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Eye gaze in mainstream

GsmumGsmum Posts: 11Member Listener
(just in case my other post gets missed!)
Do you know any children using eye gaze in mainstream? My ten-year old (CP, non-verbal) is in a mainstream primary and I'd like him to go to mainstream secondary.  He has eye gaze and I suspect it would be so much easier if he had a friend (or friends) at school with similar needs.  I'm trying to find out what other families have done.


PS I did see the story about Maria in 100 days/100 stories but comments are closed.  Does anyone know her family?

Replies

  • forgoodnesssakeforgoodnesssake Posts: 59Member Talkative
    I know a boy who uses eye gaze in mainstream and will be going to secondary in Sept.  he is in Cumbria.  I don't know if they come on this forum or not but I could point his mum in this direction
  • AlexAlex Posts: 581Administrator admin
    edited February 2
    Hi @Gsmum, welcome to the community.

    It's a great blog isn't it! (https://blog.scope.org.uk/2015/04/24/i-use-a-communication-aid-called-a-mobii-to-help-me-speak-100days100stories/)

    Maria's mum @NikiM is on the community, hopefully she can share her experiences. 
  • NikiMNikiM Posts: 36Member Whisperer
    edited February 2
    Hi,  I'm Maria's mum! She is now 12 and doing well at school with support. She is the only child at the school using eye gaze but has made loads of friends and is building an active social life outside of school. She has always been an engaging and resilient child and incredibly nosy!  She lives bring at the centre of things and we felt mainstream was right for her eventhough she is academically behind her peers. I'd be happy to answer any questions you may have. X
  • GsmumGsmum Posts: 11Member Listener
    Oh yes please! I'm compiling a list of questions for you and other families (I've sent feelers out on FB too).  Are you comfortable answering them in a public forum or is it possible to message you directly? Thank you.
  • NikiMNikiM Posts: 36Member Whisperer
    I'm happy to answer them here as they may be helpful to others too!
  • GsmumGsmum Posts: 11Member Listener
    edited February 2
    OK!  Here goes (and thank you):

    - What does Maria use the eye gaze device for? Is it just for communication or is it for games, learning, entertainment or something else?  If it’s for things beyond communication, how is it accessed (Windows controller, other?). Any specific software you would recommend?

    - Who is the person responsible for the device? Is there one person who is most familiar with the device and the software who keeps things ticking along and progressing for Maria? If this person isn’t a parent (because I think it often is), how much time is budgeted for working on AAC?  Frequency? Are there any outside services, agencies or consultants involved?

    - Regarding the curriculum, you say that Maria is academically behind? Is the work differentiated for her?  If yes, who does the prep work? LSA? Teacher? SENCO? Other?  Or does she have a peer group who are taught at a different pace? 

    - Any top tips?!

    Thanks again for replying.  There’s so much to think about and plan for.



  • NikiMNikiM Posts: 36Member Whisperer
    OK.  So Maria uses a Mobi 2 device with Mind Express software accessed via eye gaze.  She uses it for communication,  education,  email and texting.  She also has a desktop at home accessed using eye gaze which she uses to access the Internet,  play games etc.  Her communication software is uploaded to it also. 

    Maria works with a Specialist Slt at school. She is written into her Education, Health and Care Plan 2.5 hours per week. She works on Maria's expressive language development and programmes the aid.  Maria also has full time LSA for personal care(she also programmes her aid and prepares work),  a full time High Level TA who differentiates her curriculum and a Specialist teacher with experience of working with a child using a communication aid.  The teacher is bought in from a specialist agency for 20 hrs per week and is funded through her plan also.  Phew!! The teacher works with the school and HLTA to help them differentiate.  I believe this should always be directed by a qualified teacher. 

    Maria is doing a reduced curriculum and she is at a school that offers alternatives to GCSE's,  ie entry levels and ASDAN qualifications which means she can stay until 16 which matters as she has made friends.  

    Ask the school what they currently offer in terms of small group work that your child can join and what type of differentiation they currently offer that they can easily adapt ie some work for dyslexic children can be used for Maria. What do they do about friendship groups although I would say that it helps if they are able to actively engage in mainstream ie not a passive communicator but confident in speaking out as mainstream schools promote independence and expect all kids to be resilient. Maria is in a school with 1500 kids so she can't be a wilting flower!!  What I particularly liked was that they expected her to be benchmarked with all the students at the beginning of the year and asked her teacher what level she would have progressed to at the end and held her to that. All children are expected to make progress however small and it is monitored in a way I hadn't seen in the special schools I visited. 

    Hope that helps.  Xx
  • GsmumGsmum Posts: 11Member Listener
    edited February 2
    Wow!  This is great stuff.  Thank you so much.
    More questions (and if you go quiet I'll understand that I've pushed my luck):
    - did you have a particular professional or professionals who advised the extra TA hours? And also the Specialist SLT, is she borough/NHS suppled or again also from an agency?  And can you share the teacher's agency name?  
    Is the SLT's speciality AAC or kids with CP? 
    We've not got a Specialist SLT (she's a very nice lady with minimal AAC experience) and the only differentiation we get is whatever an overworked class teacher can squeeze into her normal prep time.  We've got a job-share LSA position for 32 hours.  That's it.  I think it explains why AAC targets are overlooked, he isn't using his device for anything beyond basic communication and the homework isn't more appropriate to his level or abilities.
    It's a challenge to do all this fighting and planning, but I think mainstream has been worth it.  It's so stimulating and exciting.  And I think it's useful to be in a more academically challenging setting.
    Fabulous.  You've already given me inspiration to keep at it for the EHCP. Such a help.
    x
  • NikiMNikiM Posts: 36Member Whisperer
    Hi.  The Specialist teacher agency is called Candle and they are based in Cumbria but luckily recruited a London based teacher just as we needed one! 

    We privately recruited the SLT.  She has over 25 years experience of working with children using communication aids.  The LA then acknowledged they had no one with that level of expertise in borough and so agreed to fund her themselves. There are only 2 or 3 SLT in the whole of England with this level of expertise so huge gap in the market!! 
    We used an SEN advisor to help us get the plan right and she advised on teacher hours but school actually asked for more which we got.  Only word of caution is don't allow all hours to be delivered 1:1 as they will then never be in class which defeats purpose of being mainstreamed.  So some of the hours should be sitting in lessons and that also helps the Specialist teacher to work with class teacher to differentiate. Don't get me wrong all of this is a monumental feat of collaboration and some good will/attitude. If the school have that to begin with you are on to a winner!  The SEN adviser is called Ann Rhodes.  We paid privately for her. 

    Xx
  • forgoodnesssakeforgoodnesssake Posts: 59Member Talkative
    Hi, my son (18) does not currently use eye gaze in school (he has always used direct access with a keyguard) but has just got a new communication aid (1-12+) and his aim is to partly eye gaze and partly direct access with keyguard.  He is just coming to the end of mainstream 6th form and has an offer from Newcastle Uni to study maths from Sept!!  His statement (he doesn;t have a plan for various reasons) is much like the one NikiM describes above and has been like that right through school  (after tribunal aged 2)...there was a big increase in TA hours when he started secondary as they needed time to be with him in lessons and also to liaise and prepare resources (mainly on Grid2)  I think it works out at something like 2:1.  There was until recently specialist language teacher involvement (from LEA) and his SALT right from age 15 months happens to be an AAC person!  He also has a team co-ordinator from a specialist org. bought in by the school/LEA and it is also Candle!  We are in Cumbria.
    He did 4 GCSEs in the end: English (Foundation) Maths, Physics, Chemistry and an additional Arts Award in his own time which counts as a GCSE.  In 6th form he did A level maths (A*!) and an Extended Project Qualification and this year he is doing AS physics.
    I found it very hard to get any useful info about physically disabled AAC users doing GCSEs in mainstream and was shocked to find out that very few actually do more than one or two.  I did approach Scope and a Scope school and at that time (about 5 years ago?) the Scope school said that they had not actually entered anyone for GCSEs...  I think/hope things may have improved a bit now.  There are definitely pockets of good practice but it can be very hard for a mainstream school, with no experience of AAC but who want to do the best they can, to get the resources and support they need which is why a good detailed EHCP is essential and MUST have speech and language needs in the educational needs section, not just as a health need.  All the best
  • GsmumGsmum Posts: 11Member Listener
    Thank you so much to both of you.  
    Obviously I've got a bit of a battle ahead of me but it really helps to know what I should be pushing for. I don't think having extra TA hours, additional AAC support and specialist teacher involvement will clear away the barriers but it will certainly be an improvement! GCSEs are definitely a goal for us (and why not university?).  
    There isn't much information for kids like ours, is there? I'm glad I found this online community. Thanks again.
  • forgoodnesssakeforgoodnesssake Posts: 59Member Talkative
    I meant to add that Scope showed no interest in pursuing the issue of lack of access to educational qualifications such as GCSEs or A levels for AAC using kids with CP....has that changed?
  • GsmumGsmum Posts: 11Member Listener
    A bit of a side issue, but linked to the level of support- do your kids have power chairs? If so, who initiated the assessment and saw the process through to chair delivery? Who provided training and is there ongoing support? I'm wondering if there are outside agencies that do this as our borough has little relevant expertise in house. Thank you! Again!
  • NikiMNikiM Posts: 36Member Whisperer
    We got a chair via Whizz kidz but Maria doesn't use it as issues with access and sharing position!! 
  • forgoodnesssakeforgoodnesssake Posts: 59Member Talkative
    My son qualified for power from NHS at age 3 but what they could provide was awful!  So at age almost 5 he got first Permobil Koala from Whizz kids then about 5 years later got bigger Permobil also via Whizz Kidz (great chairs).  Lots of issues and access to the controls (due to poor hand function) was a biggie.  However cos his dad is pretty handy in the tech and electronics dept we sorted it ourselves.  Seating was OK and was assessed by WK OT.  We had to pay all costs after than, like service, new batteries etc.  At that time our WCS did give out vouchers towards power chairs (about £1400) but now they do not.  So it is worth asking, cos some still do.  Biggest problem now is that Whizz Kidz has completely changed and no longer provides Permobil chairs or that kind of higher spec.
    So for his new chair (Dec 2016) we had to go the rounds of different funding charities and Justgiving!  I did get an OT to look at the seating but in terms of assessment, delivery, ongoing support etc that is all down to who you buy the chair from.  His communication aid mounting is provided by our regional AAC hub (ACE)

  • GsmumGsmum Posts: 11Member Listener
    So Whizz Kidz is on my call list for this week, if at the very least for an assessment.  Thank you!

  • Kim_AssistiveTechKim_AssistiveTech Posts: 47Member, Community advisor Whisperer
    I meant to add that Scope showed no interest in pursuing the issue of lack of access to educational qualifications such as GCSEs or A levels for AAC using kids with CP....has that changed?
    I am glad to say that at the Scope school I work at (Craig y Parc) - those students who are able to take GCSEs, do so with full support from me (the assistive tech) to ensure that they can take them using any AAC necessary.

    A website you all may find helpful is communicationmatters.org.uk - they have a few bits on AAC users and exams:
    It's a really useful website and they're a really helpful bunch so if you have any questions then don't hesitate to email them. 
  • forgoodnesssakeforgoodnesssake Posts: 59Member Talkative
    Really glad to hear that about Craig y Parc ..it was Ingfield I was told had not put anyone in for GCSEs about 5 years ago.  And I can vouch for how nice Communication Matters are...I became a Trustee in September !!  Thanks for the link, I was a bit slow off the mark there.  Another org for wider support for the AAC user and family is www.1Voice.info
  • GsmumGsmum Posts: 11Member Listener
    Do you know anyone who does what you do as a buy-in service? As far as I can tell my borough has nothing on offer and there aren't any local specialist schools with the expertise. I think it's down to me to find someone like you to help my son.  Thank you.
  • forgoodnesssakeforgoodnesssake Posts: 59Member Talkative
    The abstract on "what the exam boards said" is actually based on my son's situation!

  • Kim_AssistiveTechKim_AssistiveTech Posts: 47Member, Community advisor Whisperer
    Really glad to hear that about Craig y Parc ..it was Ingfield I was told had not put anyone in for GCSEs about 5 years ago.  And I can vouch for how nice Communication Matters are...I became a Trustee in September !!  Thanks for the link, I was a bit slow off the mark there.  Another org for wider support for the AAC user and family is www.1Voice.info
    That's great! Preaching to the converted :)
  • Kim_AssistiveTechKim_AssistiveTech Posts: 47Member, Community advisor Whisperer
    edited February 2
    Gsmum said:
    Do you know anyone who does what you do as a buy-in service? As far as I can tell my borough has nothing on offer and there aren't any local specialist schools with the expertise. I think it's down to me to find someone like you to help my son.  Thank you.
    Unfortunately I don't know of anyone who offers a service like that. Which borough are you in? I'll put something up on my twitter to see if we can find anyone, it's a great tool to find professionals out there that are hard to find! 
  • GsmumGsmum Posts: 11Member Listener
    edited February 2
    We are in London. I did hear of a lovely chap who does this sort of thing but he's in Leeds! Someone a touch more local would be great.  We've had Cenmac input but it's one annual visit, followed by a report and a voucher for training.  It doesn't go very far. Thanks very much.
  • Kim_AssistiveTechKim_AssistiveTech Posts: 47Member, Community advisor Whisperer
    Gsmum said:
    We are in London. I did hear of a lovely chap who does this sort of thing but he's in Leeds! Someone a touch more local would be great.  We've had Cenmac input but it's one annual visit, followed by a report and a voucher for training.  It doesn't go very far. Thanks very much.

    I've not had much luck on twitter unfortunately. It might be worth getting in touch with Daisy at Smartbox. She's an Assistive Technologist and Speech and Language Therapist who is based in London, so even if she wasn't able to help you personally she may know someone who could?

    Smartbox have also got a great community facebook page, so there may be others who could help via that way. 
  • GsmumGsmum Posts: 11Member Listener
    Thanks very much for trying.  Daisy is doing some training for us so I'll ask her then!
  • Kim_AssistiveTechKim_AssistiveTech Posts: 47Member, Community advisor Whisperer
    Gsmum said:
    Thanks very much for trying.  Daisy is doing some training for us so I'll ask her then!
    No problem, sorry I couldn't be of more help but hopefully Daisy will be able to help you out :) Let us know how you get on, good luck.
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