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Parents of dyspraxic children please come and reassure me... panic setting in

(24 Posts)
pinkytheshrinky Fri 01-Jul-11 21:33:26

My DD who is almost 8 has long standing speech and language problems - she missed very milestone by a mile, never crawled and didn't speak until she was three. She is is mainstream school on school action plus and gets a huge amount of nurture classes and one to one. The school are gently telling me that they have done as much as they can as she is going into Juniors next term the gap between her and her peers is huge - socially and academically. She tests at 2yrs 7 months for her working memory

I had to bring her home from her sports day today because she found everything so difficult - was heartbreaking having her tell me that no one wants to play - she asks if she can go to their birthday parties and they say no - my poor baby - she is very young and naive.

She does have ed psych input and informally they told me that they feel her basic problem is dyspraxia - we are going down the private ed psych route for a full ed. assessment to have this confirmed (not that our LEA pay any attention to that)

Sorry this is epic but really the absolute panic is setting in about how things are going to pan out for her.............. I have been told by her SENCO that she cannot support her going into mainstream school but she does not for the criteria for special school as she has no behavioural problems/mental impairments.

I just wanted someone to give me hope to be honest I am so scared for her - have no idea what to do about schooling etc.

pinkytheshrinky Fri 01-Jul-11 21:38:35

....

janetsplanet Fri 01-Jul-11 21:53:26

my youngest (7yr old) goes to a mainstream primary school with a language resource base attached. shes been there a year now and has come on great with her speech, but is still behind. she has verbal and oral dyspraxia and also the physical dyspraxia. things aint too bad. its the not knowing that awful. i panicked just as you are, but things will be ok

metimenow Fri 01-Jul-11 22:11:36

I think you need to get a statement for her then you will be in a position to decide what sort of school she needs. She should be able to get a statement even if she has no behaviour problems. It will be a fight to get a statemet but if you can get some reports to back you up that will help.If she is so far behind she is going to need a lot of support in the classroom.
It will get better once its decided what support she needs and what sort of school setting is best for her.

pinkytheshrinky Fri 01-Jul-11 22:22:49

The school were the ones who suggested a statement - it isn't straightforward because she goes to school in a different county to the one we live in. I think the senco is just trying to tell me that socially she is miles behind and needs more nurture and protection. All the time she was in infants it wasn't so noticeable but as they get older she really sticks out.

Just very concerned about the long term - they talk about her at school in terms of her being like a pre school child and am so worried that she will never be catch up and be able to be fully functioning in the world (i know i am jumping the gun with this)

castlesintheair Fri 01-Jul-11 22:32:30

I agree you should try and get a statement for your DD asap. Can the school help you with it? Have a look here Ipsea there is lots of advice for SEN and statements. It might also be worth having your DD assessed by an OT. They can diagnose dyspraxia. You can get a referral from your GP. Or go and see one privately.

My DS, also with no behavioural issues, has had a statement since end of Reception for a language disorder and mild dyspraxia. He's in Year 4 now and no longer has any language problems and has been discharged by both nhs/private OTs for dyspraxia. My point being, there is lots of help out there and getting it now should benefit your DD enormously.

pinkytheshrinky Fri 01-Jul-11 22:34:26

castles - thank you for that

metimenow Fri 01-Jul-11 22:38:15

She will need a statement or they will not give her all the support she needs.If she is really sticking out as being different maybe a special school would be the best option as she would get more attention and they could spend time trying to bridge the gap. My son has dyspraxia, adhd and autism and he goes to an independent special he has really made loads of progress there. I think your dd will also make progress when it is decided exactly what she needs to improve. My son was always behaving a lot younger than his peers but now he has really caught up.

janetsplanet Fri 01-Jul-11 22:42:46

at the time DD got her statement there were no behavioural problems. but if you want/expect help for your daighter, you NEED a statement.
when the speech unit was first mentioned, i was of the mind 'none of my kids are going to a special school'
i only wish id changed schools then instead of waiting over a year

pinkytheshrinky Fri 01-Jul-11 23:02:31

The SENCO has already clearly said that she would not fit into the special school provision available. She does have a very unusual profile and has tested as dyslexic. The schools ed psych also said the same. When I asked about where she should go if she couldn't go to mainstream or special, she said we have no provision for your DD..............

Admitting they cannot provide for her (and by this they mean secondary) is really scary. But to be honest I am now very worried about what to do for the rest of her junior years as she is so marginalised but has only just realised it.

metimenow Fri 01-Jul-11 23:12:03

If the LA are admiting they have not got a school to meet her needs you need to be looking at the independant schools. The senco will tell you she wont get a place in a special school to stop you trying because it will cost the LA loads of money to send her to a special school. They have to educate her and she is not going to manage in mainstream so it will have to be special school.

pinkytheshrinky Fri 01-Jul-11 23:29:01

My feeling is that no miracle is going to occur - she has a huge amount of input, way over the 20 hours her school action plus allows for. The only junior provision they have is in a speech and language unit which is bolted onto a mainstream school but her speech and lang issues are symptomatic of her problem iyswim - she does need help with the dyslexia and dyspraxia as they are causing the speech problems (this will be confirmed by a private EP) and I feel that these conditions needs help for her to improve all round and there is no dyslexia provision in our county - in the next county there is a dyslexia provision but it amounts to 5 hours a week!

metimenow Fri 01-Jul-11 23:48:55

Get the statement because you need the amount of support wrote in the statement otherwise they could just stop it because they want to save money. I would not let the LA get away with just saying there isnt anywhere for her ring them and ask them where they are intending she goes to. Dont give up on her making progress when she gets the help she will make progress. It is just a long journey and will take a lot of hard work.

flyingmum Sat 02-Jul-11 15:20:48

OK First you need to get a statement. To do this you will need lots of specialist reports. You will also need to start viewing specialist provision so you can get it named.

Then: Special School. The SENCO is talking about the LEA special school provision because that is what she knows about. What a lot of primary SENCOs don't realise is that there are independent and non-maintained special schools out there. There is at least one I know of that will fit your daughter's needs. They are brilliant because they have on site S&L and OT provision plus everything else. I think you need to heed what your SENCO is saying. They sound quite a supportive school and really you need your daughter in an appropriate peer group before her self esteem starts crashing.

It is bollocks that you can only go to special school if there are behavioural difficulties. My son (dyspraxic, dyslexic, aspie, S&L, + some other shit) has no behavioural difficulties apart from those caused by accute anxiety. He is the niicest kid in the world and has never hit, kicked, sworn or done anything 'behavioural' in his life to anyone else. He did used to have meltdowns which were loud! He goes to special school for secondary - had been in mainstream primary.

What I suggest you do is goggle special school in your area or, if you don't mind boarding (she is a bit young though!) in whereever you are happy. Remember your daughter may well have to travel at least an hour each way to reach her provision but that's fine. It adds to their all round education.

If you live in the south of England I suggest you try: More House School, Blindely Heath; St Dominic's School, Hambledon; St Catherine's School, Isle of Wight; Newick House School, Haywards Heath (LEA); Philpotts Manor, West Sussex (I think); Stanbridge Earls (might be boys onlly not sure) in Hampshire; Have a go.

It will get better.

pinkytheshrinky Sat 02-Jul-11 18:08:57

Actually Stanbridge Earls is on our radar - i have spoken to them and we are going to have a look around on their open day - of course she can only go there when she is 10 - I think the SENCO was saying she didn't think she would suit a special school as her learning problem is so specific - she has a normal IQ and vocabulary and it needs more targeted work. She said that lots of children in special schools have sometimes quite extreme behavioural stuff going on - she is talking about the two that are localish to us and feels that it would not benefit her but she does feel that she needs much more nurture than a mainstream school can offer.

The statement is in process - we are going to a private EP asap and also a private SALT - the school have honestly moved heaven and earth to help us - the communication has not always been the best but their intention is good. Our other older DD is dyslexic too but probably not behind enough to be statemented (she is however on school action plus too)

I will look into those other schools too - thank you to everyone who has offered advice. Honestly my heart bleeds for her - she is such a lovely girl and needs her potential unlocking - if only the needs of the children were paramount rather than trying to find the cheapest approximation of education whether it is appropriate or not (I know this is unrealistic but it is very frustrating)

All you kind words have given me so much hope.

flyingmum Sat 02-Jul-11 22:32:00

Your SENCO is talking BALONEY. All the schools I have listed are for the cognitively normal with severe specific learning difficulties. My son has taken GCSEs. In fact he didn't get into Stanbridge - his difficulties were too complex and they are not geared up for full on dyspraxia (their OT had left when we looked round which was a long time ago now) and major dyslexia. It is lovely though and very very good - I was really impressed with it. If you are down that neck of the woods perhaps your SENCO is thinking of Grately, which is very good but would take a more 'challenging' child than say somewhere like Stanbridge or the others I've mentioned. I wouldn't say your daughter would fit that from what you have said.

working9while5 Sat 02-Jul-11 23:14:46

Pinkyshrinky, a speech and language unit usually has a lot of dyslexia experience and specialism.

Our last cohort of Year 11s all took GCSEs. Many of them got a majority of results at A-C. It is a language unit attached to a mainstream school. All our students have specific difficulties related to speech and/or language with normal IQ etc.

Have you contacted Afasic? It is a charity for children who have speech and language problems. They have a helpline and/or you can post a query and they will email a response.

pinkytheshrinky Sun 03-Jul-11 01:00:35

The speech and language unit is attached to a junior school - there is no provision after that - none at all so we have to look to independant schools - The senco had never heard of Stanbridge Earls.... I am now looking at all the ones mentioned above and getting further information - the problem is that i was worried about secondary school but I think I need to do something way way before that time because she is not coping.

St Dominics might be a goer as we are Catholic... staying in the Catholic system would be an amazing bonus and it starts from Key Stage 2

flyingmum Sun 03-Jul-11 12:24:16

St Dom's has fabbity fab therapy service. Children can start from year 5 for sure and possibly from year 4. They do a range of Entry level and GCSEs and now has a sixth form (although yet to be open for girls but I think they are working on that!). Phone Pam Faithfull there. She is lovely and the admissions bod.

pinkytheshrinky Sun 03-Jul-11 18:49:45

Yes apparently they take children from 8 years of age - their OFSTED is a bit pants but then again the school DD goes to now did not fair well in OFSTED inspections and it has been wonderful for both of my daughters.

I will give that lady a call and I have already requested a prospectus. I have got to sort something out asap - she said earlier today (after the sports day fiasco of Friday) that she didn't want to go to school any more - really sad because she has never been like that. Saying that I have noticed that she no longer wants to go to her after-school dancing club any more because for 2 years she cannot learn the steps and is now only allowed to dance with the reception children because she has neither the memory or the coordination to do any of the dances... I need a magic wand to make it all ok for her (and a statement)

pinkytheshrinky Sun 03-Jul-11 18:50:38

and thank you, thank you so much

flyingmum Mon 04-Jul-11 15:09:17

St Dom's has a new head (from about Jan 2010) and things are being pulled up by bootstraps having undergone a bit of a rocky time for a while so Ofsted report should (hopefully) get better. They perhaps don't push academically as much as they should. However, there is lots and lots of support and they also have access to things like drama and trips that a mainstream school would be windy about with kids with so much complex SEN.

The scariest thing about the place is the drive up - It's like going up the Alps!

drivemecrazy63 Mon 04-Jul-11 18:01:09

i was in this same position a year ago ds 11yo asd dypraxic and not getting on in ms ,he had more than one placement but just coulnt manage and neither could the schools, hes now in SS and happiest ive known him he is becoming calmer more loving and tolerant of others, sports days were one of the worst days in the school calendar . hes now getting therapies, loads of salt and has actually made friends with a few boys he dreaded sports day this morning as he usually had meltdowns at them and ended up going back inside and missing out , today he was the star on his team was happy as larry and came home from school saying he had a brilliant day,,,, what a difference a year has made im so positive about his future now when a year ago i cried and cried he was bullied and ignored and never went to parties , saturday he went to a party had a great time (a lad in his class) and he has another comming up in school holidays (he neever got invited before) so please please dont feel its all so bleak as it often does feel like i know when your dcs come home saying no one plays with me ii hate school i want to die as my ds used to because given the right help the right environment anything can happen

pinkytheshrinky Mon 04-Jul-11 18:27:07

I spoke to Pam Faithfull today and she was delightful, she just couldn't have helped me anymore if she tried. Thanks so much for the tip!

The DDs are seeing private Ed. Psych on Thursday - am on a mission!

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