How can I get a diagnosis and the help my daughter needs ?

[mummyloveslucy]

Hi my 3.5 year old daughter has a severe problem with speech sounds. Her actual knowledge of language and her vocab are very good but she is mostly unintellegeable, because she has to make the words out of what limmited sounds she has.
Her speech therapist has mentioned Verbal Dyspraxia as a likely cause. After loads of research, I have no doubt that this is what she has.
How do I go about getting her a propper diagnosis? She has recently had another assessment but that is to show how she's getting on more than anything.
I feel that once she is propperly diagnosed we should get her a statment so that she can be entitled to the help she needs.
The speech therapist is brilliant and the nursery are trying to do all they can. She has one to one sessions with her teacher every day which is fantastic.
The problem is there is not enugh communication between the SALT and the nursery. Which meens that the nursery have no guidence and therefore can't really help her.
Do you think I could get a private SALT to visit the school once a week?
I'd be soooo greatful for any advice.
Everyone is trying so hard to help her but there is a communication problem I feel.

Ask the nursery to speak to the Area IncO at the LEA then, if you feel she needs an IEP etc. DD2 has been in this type of nursery for 2 years and we have accessed all LEA funding and staff, and always had an IEP.
DD2 starts school this sept and is going state as she has just been statemented. However, your dd is still very young and a year's decent SLT may go a long way to improving her communication skills so that statementing and additional support is not necessary (and you can sail off down the private route happily). To be perfectly honest your first priority should be to get your existing SLT to liaise with your existing nursery... I'd ask your SLT whether in her opinion she thinks your dd will need additional help at stat school age - at least you'll know potentially what the future holds.
don't be tempted to swallow the prognosis whole tho... we were told dd2 was unlikely to be able to communicate verbally and were advised to start using sign, and probably looking to computer-based communication later. she's now totally verbal, although requires SLT for clarity.
hope you get nursery and SLT talking.

BabaYaba- Thanks for that info. That is very interesting. If we had to pay for extra help on top of the school fee's, there would be just no way we could ever afford that. If she'd get better help at a state school then it would be pointless her staying in private. She would be very upset though and tends to shy away in big groups of people.
I really need to talk to the school about this. I'd be willing to work very hard to keep her at the school if it was the best option for her. I think I'll have a look at some state schools too.
The nursery have taken on board that "Good morning is too hard for her. But are sending home flash cards saying "Hello", "Good bye"etc. They are also giving Lucy one to one time every day to help with her speech. The problem is, they don't have any guidence.

I second what romy7 says.

I really hope she can make enough progress to not need extra help at school. That would be a dream come true. I feel that if she actually got enough speech therapy now that could even be possible.
She hasn't had any in 2 months now and has another 2 weeks to go until her next appointment. I've noticed that her speech is acctually getting harder to understand. I really don't know why. She changes the way she say's words which is really confusing eg purple might be "par-poo" one minute then "pow-pay" the next.

There is a fantastic state school which is only just out of catchment. It has top marks with ofsted. It is big though and has big classes, but I might try to put her name down there. If we don't get accepted then at least we would've tried.
There is a lot to think about, that's for sure.
I mooved to a state primary at 5 after being in private and I hated it. I was very used to the indevidual attention and in a big class I was left behind. I also had dyslexia and didn't get any help really appart from a class room assistent in my last year. The teachers were quite bitchy too, saying things like "You're not at a private school now you know".
I just had a bad time really, and I don't want Lucy to go through that.

The dyspraxia could explain why her speech changes from one minute to the next. It is a difficulty with co-ordinating muscles for speech so that sounds can come out differently in the same word if said twice for example.

When you see your slt in two weeks, it sounds as though you have a lot to discuss with her. I hope she is a bit more forthcoming with support.

I think if private is always going to be a struggle then I would put her into state for reception right from day 1. Also go and visit schools, don't look at the ofsted reports without visiting the school. Ask them what experience they have of children with speech difficulties, how do they develop children who struggle in large groups etc etc etc

Thank you, I hope so too. I also find that when she's tired, stressed or over excited her speech is a nightmare to understand. It's also at these times that she gets more frustrated with me for not understanding her.

Thanks CarGirl, you're right. I think because I had a bad experience, I just want to protect her. Things have no doubt changed a lot since I was at school. I need to be more open minded.

The good state school would probubly be a good option if she could get in, but it just dosn't feel right. I get worried just thinking about it. I just couldn't imagine her there. I've always been very over protective maybe as she was an IVF baby and really special.

My eldest went to a junior school that had failed its ofsted, it failed because it had debts/poor management. It is a fantastic school, deals well with bullying (there is very little), the children are taught to get to their individual potential, they are happy, engage in class etc etc etc. Some of the more academically achieving schools are less supportive of chidren who don't fit their mould. Also many of the school local to us have special SEN clusters so one school has a speech & language cluster so the children who go their get lots of specialist SALT help whilst being at a mainstream school.

So much of choosing the best school is working out what your child needs and finding a school committed and able to try and give your child that. Also be honest about Lucy's difficulties if you go saying these are the problems she has and these are my concerns then you've laid your cards on the table.

It does sound like Lucy has quite complex speech delay the SALT that saw dd4 specifically said because my dd says her words consistently another way that was good so Lucy changing her way of trying to say words is alarming although perhaps she understands she's not saying it properly and is experimenting with trying to say it more accurately. My dd doesn't realise she's saying her stuff wrong yet so another 6-12 months before they can do some work with her.

The SALT has said that Lucy has a severe speech disorder and mentioned verbal dyspraxia then left it at that. She also accidently bited her tongue and mouth while eating or talking. She has done this up to 6 times a day in the past. This is obviously very distressing. This has improved recently though.

It's very hard to be told such horrid news and then left to deal with it

Can you look further afield at the state schools there may be smaller ones (or smaller classes). Also if you can get her statemented now she will probably be higher up on the criteria list for a place than she would be without it.

Alternatively speak to the school she's at now and ask them about bursaries etc I think if it's a charity they now have to do more bursaries etc than they used to have to or something along those lines.

She also said that Lucy dosn't have a speech delay, and that is very different from a disorder. Verbal Dyspraxia if that is what she has, she will have it for life.. It can be mannaged to a very good level but the underlying problem will remain. This is why I'm a bit reluctant to get a propper diognosis. I know that this is nessissary though to moove on.

Be brave and go for the diagnosis, perhaps the sooner she gets the help she needs to manage it the better for her? My dd2 who had glue ear & speech problems completely changed once she had grommets like a different child so much more confidence. Perhaps when Lucy gets the help she needs and her speech clarity improves then her confidence will soar. It's hard because the nursery seem so clueless about how to help her I hope that it's not negative what they're doing - from what you said in your other thread about wanting her to say "good morning" and stuff like that?

Usually SALT work closely with pre-schools I know ours has several come in to work with various children. Perhaps venture onto the special needs board and find out how to move forwards, so much of it seems to be about funding and money who should provide it etc

I don't think they do bursaries for the junior school. They do for the seniors. It is also a very accademic school. They are very caring though and have a learning support co-ordinator.

Just to let you know, I'm going to bed now. Thank you sooo much for all you help and advice everyone. I have loads of questions for SALT/ School now and lots to consider. It's fantastic to hear from people in the same situation. Any way Good Night. XX

Sounds like you are currently using NHS SALT and Lucy is having a block of therapy and then goes back on waiting list before having another block. If you do think more consistent help would benefit her, you could go privately. I think we paid £100 for initial assessment and full written report, and then £55 for 45 minutes thereafter. Whilst it is annoying having to pay for something which she should be entitled to on NHS maybe it would be worth it if more therapy now would help her cope with school when she starts. If you are interested I can pass on the website details which will help you find private speech therapists in your area.

I know it's awful making a decision about school when your child has communication problems, try and arrange to look round as many available in your area as possible and talk directly to the teachers and head and SENCO about your concerns. We decided that the school with the best OFSTED in our area definitely WASN'T the best school for dd. Good luck with everything, it must be pretty frustating for you and Lucy right now.

I was just wondering wether are NHS SALT does private work. That way she could still see Lucy on the NHS but we could top it up privatly. That way even if it was once a month she could go in to the school.

another idea to throw in the pot = some cities have specialist speech/language nurseries for kids with speech/language problems - I think they are usually run/funded by an organisation called ican (www.ican.org.uk), you might want to look into this possibility.

Yes I have heard of these but they are not in our area. She is also very happy at the nursery she is at. It is 6 little girls to two teachers. (perfect for Lucy)
They are really trying there best too. She's having one to one sessions every day. They just need more guidence.

Just a quick message before going off to a 3yr old's birthday party!

Ask your nhs slt how much therapy input she feels your dd requires at the moment (i.e. in an ideal world). It might be that she thinks she is not ready for any more input than she is receiving. However, if the therapist says that she should really have x number of sessions/week and she can not offer this, you could write to the slt manager about your concerns that your dd had been diagnosed with a severe speech disorder that requires x number of sessions at the moment and she is only receiving y and also requesting liaison with her nursery. You are much more likely to receive more nhs input if you start involving managers unfortunately.

It doesn't have to be done as a complaint and you can tell your slt that you are going to do it. The best letters we received at work were the ones that said slt input was very beneficial but there was just not enough of it. Funding for services was sometimes increased on the basis of such letters.

You could also ask if your dd is severe enough to warrant a specialist assessment and in need of a language unit in the future.

desperatehousewifetoo- Thank you, that is great advice. I will definatly see what she says. She was responding well to the therapy but at the moment is making no progress. Surely she should be more of a priority than a child with a speech delay, as delayed speech will catch up on it's own in time. Lucys will be an on going battle.

Can I just add that I'm not sure an educational psychologist would be able the most appropriate person to give nursery advice about how to support your child's verbal dyspraxia. It needs very specialist advice and a SALT is the best person to do this. The majority of EPs simply would not have the knowledge. However, if other issues arise as a result of her difficulties communicating (e.g. social problems, difficulties with learning) then an EP would probably be able to help.

in my city it's routine for EP to see kids as part of the process of determining whether they would be suitable for a language unit placement.