A Statement?

libismum

i am really sorry if this is a long post but i am desparate for some perspective and advice from parents who understand.
Our daughter Is five, in the reception class of our local village primary school and has a diagnosis of spastic diplegia, femoral and tibial anteversion, she has some difficulty with tolerating textures and has choked in school on a few occasions, she wears AFo's and a lycra suit. she uses a wheel chair to ride to school and home ( fatigue is a real issue!) she requires her wheel chair for class visits etc. she has R82 seating in school and requires support to adjust the height and secure lap straps. she has difficulty with toileting and requires support to get on and off the toilet... it would appear she has not bladder or bowel sensation but can be kept dry and clean by being toileted frequently. she attended the local playgroup with 1:1 support and the LEA has provided support through Medical banded funding since she started school.
she has recently been assessed by the Educational Psychologist who has assessed her cognitive development as being on the 96th percentile and has recommended formal assessment for a statement.
I would really like to hear from anyone who has been through the process , we are keen that staff will be aware of her needs and what she requires but are feeling a little overwhelmed at the moment

ZoeD

Hi I'm zoe,

I'm 13 and I have cp and I also went to the local village school and had 1:1 support I have a statement and that really helped me through and get the help I needed I now go to secondary school and still have1:1 support and a statement

libismum

Thank you Zoe it is great to get some advice from someone who knows how Libi might feel now and in the future. glad you found it helpful, hope she will too .

kazian

hiya ,my name is karen and i have a 7 year old little boy who has spastic dipligia cp ,he has been statemanted since the age of 3 and attends a special school,he gets reviewed once a year to ensure he is in the right place in these meetings you can have anyone attend proffessionals etc and be involved too which is great ,i usually meet with people at his school ,so we can discuss if there are any concerns.if you feel your daughter would benefit from being statmented fight for it i know some people who have had to fight for their children to be statmented but i hope you get what you need and if i can be of any more help i will do my best .take care .karen

fox111

Liibismum - hi i am sarah my son has exactly the same as ur daughter except the textile, choking

i am going through exactly the same as you at the moment i feel your frastration

jack has mild spastic depliagia and periventricular leukomalacia

he has also suffered reduced muscle tone in upper body and ankles

he scissors when walking/running and suffers pains in his arms as well as his hips and legs now

jack goes to mainstream school he also has a measured chair and box to support his feet, core muscles

he suffers tremendous fatigue his has a rest period in the afternoons infront the tv, he now finds writing very difficult and teacher write while jack dictates to her

although jack is above average menatlly the fatigue has caused tremendous complications now he is mentally and physically exausted he cannot complete work on time

i cannot fault jacks school they have given us so much support but again struggling getting a statement, as well as struggling getting an OT to assess our house so jack and i are seriously frastrated

we should keep in touch we maybe able to pass info onto eachother

(email address removed to comply with forum rules)

libismum

Hi there your young man sounds determined and wonderful just like our little girl. thanks for taking time to reply its great to know that others face the same challenges that she does. We received her Draft Statement last week, we have met with her school to discuss their perspective and wether they feel it will fully meet her needs in school. I have to say that i was very pleasantly surprised as the statement takes into account the support she needs with fatigue, and emotional well being as well as her requirement for support to reach her academic potential. there are a few places where we would like the wording changed so we have requested this and are now waiting for the LEA to resond.
During the meeting with her Headteacher and SENCO it was pointed out to us that Libi was continuing to struggle with the frustration of writing particularly as she became more fatigued towards the end of the week and the end of the half term. It was decided that the school would request an IT assessment ( through the Education department via OT I believe). and in the mean time she will start touch typing sessions so that she will have skills that she can use as she gets older- less frustrating than handwriting. school are keen that the LEA provide her with a lap top or I pad and that she has the opportunity to become independent with the technology whilst she is still in primary school before she transfers to senconary ( a long way off as she is only 6).
Statementing seemed like such an extreme and complicated thing to do when the process was initiated- actually it has proved to be like opening a door into a more inclusive world for Libi................... and long may it continue. we know there will be struggles ahead but a statement was the way forward for our little girl.x x x x x xx