# Children with Speech delay using their own language.



## Tegans Mama

My LO has a significant speech delay. Maybe 6 months. We don't know for sure just yet. 

However - she does have words for things that are all her own. She consistently uses the same word - i.e "stannog" for sit down, "teeps" for teeth things like that. The word she uses for sit down, people would not understand if we don't tell them what she means. What do I do about this? She is going to nursery in September. Hopefully she'll have a teaching assistant (she won't be going if she doesn't as it is too high risk) but shall I write a "list" of things she says and what they mean? :wacko: 
Also, at home if your child is the same, do you use their language or yours?


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## Mummy2Boo

My son had a severe speech delay of 18+ months. He also used made-up words for things (kaneer for drink is a perfect example!) and when he started nursery we explained this to them. He refused to speak at all there for a good couple of months and would grunt, mumble and point to get his needs across. After 18 months of speech therapy, extreme hard words at home and workinng closely with nursery and the SENCo, my son's speech is amazing! He has a vocabulary of around 400 words, can string together sentences and is understood by over 70% of people we meet. 

I think it's quite typical for all kids who can't say a word to make their own version so of course most pre-school care facilities will understand this and try to ensure all staff take the time to listen to the child and understand what they need. We have always said the proper word for things to him and don't ever baby-talk or use his words for things. I was told it's important to do this as it helps them learn the real word.


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## Eoz

My daughter clicks but will try to say some words.we use pictures to help her and we also use makaton sign language.

If i were you i would do all I can to make my childs life easy so I'd do a list and maybe arrange to meet the T/A to discuss how your child communicates.you may find being at school will help her x


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## Tegans Mama

I do think being around other children a lot will help her. When we are not around other children her speech seems really good. When she is with other children her age it is obvious just how far behind she really is. Speech delay is normal for children with her disabilities, the fact she can speak at all is a real blessing. 

We will definitely be meeting the TA. We've been to the nursery again and will probably make 2-3 more trips before she starts in September. My close family understand her. OH's family do to an extent but we see my family more (daily) so they are around her more often. If I ask her to say a new word she will often repeat it, can name some animals etc but she doesn't make real sentences (not ones that make sense anyway.. Earlier she told me she was bitten by a squirrel :lol: )


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## Eoz

awww sounds like shes doing well.i hope her and the TA gain a good relationship.it'll make it loads easier x


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## Midnight_Fairy

Matthew used to have alot of these words. I dont think he uses them much now at all? I used to tell the staff what he would say and they got used to it after a while xx


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## Newt

yeah our lo has a sever speach delay, and uses his own language, sometimes he copies what we say getting it right half the time. We dont pressurise him or correct him we let him carry on, we are just happy for the interactionfrom him :D


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## Tegans Mama

Newt said:


> yeah our lo has a sever speach delay, and uses his own language, sometimes he copies what we say getting it right half the time. We dont pressurise him or correct him we let him carry on, we are just happy for the interactionfrom him :D

That is how we feel too. Statistically speaking, Tegan should not be able to speak at all so I feel she's doing really well as she is! We've been asked twice now if we want her to see a speech therapist. She already has over 12 medical professions with whom we have appointments anything from once to 4 times a month. At the moment I feel there is enough going on, and she can communicate what she wants.


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## Newt

I know, and it feels like the most amazing progress when they say a word we havent heard before out of the blue doesnt it? Oscar is starting speach and language next week, all the appointments are getting so difficult to fit in though :dohh: I dont know how much this will help, we'll just have to wait and see


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## Weeplin

Jason has speech delay. He doesn't say a single word yet (27 months), just grunts or sort of makes noises through his nose. He sort of hums what he means. He has specific hum/nose sounds for things like hello.


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## Emmea12uk

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## roxie78

My son is almost 28 months and is currently on the waiting list for speech therapy. How long did you all have to wait? We've been waiting about 1 month so far. He can say loads of words but has yet to link 2 words together. The only word he has made up is the one for mommy. If you ask him who mommy is in a photo he will point to me but he only ever calls me 'ree ree' ?????


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## Emmea12uk

I waited only 6 weeks for speech and feeding therapy.


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## Tegans Mama

Emmea12uk said:


> I waited only 6 weeks for speech and feeding therapy.

You are lucky! Waiting lists in our area are average about 10 weeks, depending who you are seeing. We have yet to get a referral to a feeding clinic even though there are only about 4 foods Tegan will eat.


Tegan has been referred to an orthoptist for her squint, speech and language therapy for her speech delay, and an audiologist to have her hearing tested. She is also being assessed for autism.


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## Emmea12uk

Why are they testing for autism? Isn't she too young for a test? I though hydro can manifest similarly to autism?


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## Tegans Mama

She's not too young to "test" for autism. The symptoms she is showing are generally not associated with hydro. She's being assessed for autism because she is showing symptoms of being autistic. It's a very long and drawn out process but her development and behaviours are definitely outside of the "normal" ranges for a child with hydro. Separately the things she does are easily dismissable but when you put them all together it's like a flashing light. I've been saying for a while that something is not "right" about the way she behaves, and it is only recently that people have started to listen. 

On Thursday when we went to get her wheelchair she had a meltdown. There were 5 medical professionals there who all agreed they have never seen a child behave the way she did. It's hard to describe but it is very disturbing to witness.


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## kelzyboo

Just wanted to say that although my daughter had no speech delay, she does have her own little words for things. She has Autistic spectrum disorder (i'd say more Asperger's but they don't give that diagnosis anymore, just ASD). Some of her words are not even words lol such as traffic lights= nobby dobs, spider webs= calypso's, my feet= mivers and hers are beans lol There are loads more to be honest, too many to mention but she does know the proper names for them, she just prefers her own and so do i!

Can be difficult for people who don't know her as well as me, have to translate a lot but i think she'll grow out of it in the end, for now its just her way i guess and i find it quirky and very cute!

As the mother of a child with Autism i can agree with tegans_mama, it is very disturbing and hard to watch when they have a 'meltdown', especially in public as you have the added fact that people are looking and wondering A. what her problem is and B. why i'm a terrible mum who can't control her child. Its very difficult especially since nothing helps and they have to come out of it by themselves, we can try to calm them, pacify them but it doesn't usually help really.
Glad they are looking into it early for you, Abbie was only diagnosed last year age 5 and i agree, i always knew there was 'something'. It is a long process but after diagnosis the support is there for both of you xx


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## Tegans Mama

kelzyboo said:


> Just wanted to say that although my daughter had no speech delay, she does have her own little words for things. She has Autistic spectrum disorder (i'd say more Asperger's but they don't give that diagnosis anymore, just ASD). Some of her words are not even words lol such as traffic lights= nobby dobs, spider webs= calypso's, my feet= mivers and hers are beans lol There are loads more to be honest, too many to mention but she does know the proper names for them, she just prefers her own and so do i!
> 
> Can be difficult for people who don't know her as well as me, have to translate a lot but i think she'll grow out of it in the end, for now its just her way i guess and i find it quirky and very cute!
> 
> As the mother of a child with Autism i can agree with tegans_mama, it is very disturbing and hard to watch when they have a 'meltdown', especially in public as you have the added fact that people are looking and wondering A. what her problem is and B. why i'm a terrible mum who can't control her child. Its very difficult especially since nothing helps and they have to come out of it by themselves, we can try to calm them, pacify them but it doesn't usually help really.
> Glad they are looking into it early for you, Abbie was only diagnosed last year age 5 and i agree, i always knew there was 'something'. It is a long process but after diagnosis the support is there for both of you xx

Thankyou :) Tegan's speech is still improving but she still has her "made up" words. She learns the words for everything (her current obsession is asking "whats that" ) and then repeats them. She puts sentences together when we're alone but when other people are about she hardly speaks. Sometimes she doesn't seem to understand what we're saying or completely ignores us. 

Yeah the meltdowns are really, really bad at this stage. She doesn't have many because we know what triggers them and as bad as it sounds we go out of our way to avoid it. Last week we fetched her wheelchair and she got really distressed. We were in a different room to last time and she was clingy and upset from the start (although she's been in a wheelchair twice before.) The more time progressed the more upset she got and eventually she was screaming at the top of her lungs. That was when the head smacking started. She goes that when she gets really upset. She also lashes out at other people. We told her to stop smacking herself so she did. She put her hands to her mouth and I couldn't see what she was doing but when she pulled them away, her gums were bleeding. She did it again and it turned out she was digging her nails into her gums to make herself bleed / hurt herself. It was really horrible and upsetting and I felt like a really bad Mum when it happened because even if I tried to soothe her she just worse and worse. This went on for over an hour. We pushed her out of the room and in the carpark she was zipping around in her chair. Once we'd removed her from the room that freaked her out so much she was ok again.


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## kelzyboo

It doesn't sound bad at all, avoiding the triggers is the right thing to do no matter what they are, thats how i live lol Like i never cook until she's in bed (8pm) because she can't stand the smell of 'normal' food, causes massive stress and anxiety for her so i've adjusted and i eat proper meals later now, sounds silly but it avoids a 'meltdown' so its worth it!

Bless her, it must have been terrible to watch her hurt herself like that, abbie lashes out at anyone whos around but rarely hurts herself, occaisionally bites her arm but not often. Unfortunately a lot of children with ASD do self harm, its like a coping mechanism when they are anxious or stressed and i'm not sure what to do to stop that only distract her if you can, carry little toys or something she likes around in your bag and when she starts to feel anxious or hurts herself use them to try to distract her? I find if you can distract them when you see it coming on you can often avoid a meltown, doesn't always work but its worth a try!

Shes still very young and hopefully the hurting herself will fade as she grows and understands more, i'm sure they will give you lots of advice on how to stop that, more than i could give but i hope you get seen very quickly, we were seen quicker than normal because of her aggression and violent behaviours toward others and now she hardly lashes out at all, her support at school has made a huge difference in how she copes and hopefully once you recieve the support and a diagnosis things will improve xx


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## lynne192

hi hun my son is almsot 4 years old they used to put his delayed speech down to him being premature but now they think its down to Aspergers and ADHD, he is as i said almsot 4 he will be 4 in june and has very little speech and understanding.


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