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support for children with chronic health problems at school

(5 Posts)
elliejjtiny Mon 21-Dec-15 16:25:54

DS4 has hydrocephalus, immature brain and a repaired cleft lip and palate (with all the usual hearing/speech issues that go with it). He has had 9 operations for various things so far with another 2-4 planned for next year. He's only 2 so very early to be thinking about this but I keep worrying about the support (or lack of support) he's going to get at school.

Most of his problems are health related. People say he isn't that bad because he "only" has 2 therapists (OT and SALT) but he has 6 consultants (general paed, neurosurgeon, ENT, eye dr, genetics and plastic surgeon) as well. I'm worried he will slip through the net as most of his problems are related to health rather than education.

He is currently at a SN preschool 1 morning a week where he and most of the other children there get a ratio of 1 adult to 2 children. They are going to do a development assessment on him next term and the senco from my older sons school is coming to see him at preschool in the summer term. So it's all being organised but I keep thinking that they are going to say he's not going to get any help.

Thing is, if I was asked why I wanted him to get extra help it would be because I want him to be wrapped in cotton wool at school like I do at home blush and there's no way the school would employ a 1-to-1 for that. I keep worrying that if he has an emergency with his shunt then in a class of 30 the teacher wont notice and his brain will get more damaged than it already is. Although one of the staff at preschool reminded me that a malfunction with the shunt will start of very gradually and even in a class of 100 the teacher would notice if he got to the emergency stage as he would be puking and/or having seizures. Even if they didn't understand why, they'd know they would need to contact me quickly.

Kanga59 Tue 29-Dec-15 22:40:35

No advice I'm afraid but just want to say I'm jn a similar boat so will be watching thread with interest!

I'd recommend self referring for an EYSENIT if you don't already have one

EyeoftheStorm Tue 29-Dec-15 22:58:38

DS2 has hydrocephalus and his shunt was put in at 7 months. He's now 6.

Your DS is still very young. I think it gets easier as they get older and nothing goes wrong with the shunt. It's easier to put it to the back of your mind.

I make an appointment with his teacher at the beginning of every school year and talk through signs of a shunt problem. I think it would be very strange for us not to notice a shunt problem before his teacher did.

In the first term of reception, DS2 tripped over his own feet and broke his arm. The first thing his teacher said when I got to school was: he didn't bang his head. They understood my priorities.

Peedyex Wed 30-Dec-15 00:55:10

I don't know much about preschool but there is a lot of help available for children with medical conditions at school - ie statutory school age. There is Government advice for schools that was updated earlier this month:

www.gov.uk/government/publications/supporting-pupils-at-school-with-medical-conditions--3

One of the things this will suggest is ensuring the school has a care plan. I would suggest you arrange to meet with the appropriate person at school (SENDCo and or Head, in addition to the class teacher (in case of staff absence)) and use the completion of the care plan as a structure for the meeting. A sample care plan is available on the site above in the templates.

Should your child be absent from school for long periods due to illness/ops (not self limiting illness such as measles - for any others reading this!) there is guidance for local authorities to make provision after 15 days - the third "document" on the site above gives links to that information "Ensuring a good education for children who cannot attend school because of health needs" in addition to other useful links.

Depending on the school and LA, knowledge of their responsibilities can vary hugely. I would advise trying to talk them through it - it will be as scary to them as it was to you on day one - forgive their lack of experience, they are education professionals, not health professionals. The school nurse might be able to help or, if your Consultant Nurse is happy to visit the school, that could be arranged for a teacher training day - a little more interesting than curriculum reform!

Having said that, don't let them ignore their responsibilities. Give them a copy of the documents above to read before your meeting. Whilst the documents are guidance, they are statutory guidance and schools and LAs must take notice of them.

The next bit is harder to explain........

Most of the above applies to "sick children" as opposed to disabled. Obviously disabled children also have acute periods when they would be "sick". If there are long term issues then the school might apply for an EHCP - Education Health Care Plan. This is the equivalent of the old "Statement" of SEN. The assessments you wrote about above might lead to the preschool or school beginning this process as it applies 0-25. It would not be appropriate for me to advise on this, but the third "document" on the page above also links to the code of practice "Special educational needs and disability code of practice 0 to 25" - warning.....it is very, very long!

Hope this helps

Dipankrispaneven Mon 04-Jan-16 22:45:01

It's not just the school that applies for an EHC Plan, you can apply also. It might be worth talking to the SENCO about whether that would be appropriate at this stage.

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