boys life around). Paying a private SLT to teach pecs.

Things can improve, even if "might" never 100% get "normal" you can always help them improve.

senvet Wed 20-May-15 22:46:54

My friends ds had no words until Christmas Day when he was 4. He said "cranberry and mustard" just after his mum had asked for it.

She won't forget that Christmas.

Your dc's communication is coming along, so keep up the good work, and certainly give the usual Makaton/PECS/objects of reference etc some thought with your SALT.

ouryve Wed 20-May-15 23:34:51

He has receptive language, which is good. Even if he doesn't master spoken words, he understands enough to learn other ways to communicate.

We never thought 9yo DS2 would speak. He cottoned onto it at the start of this year and, while it's only single words and short phrases, he never shuts up, now.

His thing this week is what appear to be rude verses to The Wheels on the Bus. blush I suspect some older boy mischief at work with that one.

DimpleHands Thu 21-May-15 21:19:21

Just want to say I know exactly how I feel.

Two things that might give you some comfort:

1. My son's ABA consultant said that toddlers who babble generally go on to talk. It is the toddlers who are completely silent (or just making "stimming" noises) that often end up being non-verbal.

2. There is a study where they took 4 year old pre-schoolers who were non-verbal (or who had very few words) and then assessed them at 8. 56% went on to talk fluently, 19% had phrase speech and the remainder were non-verbal. So even if your DS isn't speaking at 4, the chances are in you favour that he will go on to speak fluently.

This time last year I was at the same point you were and I cried every day for months. Now - even though DS has now been diagnosed with definite ASD - I am happy again. (And so is he - he's a very happy little boy, which I think is the main thing.) You'll be OK smile.

AgnesDiPesto Fri 22-May-15 10:29:32

My ds lost most of his speech at around 27 months. The key for us was motivating him to use words again, he just wasn't bothered to talk. We started aba at 30 months. He's now 8 has asd diagnosis. He can talk in phrases but not hold conversations, but he can answer questions. He can read and write, actually he finds this easier than talking I think because he has more time to process and plan what to put. Using rewards and putting things he really wanted out of reach so he had to get us to get them helped. He's needed intensive help but it's worked. Still a long way to go but he's doing well and I am confident if he keeps getting the right help he will keep progressing. He's only just started speaking to his brothers and grandparents before that he just spoke to us and his 1:1 staff. Caldwell give grants for aba also look at aba4all Facebook for other charities. You have to go out and find / fight for support. My ds wouldn't have made progress if we had stuck with what statutory services were offering. A pecs course is a good place to start not just for using pecs but understanding about aba and motivation. Pyramid do them round the country and very worthwhile. They used to have some bursary funding avail but don't know if still do. But yes there is hope smile

MissTriggs Fri 22-May-15 19:30:38

"If you say to him 'where is Grandad?' He will look right at Grandad and such is the case with other words he recognises."
Good. Do you know what to work on next understanding-wise?

I just want to know if anyone was in the same boat and their dc did go on to acquire speech. It's the lack of speech I am struggling most with.
Yes.

I guess I just want some hope, I'm so scared and appalled at the lack of support.
My lad is no longer on the SEN register.

Sorry I can't breathe for crying right now. Sorry to sound negative - I just feel utterly alone and lost and sick to my stomach with fear.
You have come to a place where people get this. You are far from alone, we've been through similar.

Keep posting, let me know if you want practical suggestions on receptive language.

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