Developmental language disorder/ specific language impairment. Would like to hear experiences and advise.

[Lucecita]

Hi There,

I have a 2yr old DD. We took her to SALT services and they have told us that it looks like she has a developmental language disorder and not just a delay, like everyone was telling me. I have been worried sick since April but everyone told me I was being crazy. I wish I was...However my partner is a bit In denial and downplaying everything, thinking that with a bit of therapy she will catch up. The issue is that no one knows because she is really young, but most children with these profiles need years of therapy and support. On the bright side, we have spotted it at a critical age and early intervention is key for more optimal outcomes, so I’m really glad I did not take the “wait and see” approach.

We are starting therapy next week privately because the NHS in Camden has a waiting list of 4 months. The therapy in tailored for her but is based on PRT, which is usually used with children with ASD or significant communication/language delays. She is socially motivated and very engaged with everyone, but needs help to start using language to communicate. We will then combine it with the SALT sessions that we’ll get via NHS.

I would be really grateful if you could share your experiences with me and if there is any hope for me to think she’ll manage to overcome her challenges and be mainstreamed without support or little support by the time she reaches primary school.

Thanks!

Blue Sky are great. We only managed to use their services for 4 months (two sessions a week) but the difference they have made in that time I think is very positive. On the 1st April my son had little language, had never called me mummy etc.... by the end of July there were massive changes. He's still nowhere near where he should be and is what on the waiting list for an autism assessment but he's come on leaps and bounds since we started PRT (even though we don't go to the sessions anymore it's still quite easy to use PRT in daily life.

Have you spoken to Blue Sky about carrying on with SALT? In our area, the way the NHS SALT works slightly contradicts the BS way of doing things.

hilbil21 Thanks for replying! I did discuss PRT with our SALT, who is anti ABA, and after looking into it, she told us to go ahead, that they would liaise with them for their SALT sessions, in 4 months time... She said that their SALT sessions are also play based and that it sounded good.
We just had our first session this afternoon and couldn’t be happier. The feeling of knowing that you are doing something to help your child is priceless. DD did great and was very engaged the entire hour. Therapist was surprised that our first session took the entire hour! Apparently most kids get tired After the first half hour on the first session. I had a great time too and we even managed to reach a couple of objectives that were set for the first 4 Weeks!
What amazed me is how she responded to the therapist throughout the session. Still a bit too active and jumps from toy to toy but they were great with getting her attention back! I hope I manage to do the same soon. We still have lots of work ahead of us and we have to see how she takes on therapy and understand if it really is a language issue or there is something more. In any case I feel we are going in the right direction!

hilbil21 It’s really great to hear your DS did great with PRT. How did you find SLT? I’ve heard so many mixed views...

Sounds like you had a great first session! I read you have spoken to SALT about doing PRT, but have you spoken to Blue Sky about how much you are taking on board from SALT. The reason I ask (which may make more sense than my just asking the question) is because our SALT wanted my DS to start using PECS which goes against PRT (as it gives the child a method of communicating which isn't speech) had I not happened to tell BS that, I would have taken on whatever help SALT were giving

Our SLT is a lovely woman, but because my DS has been coming on so much since she first started seeing him (around the time we started Blue Sky) she hasn't really done too much actual "therapy" with him at all

Sorry I understood the other way round. When the time comes we will discuss it. Today actually I told them about getting DD to say “more” and “again” and they explained why they don’t use them!
How were the first sessions of your DS with BS? We are starting with 1h sessions 3 times per week and we’ll see how it goes!

First sessions sound similar to yours. He engaged with them straight away and I honestly feel they just unlocked something in his brain. It's too much of a coincidence that since the day of his 1st session he's changed massively compared to before it. He's gone from saying nothing to (as an example) saying "I want you to play with me please mummy" when he wants me to join in with whatever he's up to lol

May I ask you why your DS is on the waiting list for assessment? My DD has, as indicated by the SALT lots of strengths Such as social referencing and joint attention, but her play is a bit too self directed and her language atypical, that’s she suggested language disorder. It’s so hard not knowing...

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.

Half the time 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. And 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.

DS2'S receptive language too was extremely 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 child without language or understanding?

And we 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 EHCP) while he was still at nursery school, which provided for at least 15 hours 1:1 support and this transferred to infant school. He had intensive speech and language therapy with a specialist therapist 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 was eager to learn and responded well to all the support he was given.

By the time he was 6, DS2's language 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 24. Last year he graduated from Manchester University, and is now working in the NHS.

Ellie56, Thanks for sharing your son’s story. I can’t imagine how difficult must have been to go through that with him. But seeing his progress must have been incredibly amazing!
I have been reading a lot lately and EI is key. They issue is to find what works with each different kid!

I have a wee boy with disordered sound system. Luckily it was caught early too and he had intensive speech therapy and then was in special programme his preschool year for kids who have severe speech and language issues.

Thanks to the intervention his speech is correct for his age. He has been diagnosed with asd (hfa and very sociable ) and dyslexia since. So now we are working on reading and writing.

If it hadn't been for his amazing salt, he wouldn't be where he is now

Allthewaves thanks for replying and sharing your story with me! Happy to hear your DS has benefited from EI!

@hilbil21 I've been recommended Bluesky but we're all the way down in South Devon. Are there any websites you'd suggest for doing it at home ? I can't seem to find anything online and am desperate to try something new with my non verbal 3.5 yo - thanks x

I think it may have been me they recommended bluesky to you on Facebook lol. There's not really.... but if you search for them on Facebook I know they are starting an online thing, I don't know what it entails though. You will probably see more on the page

@Lucecita I will reply to you later as to why he's on waiting list for assessment 👍🏻

Hi Coco2891, did you check the provider I suggested in your area on the other post? You could contact Bluesky and tell them your situation. They might provide distant services for families?

Hi @Lucecita thank you so much for replying I'd only looked into bluesky and forgotten about the other link. Will call them today x

Much respect to you for getting your DD the help she needs so early. My DD was born into a bilingual household and unfortunately this was a massive problem with getting help. Time and time again we were told she just needs time as she speaks both languages. However, she only spoke English and none of her mother tongue. Her English was very slow and grammatically incorrect. Most years her new teacher would ask us how long she’d been in the country. She is currently 10 and just started year 6. Feb this year we took her to my home country to get assessments done and prove she isn’t going to learn without support. We took this to School here but was not taken seriously and I started EHCP process. After tribunals and fights, legal threats to the school we are in the draft process of getting one.

At the age of 2 our DD wasn’t speaking, during the investigation by the SALT team they discovered that DDs nursery tried to get her placed in a Lang unit but she wasn’t given the space. She was also given a block of SALT in reception which we knew nothing about.
Over the years we tried to help her a lot, most of her issues are with maths and confidence. She was tested in the 99th percentile for IQ which explains how she’s been able to manage so well. I knew she would need something concrete in place for secondary school though.

We got her involved in drama very early on and she had 2 years of drama therapy. Also did lots of comprehension work with her and reading. Story blocks are great and she has started maths tuition for dyscalculia. This summer she went to 2 summer camps on her own. She came back a different child. She was scoring on the 0.2 percentile in the CELF in June and is now in the 40th. I think the biggest thing for these children is crazy amounts of patience and confidence building.
Often their working memory is very poor and just as an eg yest I was explaining to my DD what time her school starts and finishes and 10 mins later she’d forgotten. It makes you want to scream but you can see on her face she really is trying.
I’ve realised it’s so easy to do things for them and to help them, but this can be very detrimental to their confidence. When DD found out she has DLD and dyscalculia she started practising maths and vocabulary on YouTube, having a diagnosis made her feel less stupid.
Another thing is she has also always had a great group of friends, her swimming team, our religious community and her school friends. There’s been spouts of bullying but we did confidence building role plays with her and she actually stood up for herself.

I think count the victories with her and be prepared that it’s draining, but extremely rewarding.

I just realised you said you are NHS Camden, we are Haringey so under Whittington. Camden has a great language unit in Torriano School. I would push for a place there come reception as a lot of children that end up in Lang units only stay for a couple of years and make immense progress. They are very difficult to get though. I found a lot of DDs issues were confidence because she saw herself as so different to her peers and she was ‘stupid’. I think the Lang units really make sure the kids confidence doesn’t suffer whilst getting them the help they need.

@malmontar Thanks a lot for sharing your story. It’s really helpful and I think your DD is amazing!
Mine is being raised trilingual has started saying more words and knows some body parts. She is saying names of other children in the nursery and has said a couple of sentences like “more please” when she wanted to repeat her snack!...you are totally right, what they need is support, patience and building their confidence!
I will try to help her as much as I can for her to thrive and be happy. Because after all, I just want her to be happy! And she is...

Good to hear about Torriano, I’ll keep it in mind if we need to push for a language unit when she reaches school age.

Again thanks for sharing!

If the salt team tell you to stop speaking in the two other Lang please don’t listen to them. I know so many families that did and it doesn’t help one bit. We recently saw a really nice SLT who deals with bilingual children and studied DLD she told us: children with DLD will learn the second language at the same rate as any other child with DLD. So if your DD does have DLD she will end up speaking three languages to the standard expected for a child with DLD. There are some languages easier than others, English being one so she may prefer that, but please don’t give up. There was a very interesting study done on children in Canada where French and English are spoken. French Canadian children who had DLD were actively encouraged to get help in both languges and performed equally in them, however, those who were from English Turkish backgrounds had really bad levels of Turkish compared to their English. It all comes down to social acceptance of said language and some salt services are better educated than others about this.

Our DD now attends a Saturday school for her Home language and is doing really well. She will never speak at the same rate as the other kids there but she can speak it- which is much more than the average monolingual person.

My biggest piece of advice would just be to not compare, and try to keep calm. It is easier said than done. It was really difficult when other kids in our community were speaking our lang but she wasn’t, or when others found school a breeze. This is the first time she’s started school where I feel so much more at ease about her future. DLD and speech and Lang kids in general tend to develop much slower, but it does happen. And she sounds like she has an amazing caring Home.

@malmontar thanks a lot for your words of hope! They help a lot in this moment. I DD that is slowly progressing and having experiences like yours and other mums in mind make me feel that she will reach her potential and thrive!

My dd has a very rare syndrome which affects central processing she was almost completely non verbal until she was 5 and used makaton until she was able to communicate verbally. As it is she still doesn't understand a lot of what we say to her but she is managing. She now knows that people (even myself) don't understand her which at time can be frustrating but she knows that her brain works differently and is reasonably content to but any confusion down to that. Are you using makaton? It so easy to learn as most signs are relatively instinctive. You use it along side speech it's a good stop gap to avoid any frustration.

@MumUnderTheMoon thanks for replying. We are in our third week of therapy and we are already seeing improvements. She’s almost around 50 words, requesting with words when she wants things like milk, cookies, juice etc... has also started to point at things and naming them to show them to us like buses, bird, dog etc... still not doing it super consistently but slowly getting there! She is repeating much more and is interacting more too. She is a bit confused with some things but I think she is developing now what should have done 6 months ago! She has been transitioned to the preschool room at her nursery and they told me she is going great. Sitting for circle time, participating, listening to book reading and playing with other children. At home though she is more avoidant and gets annoyed when things don’t go her way. I can’t pusj her much as I have never done and she is not used to it from us. I was the same when I was little, you could never push me to do things, I would do them when I felt I wanted to! As you all have said, patience, encouragement and love is what we need to do as parents.