Support group for parents of children with speech delay

[Mum2prince]

Hi,

I've seen quite a few of these threads but not a recent one. I think if anyones got experience with how their child is now doing or what they are currently doing to help them. That would be incredibly helpful to me and others.

All stories and advice welcome. Ds1 is 3 and has improved greatly, can get his point across and even has some 2-3 word sentences. Amazing considering he couldn't say anything this time last year.

But he now stuggles answering questions, even though he might know the answer for e.g
Me: "ds1 what you doing?"
Ds1:"Bouncy ball blue"
Me: "oh you're playing with your ball, what colour is it?"
Ds1: either runs off to play, says ball, or something else.

So far he only responds to "what are you doing?" Only if he has the words to articulate , one time he said "jumping on the bed" whilst he was doing so. He can also answer "which one do you want?" But that's about it. He not conversational although he tries, showing me things he sees plane in sky etc and I coment and thats it really.

He saw a pead when he was younger, (20months old) wanted a follow-up, but his case wasn't "urgent" so she said it would take a year or so, then came covid. I stopped taking him to nursery and his private SLT. Now we have moved abroad i hope to get him seen here and hopefully find a school here that will give him the extra support he needs.

Sorry just wantdd to give an insight on my situation. Right now I just want to help him get to the next stage, as speaking was my biggest worry but im now seeing theres alot more to it than I thought.

Bump

Anyone

This is a great idea for a thread and I hope it keeps running!

DS finally has a SALT appointment next week, only over the phone but we’ve been waiting since last year.
He did say five words when he was younger but then regressed and the words completely went. DS is now 2 years 8 months and up until about two weeks ago had no words. He now counts 1-10 and recognizes those numbers. He’s got a couple more words but not much.
Autism and global delay has been mentioned a few times to us due to the regression so we are waiting for a pediatrician appointment but I don’t think that will happen this year now. Also waiting for a hearing test too.
I’m doing everything I can with him, different groups, spoken to a couple of SALT already, been reading two books (it takes two to talk and more than words).

I’ve heard a lot of ‘because of covid everything has been put on hold’ when I call to chase up appointments.

Thanks for starting the thread, being the parent of a speech delayed child can sometimes be overwhelming.

My dd has just turned four and entered reception year today. She can speak but her processing is still so muddled that she mostly ignores if she doesn't understand or doesn't like the question. I'm hoping as her understanding improves so too will her conversation and social skills. Asd has been mentioned too.

I so long to have a conversation with her to find out what's going on in her head. I hope I don't have to wait too long.

Mumsnet has been a god send. And threads such as this give me opportunities to talk to people that understand, instead of my friends with nt children.

It’s so hard isn’t it @gemsynermal? I was at the playground last week and there was a mother talking to her daughter, having a conversation, turns out her daughter was younger than my boy and it made me feel so sad that my boy won’t communicate with me. When I talk to family, they reply ‘he’s just being lazy, he’ll talk soon’ or ‘he’s being a typical boy’ I know they probably don’t know how to reply to me which is why the replies are along those lines, they’re trying to reassure me.
Are you on any waiting lists at all? Has she had a SALT?

PinkDaydreams she had speech therapy but it was pretty useless. She knew lots of nouns and so passed all of their tests. She was signed off by them last year. It didn't help at all with conversational language, and I found a lot of the strategies I implemented naturally as a parent.

One thing that did resonate with me was reading the Einstein syndrome (I can't remember the name of the author). On both sides of the family there's a history of speech delays and many relatives in highly analytical careers (engineers in particular), and my daughter did fit the profile.

How old is your boy?

My boy is 2 years 8 months. That’s what I’m worried about with next weeks appointment, that I’m doing everything already and he/she won’t be able to recommend much more. I’ve had a few different strategies recommended from ‘professionals’ but I’m already doing them.
I’ll have to look up the Einstein theory, sounds very interesting.
You say your little girl has been signed off, is that it for now then, no more help? I’m sorry if I sound blunt, i don’t mean to come across that way. It frustrates me that we have to fight and fight for help, it’s hard. From when my little one was born I knew something wasn’t quite right, and after so many doctors telling me that he was fine and that I was over reacting, I eventually proved them all right, he had cows milk allergy and severe reflux. It was so hard getting the gp’s to listen to me and I feel like I’m back in that boat now.

The speech therapist signed her off saying her speech and language were age appropriate, and there wasn't anything else that could be done for her. She is now under observation of a paediatrician and on a 60 week waiting list for an asd assessment. I have become rather disillusioned with the professional services that are supposed to help her (for me, speech therapy felt like the professionals assumed our children didn't speak because we were lazy - we spent one session reading a book to our children!), I've had one GP tell me the issue was with the school and they were putting too much pressure on her and as for CAmhs - a 60 week wait!

Like you I was worried she would be signed off by speech therapy without helping the underlying issues, but I just don't really know how they would help her at this point.

By far the best source of support has been via her preschool, who noticed an issue and arranged agencies to get involved and one to one support. She started reception today and have already arranged for a agency Sen teacher to come in and create a very small support group for those children that need extra support. They are also pushing for an EHCP.

Is your little boy going to nursery?

Our second son was referred to SLT at the age of 3 as he had virtually no language or understanding. He was diagnosed with a "severe and complex language disorder" at the age of 4 for both expressive and receptive language.

DS2 could barely string a sentence together and a lot of what he said was complete gobbledygook with the occasional recognisable word. I remember once hearing a much younger child say to his mum, "What are they doing?"and it struck me then that DS2 had never asked a question in his life.

We struggled to understand what he was trying to tell us. Frequently he cried himself to sleep because he couldn't get through to us. And we struggled trying to get him to understand us. He would just say "Yes," to everything, even when I said something like, "Don't do that again."

The despair I felt at not being able to get through to him was indescribable. It was as though there was an invisible brick wall between us and I just felt completely useless.

DS2'S receptive language was so poor he didn't get excited about Christmas because he had no understanding of what Christmas was, so on Christmas Eve he just went to sleep as normal. How do you explain about Father Christmas and presents to a 4 year old child without any understanding?

We also had a lot of behaviour problems as a result of his frustrations at not being able to communicate. Some of his behaviour was so bizarre, we were convinced he was autistic. At that point I couldn't see how he could ever go to a mainstream school.

The key to everything was the intensive support and intervention that was put in early. He had a Statement of Special Educational Needs (now called an EHCP) while he was still at nursery school, which provided for at least 15 hours 1:1 support and this was transferred to infant school.

He had intensive speech and language therapy with a specialist therapist from the Specific Language Impairment Team for several months. The Speech and Language Therapist went into school to work with him directly, and gave the TA tasks to carry out each week. DS2 loved learning and responded well to all the support he was given.

By the time he was 6, DS2's language (both receptive and spoken) was age appropriate, he was doing better than most of the other children in his class, and his Statement ended.

The following Christmas when he was 7, the little boy who had once been so isolated and unable to communicate, was given the part of Joseph in the Y2 Nativity play, a major speaking part. It was a measure of how far he had come.

DS2 is now 26 and a graduate from Manchester University.

A poster called Checklist posted a list of SLT activities on this thread that might be useful

www.mumsnet.com/Talk/special_needs/3106921-Receptive-language-delay?msgid=73911297#73911297

@PinkDaydreams your ds is at the age where I got really worried as he was nearing 3 and growing taller and bigger by the day! His first spontaneous word was at 2.10 and it was sweet (his multivitamin), and i quickly realised he would ask for this when he was hungry bless him as he didn't know how to ask for anything else.

That was also around the time i got him aba therapy, best thing I could have ever done as it just goes deeper than SLT. In the 2 months before he turned 3, learnt to request what he wanted spontaneously and also label almost anything. I can talk you through the technique if you like very easy and effective.

Now at 3.5 hes a great kid but he's still not quite there yet which is sad really. We took him out last night and he was shattered and it was past his bedtime, but dh thought it was fine to take him to a little arcade i

arcade in the mall, and ds1 got very distressed said "no thank-you " and ran the other way! It's his favourite place in the world. I went dont to eye level to try and ask whats wrong and he got very tearful as he probably thought I was telling him he had to Go, I didnt know. But it made me upset that I couldn't ask whats wrong, so I said okay let's go home.

@gemsynermal interesting what you say about Einstein syndrome, as my ds certainly fits the category. Late talkers on both sides of the family (my younger sister who is now 12 spoke at 4 and she's completely fine now) and dh and my father are engineers, father in law is and architect. And I do see that problem solving , number and pattern recognition in my ds despite lack of language so there might be a link there.

But i haven't actually read the book, just some blogs online and though some of it rang true there was no advice in how to help ds so I stopped reading about it.

I understand your frustrations and I've stopped even wanting to go to appointments (I know I have too) but everything my ds has benefitted from ive had to fund and fine and do research myself!! And i always have this thought at the back of my mind that I'm no professional, as hard as I try i won't be giving ds what he needs! I really wish someone could point me in the right direction. Hope the health care system is better here, coz the NHS were appalling.

@Ellie56 your story is what I made this thread for, so THANKYOU! what a journey you and your ds have been through. Well done!! Also I will check out the thread you have posted aswell.

Oh and what u guys say about already using these strategies, I relate so much!!!
Ughhh, I would go to a useless group speech therapy and the handouts and advice given to me i find so basic that I've been doing it subconsciously already. New ideas are always welcome but when us mums worry so much we often try to be proactive and we have tried most things I've found . Aba was different though, I just wish it was more affordable and available to all who needed it.

@gemsynermal a 60 week wait?! That’s ridiculous! With the SALT we were going to pay to go private but we’re told not to as the nhs don’t recognize it which is frustrating as it would have opened up our appointments for someone else.
I take him to the local children’s centre and he will be starting nursery there next year. They have been fantastic, they’re the ones who have been putting in the referrals. He’s completed a couple of early communication courses there too but unfortunately no change to his speech.

Apologies to other posters, I’ll read through them and reply when I can, little one has woken up and it’s breakfast time! :)

@Mum2prince I’ve read so many mixed reviews on ABA and have been torn whether to give it a try.

@Ellie56 thank you so much for your experience, you’ve put in the hard work and it’s really paid off.

Oh @gemsynermal you saying about how one of your sessions was reading a book has reminded me of something.....at the early communication class the teacher recommended reading books and one of the mums was really surprised. I got into a conversation with her about reading and offered to lend her some books as she didn’t have any children’s books and had never read to her son. She turned down my offer of borrowing books. It really shocked me that she’d never read to her son, she had two other children too. I know I sound like a snob, I’m really not, I just enjoy reading with my boy and I remember from a very young age my mum reading with me.

A poster has mentioned Christmas, my son really has no understanding and I don’t see much changing (he will be nearly 3). His general understanding is very minimal, he only understands a couple of things, for example coat on/let’s go/brush teeth.
My son is now getting extremely frustrated that he can’t communicate with me and me understand him. I feel awful that sometimes I can’t seem to help him.

I too thought that once we started getting help from ‘professionals’ that a magic wand would be waved and all would be well. Well that certainly hasn’t happened! I’ve had to do so much chasing up. One of the HV said she’d referred him for a hearing test, six weeks later I called for an update to make sure he was on the list and was told that the HV hadn’t done it

@Mum2prince completely agree with you regarding us being proactive and looking into techniques ourselves, when I’m asked what I’ve been doing the ‘professionals’ come across as shocked that I’m actually doing things already that they would normally suggest. That’s why im feeling a little bleurgh about this appointment next week and not very hopeful, I need to snap out of the negativity though!!

It’s good to hear some positive stories DS is over 3 and a half and has minimal speech he says words once and that’s it for weeks, similar to above we might get the occasional statement of up / down go bed, go out. It’s heartbreaking to hear younger ones chatting away.

Hi, I've just found our thread, I wondered if anyone wanted to post updates? It would be great to hear how your little ones are getting on.

My DS is 28 months and struggling with his speech. It seems so inconsistent, sometimes he's volunteering words in context and then those words disappear again and don't resurface for weeks. He gets so frustrated too.
I'm also finding it hard as I have an elder DS who is soooo chatty and he just wants to fill every silence. Has anyone got any good tips for managing this dynamic with siblings?
We've been referred for speech therapy but 9 month waiting list where I am! Have bought Hanen it takes two to talk but would love to hear any other recommendations or tips.

Hi folks, I’ve been reading the thread and I can understand how tough this is. So much of the answer is ‘patience and persistence’, and I find it so frustrating. Our 22 month old boy was born with a floppy larynx which we were advised to operate on. He had the op and it all went well, only for us to discover much later that he has hypotonia. He’s still en route to getting diagnosis and the correct support but it took so much chasing due to covid. He only babbles if he’s playing and even then it’s very sparse, he doesn’t say any words. He understands when I say milk because he lays back (he’s always drank his milk lying down - which they said is strange but his swallow is good). We finally saw a SALT/SLT and we are trying to model keywords to him but he doesn’t seem too fussed with language. Anyone else in this position? He has an MRI on the 20th of Sept.