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 Post subject: CP, EP and Irlin.
PostPosted: Tue Oct 15, 2019 12:47 pm 
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Joined: Tue Oct 23, 2018 11:24 am
Posts: 12
Dc has Cerebral Palsy which has caused weakness down their left side and they use a splint and built up shoe. This has not proved to be too much of a problem so far, mainly because we can see the physical effects and make allowances for them.
Dc is a bright child and has always been one of the highest achieving children in their year. About 10 months ago dc started to complain about having problems seeing the board clearly, especially towards the end of the day. Different seating positions in the classroom were tried, to no avail. When dc watches the tv they sit with their head at an angle, favouring one side over the other. DC’s eyes were tested and there is no physical problem with sight or the eyes themselves. Irlin syndrome was suggested but the hospital state that they can’t use that term although there is a processing problem. They suggested overlays or glasses. The school Senco spoke to us and acknowledged that there is a processing problem and said that irrespective of the fact that dc is bright they should have extra time for exams to even the playing field. As dc was soon to sit the 11 plus we contacted the school setting the exam but was told that we needed official paperwork from an EP or similar. Despite our best efforts we couldn’t get to see an EP until after the exam (2 weeks ago). The EP was going abroad and fitted us in at the last minute and only had time to give us a brief outline of the results before going away. He spoke to my wife and gave her the scores; verbal, 160, 99.9%, non verbal 126, 96%, working memory 99.7% and visual perception 67%. This is where the problem obviously lies. Dc does get more tired than able bodied kids and we always assumed that it was because of physical limitations. After seeing the EP dc was exhausted and went straight to bed. EP states that dc doesn’t need extra time for exams but does need “ brain breaks” and he will be doing a full report and come and discuss it with ourselves and dc when he returns.
Should dc have failed the 11 plus, would this be grounds for appeal? We were unaware of the problem and unable to get a diagnosis in time to have the necessary paperwork. From what I understand Irlin syndrome is a problem with reading, dc is a voracious reader and the problem seems to be with blocks and patterns rather than the written word. We won’t know the result of the exam for a couple of weeks and hopefully dc will pass but should they not where would we stand?


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 Post subject: Re: CP, EP and Irlin.
PostPosted: Tue Oct 15, 2019 2:32 pm 
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Joined: Wed Dec 04, 2013 9:28 am
Posts: 69
Does DC have an EHCP?

Next question! Is DC under a specialist eye department? For a few years, my DD was seen regularly by the Eye Dept at our local hospital. Glasses were prescribed but DD wouldn't wear them. After much nagging, I got them to refer DD to GOSH, who diagnosed a whole range of visual problems, in addition to the myopia and astigmatism already picked up, including cerebral visual impairment, where the brain damage impacts on how the brain interprets the messages from the eyes. This led to a referral to the specialist teaching service and useful visits from the VI teacher. DD has CP.

Eye sight often deteriorates around puberty and the tiredness often associated with CP can get worse as the body gears up for growth spurts etc. An anecdote from an ophthalmologist is that myopia is more common in children who read a lot and don't spend much time running around.

If you need to appeal, I would certainly include the eye issues but do make sure the information is explained clearly. Hopefully, your DC has done well.


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 Post subject: Re: CP, EP and Irlin.
PostPosted: Wed Oct 16, 2019 12:12 pm 
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Joined: Tue Oct 23, 2018 11:24 am
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Hi, thank you for your reply.

No, dc doesn’t have an EHCP. We’ve always tried to carry on as we do with our other kids and the battles we had trying to get the initial appointments for physio etc were somewhat dispiriting. They don’t want to do a lot and try to discharge at every opportunity even with dc developing scoliosis.
Dc has now been discharged from the Orthoptic clinic where they were seen for assessment in the Reading Difficulty Clinic. Assessments of eye tracking and visual perception skills were within normal limits, glasses are not deemed necessary at this point. We were advised to proceed to possible colourimetry assessment outside of the hospital eye service. There is an issue and I’m not sure that overlays are the answer. As I said above, dc watches tv with an angled head so that one eye is closer than the other and sometimes, when doing homework, lifts up books to about 6” from their face. Having said that, they love reading and read books with no complaints. Finding out what is causing the difficulties is our priority and the first stop was the Orthotic Clinic, the second an EP. Perhaps a more detailed eye assessment would be advisable.


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 Post subject: Re: CP, EP and Irlin.
PostPosted: Thu Oct 17, 2019 8:09 am 
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Joined: Wed Dec 04, 2013 9:28 am
Posts: 69
Sadly, 'battle' is a word that seems to come up a lot in the world of SEND.

Scholiosis is common in CP and often no action is needed. However, it should be monitored, especially if your DC is mobile as surgery may become necessary. If your DC is not currently being seen by the physios, you can ask your GP for a referral to an orthopaedic surgeon.

Our local hospital did an excellent job with DD's younger siblings but her eyes were just beyond their knowledge and experience, probably because some of her visual problems are more brain than eye. If the department doesn't have the experience of dealing with CP then ask for a referral to a specialist department, maybe at your nearest children's hospital.

Irlens is a difficult one as not everyone recognises it as a condition. Staff at DD's old school were involved in some research and they found that 80% of them found reading easier with coloured overlays. You could try printing black text on different coloured backgrounds to see if any help DC or an online retailer sells sets relatively cheaply.


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 Post subject: Re: CP, EP and Irlin.
PostPosted: Wed Oct 23, 2019 1:46 pm 
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Joined: Tue Oct 23, 2018 11:24 am
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Fortunately dc passed without any extra time or brain breaks.


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 Post subject: Re: CP, EP and Irlin.
PostPosted: Wed Oct 23, 2019 5:16 pm 
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Joined: Fri Mar 07, 2014 8:14 am
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That is fantastic. Very well done to him


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 Post subject: Re: CP, EP and Irlin.
PostPosted: Wed Oct 23, 2019 6:24 pm 
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Joined: Mon Oct 21, 2013 7:59 pm
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That is great news but continue to fight for the Ed psychs rest breaks to be acknowledged as his standard way of working. Involve the exams officer and the SEN at his secondary school - he will need rest breaks for GCSE/A levels and, to get that it needs to be part and parcel of his way of working from as soon as possible.


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 Post subject: Re: CP, EP and Irlin.
PostPosted: Thu Oct 24, 2019 11:59 am 
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Joined: Tue Oct 23, 2018 11:24 am
Posts: 12
Thank you for your replies.

We will work to get things in place once we get the EP report, fortunately dc passed the exam and we don’t have to worry about whether to appeal or not.
We haven’t told them the news yet, due to dc’s bestie sleeping over who unfortunately hasn’t passed.


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