Support thread for speech and laguage delay toddlers...

[Orangeflower7]

Hi, I have a little boy of 2.5 and we have just today had our first speech and language referral appointment as he is not saying many words yet. I thought maybe other parents might be in the same position and would like to share experiences for support?

It took a few weeks for the appointment, which we were referred to by the health visitor. The therapist told us he has a moderate language delay and has given us ideas of some signs to use with him, she has advised us to keep language clear and simple and we will get a place at a toddler group run by speech and language therapists who will observe and support us. Not sure how long that will take as they only have 6 children in a group but there is an option we can go to the next town if necessary. He also had his hearing tested by the hospital audiologist last week and they said his hearing was fine.

Dudesmummy I've been told by HV that a child aged about 2 should have 50 words, not 200, if that makes you feel a bit better.
DS also gets very upset when people leave and sounds similar to your DS when you talk about his physical skills. MY DS is also 2.3 now.

Hello. I've been lurking for a couple of months, and have just read the first few pages but hopedI may be able to join you. My DD has just turned 2, and had her 1st SALT appt last week. SHe has been very slow to talk, and only uses single words, many of which are difficult for others to understand; they have called it an expressive language delay. Her hearing is ok ( I am deaf on one side so was always a potential worry) and her understanding is good. she manages with her communication through a mixture of words, pointing, facial expressions ( she could give Frankie Howard a run for his money!) and signs.

I am not sure what is happening next; the SALT is going to visit the ursery she goes to, and has put me on the list for a course for parents. I am trying hard to spend more time with her on her own (we have an older DD too) but it's not always possible.

Not sure why I'm posting really, but have gained much reassurance from others' posts!!

Lingle what you say is very interesting, I too am made so fearful by the idea of autism. It is causing me enormous stress and, I think, stopping me from thinking clearly. When you say you would have looked deeper into sensory issues etc, what would you have done differently?

Dudesmummy,

well, for instance, to take our own situation, at 18 months, a child should be able to show you what they want and hopfully also show you things they are interested in. (hence all the stuff about pointing whilst looking back at you to see if you've noticed).

Ds2 couldn't do this at 2. Once he started to show signs of doing it, I should have devoted a very high proportion of my time with him to setting up and practising situations where he worked on these skills of showing and being shown. Because this is a core foundational skill that all the language sits on top of. (Of course, as i worked on vocabulary, I did work on the general communication skills too, but only by chance IYSWIM.)

But I only started thinking in this way at 3 because until then I thought that "only autistic children" had these problems so I didn't learn about them except by accident on mumsnet..

On the sensory side: DS2 was a joyful child in softplay centres, at the park or climbing a hill but terrified of certain loud noises. Also, when he was three, he had a period of looking slant-wise and leaning over a bit when he felt overwhelmed or overstimulated. I should have studied these sensory preferences with calm curiosity and used the information they gave me to alter the times and places when I was working on language with him and maximise the chances of him being in a "calm alert state" when I wanted to work on language. But instead I tried to ignore them because I found them scary.

Moving on to the ASD diagnosis issue itself, I want to say that I have the utmost respect for parents who fight for this diagnosis which many of my friends on the special needs board have done. I also respect (but respectfully disagree with) those who have decided that the way foreward is to expand the diagnosis to a wide range of people, including those we would not think of as having a disability but merely a difference. But it wasn't a route I ever wanted to take and nor did DH - for us, it didn't feel like a key that opened doors, it felt like a dead-end. The ASD label is for me past its sell-by date. The SN community on mumsnet had wonderful people in it at that time with no axe to grind and they pointed me in the direction of Stanley Greenspan - possibly the world's foremost expert on child development. I read his essay on "The Misdiagnosis of ASD" and realised that I didn't have to buy into the concept of ASD in order to understand communication difficulties, their origins in sensory/processing problems, and what to do about them. Finally here was a doctor who understood that insistence on labelling a child may well paralyse the parent in the period when she should be most active, most in charge of the situation. The whole "is it ASD or not" thing then quickly started to lose its power over me. I can link to this article if you think it would be useful for you.

Excellent post lingle. So glad I checked in here to read it. Am taking DC for an evaluation with a paed doc in an hour. She is being assessed as having a primary problem with speech delay but I suspect they may well try and slap a possible ASD diagnosis on her.

I feel calmer for reading your post so thank you.

Could you also link the article lingle? Many thanks.

I so agree with Lingle in everything she says.

I also wasted (in my view) time between ages 2 and 3 because I hoped DS would start requesting using words and didn't like reading the word 'autism' or 'ASD'.

I went on the PECs course just before he was 3 and so wish I'd done it sooner. Even if it is just language delay, PECs and similar strategies cannot possibly (in my view) do any harm. The children who start attaching words then grow out of the need for PECs very quickly.

I wish I'd realised that there was no need to 'accept' autism or any kind of a label by giving him a tool for requesting. Any such acceptance can come much later and only if it is actually needed.

www.icdl.com/distance/webRadio/documents/2-26-2004.pdf

Thanks for that link. I wonder if people press for a diagnosis because it enables their child to get more help? That's if it does give access to more help.
The way I feel is that if I'd been told when DS was born that he had autism, I'm sure I would've been very worried and upset. Now? He is who he is. I know him as he is today. He is not to be defined by a label that probably doesn't fit anyway. He is just speech delayed. That's all.

Lingle you are very inspirational, thank you for that. It is very encouraging to hear someone who is not trying to avoid the problem but is trying to avoid labelling. I already believe that my DS does not fit neatly into any diagnostic category but am well aware that he has issues that need addressing (sensory and language). Your approach and calmness is very reassuring, as is the fact that you say your boys improved so much.

Regarding the PECS, does anyone have any thoughts that versus Makaton, or both? I have not considered either yet but want to ask my speech therapist about both when I see her next week. I was thinking that signing is probbaly more for my DS as he is far more physical rather than being able to concentrate on a picture, and he already uses his own "signs" like putting things in your hands, reaching up to be picked up etc. Any thoughts?

Tabitha - absolutely, it is supposed to bring more help. I'm sure that if DS2's problems hadn't resolved, I'd have eagerly sought it too. There are worse things than labels.

It is infinitely better than being labelled a bad parent
It is infinitely better than your child being labelled "naughty" or "weird"

What it doesn't do is convey any information about the child other than "has problems with communication". And it comes with baggage.

Dudesmummy My Makaton teacher said PECS come after Makaton if you see what I mean. She said PECS are for children who can't do Makaton, at least, not to start with.

Lingle I see what you mean. Someone was saying on another thread that it is very hard to get that extra help and that the providers just want to deny that there are problems all the time, so pushing the requirement for help to an ever older child and to someone else's budget.

Def try makaton, but adding pecs even at the same time just gives them another option - 'total communication'.

Agree again with lingle - diagnosis of ASD or otherwise can be extremely useful, eg in getting support, helping others understand.

It's just not worth getting caught up in the word and all it could possibly mean, especially in the early days. I definitely don't think it's 'slapping a label on' at all.

At our first paed assessment I discussed ASD diagnosis with the Dr as it was mentioned DS was showing some traits (though at this point it isn't clear if it's glue ear or ASD as the traits are related to communication). The Dr felt it was being over diagnosed these days for a number of reasons. Some we talked about were:

1. Schools like diagnosis as children can be statemented more easily and then get extra support via teaching assistants which are not only invaluable for the children with SNs but also for the rest of the class.

1. Parents like statements as you get the school of your choice.

1. Parents like having something solid to explain their childrens behaviour.

The Dr felt it was inappropriate to diagnose before the child was older, but meanwhile the child should get appropriate support (SALT etc..). She also said at some point in the early years all children show signs of ASD, as we are all developing and until we are developed we all have areas of difficulty. Finally, she agreed that is a child is borderline it isn't always helpful to have a diagnosis or label so long as not having one doesn't prevent then getting the support they need.

Personally, unless 100% certain we will try to avoid labels as I don't want DS growing up thinking he has a 'problem'.

Meanwhile, we have to continue doing everything we can to ensure his communication skills keep improving. We now focus not only on the speech element, but also pretend play, social interaction with others, understanding emotions, taking turns and so on. While focussing on speech was great in the first few months I now realise there are lots of other aspects of communication / understanding / empathy that also need developing. It's a long hard slog, and at times when there's little progress really demoralising... But then there are wonderful moments that give you the drive to carry on. The last few weeks DS1 (nearly 3 who has language delay) told DS2 (18 months) 'no throwing food, naughty, time out'. Six words in a row. Our au-pair and I had to try and contain our outburst of giggles at this very serious telling off, but we were both amazed and proud at what we'd achieved through our hours of SALT we do at home. It's taken 9 months to get more than the odd word out of him. I have a diary and on 26 Jan this year he had only 26 words of which about 10 were understandable by others (the rest were his own made up words only we understood). I don't even count words anymore. I hope this story helps keeps those of you feeling a bit downhearted motivated. I'm not saying it's all happy days around here, we've had loads of tears, panics and moments of dispair too, but it does get better and the more you can do now the better it gets.

Hello everyone

I've been following this thread with interest. This is the first time I've posted, but I've long been an avid reader.

Some background - I have 2 little boys, ds1 who recently turned 4, and ds2 who recently turned 2. I'm posting here about ds1, who has global developmental delay. He's been under the care of a paedatrician and various other professionals since the age of about 10 months, when the medical doctor treating him for reflux noted some concerns. He sat up at 10.5 months, crawled at 12.5 months and walked just before 2 years, although it took him a good 6 months to get confident. He had a brain MRI and blood / chromosome tests at 12 months, and more in-depth chromosome tests in the past few months, all of which have come back fine. He is happy and very affectionate little boy who attends private nursery 3 days a week - nursery have been great with him, but do struggle sometimes due to his short attention span and frequent unwillingness to do what he's told!

Basically, he appears to be following a 'normal' path of development, just slower than his peers. So far we have no reason for this, although doctors do continue to monitor his small head circumference. He has made progress in some areas, but still experiences significant difficulties with fine motor skills and speech and language.

My husband attended the Hanen programme for parents a couple of years ago, and we have a couple of the Hanen books, which we try to follow the principles of, but sometimes struggle a little as it's not always easy to be in that mindset 100% of the time. He does see an NHS speech therapist, but his contact with her is not frequent, and I often feel he simply there for review. A lot of the advice we receive from her is based on the Hanen principles as well, so we are often receiving advice we are already aware of, which is nobodies fault.

About 6 months ago he was referred to a specialist communication clinic at my insistence. I had queried whether he could have verbal dyspraxia - this was ruled out, and the conclusion was that he did not have a language disorder, but more of delay in line with his other delays - they estimated the delay to be approximately 1 year. Another discovery was that his understanding was not as good as we thought it was - we always thought his understanding was far better then his expressive language, but apparently not - this has become more obvious to me in the past 6 months now, which I guess is the significant factor in his expressive speech delay.

Anyway, with him due to be starting school next year (we are in Scotland), and with the realisation that his language skills are now on a par with his little brother, I feel that we need to try and help him a little more. I was thinking about possibly trying to contact a private speech therapist, with the hope that perhaps they could visit him at nursery on a more frequent basis. So, I've posted here to say hello and share our story, but to also ask if anyone has any recommendations for good private speech therapists in the Edinburgh area?

Congratulations if you've reached this far :) Many thanks for listening!

Hello again everyone

Well, short verdict is DD has a speech disorder rather than a speech delay. Some sounds are non existent. Some are consistently muddled. Some are randomly and inconsistently muddled.

She suggests weekly one-on-one sessions and lots of jolly phonics sounds with actions to try and help DD do all these sounds and start to use them accurately.

I feel rather down to be honest . I sort of wished she'd said I was over reacting. But hearing DD and her today made me realise how bad her speech is.

Also wish this was available on the NHS here . Even if we waited yet more months (we've been on the waiting list for ages already) DD would only be offered group sessions - all my area do - and the therapist today did say that was very effective for speech delay but not so much for disorders of sounds. I guess she would say that though...

How old is your DD killercat? Can you understand your daughter?

Has anyone else done the Hanen programme - that is , i think, what they have put me down for to help DD's speech delay. Is it known to be effective?

Hi Tabitha, sorry i haven't been on in a while i forgot where the thread was. We went to the child development on 31st Aug and saw occupational therapist speech therapist and gp. OT and ST want to see him again and doc wants to do blood tests to check chromosome 22q and hearing tests, also glue ear tests. So of course i went home to google chromosome 22q, and the many defects that can arise from this chromosome are astounding. Im left now fearing the worst, she mentioned autism but said its too soon to tell. She mentioned his avoidance of eye contact which now i see him do often, but did not notice before. The next time any one will see him is in 6 months. I might have went a bit funny by then i think....

Arrogantcat. DD is three years, 3 months old.

It's so disheartening and fustrating. I totally understand killercat. DD (3 yrs) has the speech of a 2 yr old (and that's an optimistic assessment) and seems a lot of the time to be in a world of her own, although she can be brought out of it easily.
It breaks my heart to see her older sister and other children try to talk to her and she just ignores them.
She starts preschool next week and I am very anxious about how she's going to cope.

Arrogantcat, we have similar pen-names and similar circumstances. My DD starts pre-school next week too and I am worried. She also has an older sister who tries her hardest with her and friend's children the same age who talk over her head...

I am trying to persuade DD to copy simple gestures which the ST suggested. For example, getting her to stick her tongue out back at me and move it from side to side. All this as a precursor to getting her to mimic actual sounds.

What therapy are you doing at the moment?

Babydubs - I just had to post!!

My son is 3.4 and sounds just like your son. Mt daughter is 2.1 and sounds just like your daughter!!

DS is only just beginning to speak (He calls me mummy now, which I really love!) whereas DD talks in sentences and (as you said) often translates DS's speech.

Would love to talk to others about their experiences. We have decided not to send DS to school this year - his speech is not great, he's only JUST out of nappies and, while he wants to be friendly, he does struggle with other kids his age. So he is staying at home. I am already looking at home ed if we need to.

I do feel like an utter failure most of the time. Because DS struggles to communicate, his tantrums / behaviour can be - well - challenging!!

Killercat, yes, similar names and similar situations. My DD was referred for an audiology test aged 2.3 because of our increasing concerns over her lack of speech. She refused to co-operate with a large part of the hearing test and was labelled as "difficult, vacant and observed as having poor eye contact." None of these traits are seen typically in her normal day to day life. I do accet that she can seem in her own world but can easily be brought out of it with the call of her name. She is a happy, engaging, affectionate little girl who in my view, if she could speak no one would be questioning her little quirks.
To answer your question regarding present therapy, DD has been assessed 3 times in total by SALT who simply seem to highlight her problems rather than offer us any techniques/tools to help her.
We have also seen a community paed last week who seemed negative from the word go and appeared intent on trying to scare and worry us into accepting an ASD diagnosis.
Neither myself or my husband believe this to be the case (at this point in time) and are refusing being led down the road to a diagnosis and label for our little girl.
I am hoping that a combination of SALT and preschool will help to bring her on.
Naive perhaps but she's my daughter and I want to give her a fighting chance in mainstream education.
If it's clearly not working out of course we'll reconsider our options.
Killercat, what intervention has your DD had so far?