Is help to late

[XxAlisonxX]

My 9yr DD was tested on the Welchsler Test ( WISC-IV uk) last month after a 4yr battle with the school, upon the results of this test it showed that my DD has No short term memory or working memory and she cant comprehend verbal or text input. Which is preventing her from learning the basic skills and life skills she needs. The LEA has now decided to assess her for statmenting ( this is our 3rd attempt for this and was in the process of going to tribunal but no need now as they are assessing her.) the referals for Speach and the hospital have only just been made. is her a age against her now for she is nearly 10. We cant get any help/ support or respite to help us. do i wait or where do i go now.

Very sorry to hear about your DDs problems.

Has the statementing process begun? Did you or school apply?

Now you start/continue researching everything you can about her problems, and start working out what you or school can do to help her.

A statement by itself won't help your DD. What you need to know is what needs to be in the statement....

I am so sorry to hear that.

What sort of help do you need now? I think it might be an idea to be clear eg. SALT, etc. Was your dd tested by an ed psych? What did she suggest?

We got respite care because the school recommended us for it - they were finding ds so much hard work they thought we needed it too. Could you ask your school? I heard that is one of the easier way to get it.

When you start writing your statement, it might be a good idea to contact SOS!SEN or IPSEA for advice. Where are you based? SOS!SEN is holding some workshops which you might find useful.

Good luck.

My DS's needs are very different from your DD's but he was dx'd at age 9 (with ASD) and got his statement when he was 10. He's now at a special school where he's getting a very high level of input.

I think early intervention is always ideal - but good, intensive input can really help make up for lost years.

Well done for being persistent and getting her assessed - it's awful that her issues have been ignored for so long.

You might want to think about getting independent reports done - we had to do this as the late dx meant that we couldn't wait months pushing for NHS referrals.

One thing that I'd recommend looking at now is the options for secondary school - a nurturing school with a good reputation for SEN, or a special school, will make all the difference.

If this helps this is an explanation of my DD, She has no sence of time, danger, hazzards, road/ traffic awarness, she cant use a phone, tv or dvd, or turn the channels over, she cant recognise or remember numbers, her phonics is very poor which makes her hard to understand, speach is very immature, has no sence of her surroundings and wonders, has to be supervised all the time at home to prevent her from harm. she cant listen, process and then answer verbal, she cant read or write without great difficulty, she has been on the SAP now for 4yrs and failed 9 IEP's, she forgets where she is or going, she has erratic sleep patterns, struggles with fastenings and sorting her own clothes, she screams, paddy throws tantums, her behaviour and manorisum is immature for her age, no idea over money and its value, or know what day of the week/ month it is, cant tell you where she lives or even say her full name. wouldnt be able to shout for help and doesnt understand when her body is telling her something like a hungry tummy, she thinks it is tummy ache and then refuses to eat. this is just a general idea i could go on, The Statement assessment is in progress, and it was the ed psyc that tested her. It was ourselfs that requested the assessment every time. due to the school ignoring her needs.

What are her NC levels like? Did the WISC test show a spiky profile or was it low across all the subtests?

Has she been seen by a paed? Do you think there is an underlying problem behind all these issues?

We've had an assessment done by ICAN and I think they could be helpful for your DD - they specialise in SAL issues. They have a bursary fund to help those on a low income.

The WISC test result was bizzare thats what the ed psyc said. she is very low on all apart from picture concepts. The scores are,
Verbal Comprehension 5,5,7 ( IQ 75 5th perc)
Perceptual Reasoning 10,10,15 (IQ 110 75th)
Working Memory 5,6 (IQ 74 4th)
Processing Speed 9,10 (IQ 97 42nd)
Total IQ 87 percentile rank 19th

Her NC levels are
Reading 1c, writing 1c, numeracy 1b, reading age 5.04 (neales) spelling age 6.4( vernons)

We are waiting on an appointment to see a paed and also for a SAL Assessment.

can you please tell me what is ICAN for i have not heard of that??

Yes we have requested for her to be sent to a SNS for we feel that there is no way she is going to manage in a main stream high, plus the added fact that she would not even be able to navigate the buses to get there or find her way home, for i wouldnt be able to take her due to still having 2 younger children in the junior school,

Wow! Your DD is 9 and is working at a level 1c and you had to push for an assesment!!!!!

Absolutely unbelievable.

My DD has similar (although not nearly as bad - she is 8 and is already on the dizzy heights of a 1b :) ) problems to yours. This (the left behind survival kit) is one thing I am considering doing with her. No idea if it will work or not - but it might.

push isnt the word it was a tribunal status and ready for court dates when the edu psyc finally gave in to do the test,

My DD will be 10 in july... so by the time we have a decision she will be 10.

My DD is getting her first ever EP assessment today. And then I have an hour meeting with school on Mon to discuss it....

What do you think of the left behind survival kit?

First we are going to try retained reflex therapy - as it has helped our son so much. We are also trialling Omega Fish Oils.

And totally bizarrely something we think is helping is reflexology. We take our son there every week for his anxiety and have been very impressed with the results, so on a whim decided to try DD as well. And we think maybe it is helping.

I think one of my main worries with my DD is her age and with all this only just being confirmed will they be able to help her with all ov this, now if the school had listened to us years ago when we first noticed she probally would be as far behind as she is now. Im also worried that she is not going to be able to leave home and have her own indepandace because she lacks the basic life skills with are the building blocks for life, and with her comming up to pubity the more we try to explain the more confused she is getting and clearly doesnt understand.

These are not at all easy problems. If they had diagnosed her at 4 I'm still not sure what they would have done.

9 / 10 is not too late. No way. But what do you want to be done?

Now you have more tools to help research to figure out what needs to be done.

Nobody is going to come along and say 'this is what DD needs'. But you have the power of the internet (and us). You yourself can work out what is the thing that is most likely to work - and then make it happen.

It's an awful long time till she's old enough to leave home. You have loads of time to teach her what she needs.

You can't give up, nor can you despair - you don't have that luxury. You just have to keep fighting and keep becoming the world's expert on your DD and what will help her.

OH I have no intentions on giving up on her i cant, I have been fighting for 4yrs now and have only just got this far, if i have to fight all ov my life to get the nesessary help for her i will....

do you think it would be worth putting in a DLA claim for her??

Yes, she definitely should qualify for DLA - and a statement.

Her biggest problems are her working memory and her verbal comprehension. (Luckily) I know nothing about improving verbal comprehension - would a SALT be the right person to help?

There are 2 or 3 SALTS on this board, so start a thread about improving verbal comprehension and you should get good responses.

Working memory is a problem my DD has, so it is something I have been obsessively researching. Jury seems out over whether or not it can be improved. However there are loads and loads of interventions that some people claim help.

So I think she should definitely be getting 1:1 every day doing a working memory intervention. A TA can either play memory games with her - or there are a lot of online programs which claim to improve your memory.

I don't know if they work or not - but they're definitely worth trying.

And those are the 2 things I would focus on. Improving her verbal comprehension and improving her working memory.

If you spend a year doing 10 mins a day on those 2 things there is no way they won't improve....

Good luck.

At the moment and for the last 2yrs she gets only 30mins a week for extra support and this is in a group NO 1-1 is given, she also goes to ABC club twice a week, basically the provision the school is making for her has been the same for years with next to no progress. The things the Edu Psyc suggested still hasnt been folowed up,

thanks Indigo i will do that and see what comes about.

Yes - the EP report should have given recommendations for what the school to do about it.

You need to make an appt to see the SENCO next week and go through the whole EP report with her and ask her exactly what they are going to do and when.

You need to insist they do everything the EP recommended.

Also, at the same time, inform them you will be applying for a statement.

Is there any chance of changing school? This one is clearly negligent....

No unfortunatly there isnt another school to currently mover her to, the school knows that the statment assessment has started the schools SENCO just tells me to wait untill the next CAF meeting to discuss anything due to the SEN and EP now waiting on the results of the assessment.

Yes you can apply for DLA - look at Cerebra website for a fab guide and also Contact a Family.

You may be able to get direct payments eg to pay someone to help out - its more likely that you will get DP than an overnight respite home etc as they tend to be scarce and for children with severe physical disabilities / SLD/ challenging behaviour - well they are round here anyway. Contact a Family have info. You can ask social services to assess you as a carer and your child as a disabled child. There may be leisure activities eg holiday clubs etc with trained staff you can access or support to go to clubs etc

You could consider making a complaint that this was not assessed earlier and needs not met. In theory you might even be able to claim negligence but that is not easy to prove in education cases. You could go the complaint (to your council) and Local Govt Ombudsman route and may receive some financial redress which would allow you to pay eg a private SALT to try and catch up some lost ground.

You should certainly be asking for some significant professional input now even without a statement. Some special schools do outreach into mainstream schools and if that exists you should be asking for some urgent training and support to go into school now.

Apply for a statement (look at IPSEA website). Also look around yourselves at specialist schools eg private ones or out of area anything you can get to and see if you can find somewhere that will be able to help work on these issues and will concentrate on life skills, independence skills etc as well as just academics. You need to show the school are not meeting needs but also find somewhere which you think will meet need. You don't have to settle for the nearest, take time to look around at whats available. That way you have good arguments if and when you get a draft statement as to what should go in it and why.

Sorry you're in such a pickle.

I have no idea why the SENCO is fobbing you off. But you should be able to see the SENCO anytime - not just at a CAF meeting.

You are going to have to esculate this now. Request another meeting with the SENCO for next week, and cc the HT in the request.

If you don't get a meeting with the SENCO next week, make a formal complaint to the chair of the board of the governors (again cc in the HT)

I agree with IndigoBell. I would make the request to see the SENCO in writing if you don't already - it's useful to have a paper trail.

ICAN is a charity for children with speech/communication difficulties. They run a couple of schools, though it's hard to get funding for them but it could be worth looking into if there is one near you. They also have assessment centres at their schools where they'll do a multi-disciplinary assessment over two days - and I think your DD fits the profile of their pupils pretty well (my DS's issues are slightly different but I still found their report and recommendations extremely useful).

You also might want to get in touch with Cerebra as they have a scheme where you can apply for vouchers towards private SALT. They say it's for children with a brain-related condition so I'm not sure if you'd need a formal dx, but it's worth looking into. The Cerebra charity is pretty good generally, their DLA guide is v. good and in some areas they can send someone out to support you.

Afasic is another charity which might be helpful to you, they also focus on speech and language problems and they have a parents' helpline.