Parent Representative for Children with Special Needs

sarahlucy_2

Hello

Advice and thoughts please: I have two children with special and complex needs (aged 3 and 6) who are both at the same mainstream school. I have found locally that our parent partnership service is completely overwhelmed. If you contact them you simply get an answerphone message and no one gets back to you. The school offer some support through the SENCO etc... but really I have felt from when my children started school quite lonely and isolated. It is difficult to socialise with other parents as I am often not there at drop off/pick up time due to their medical needs. Also I find that my children are never invited to parties/around others homes. Not to mention all the other associated struggles that you go through Statementing, benefits, getting professionals involved etc...

I recently joined the class representatives at school and decided to speak up on the way I was feeling. The feedback I got back was that often other parents felt awkward to approach you when you had children with special needs. Since i have spoken up both of my kids have been invited to parties and out socially etc... Prior to this I was completely ignored even though I constantly approached the other parents and said hello etc..

This got me thinking though that it would be a good idea to have a parent rep at school to help other parents whose children have special needs. A support group to look at all the issues encountered and help with integration and socialising etc...

Here is my problem though - would you want to be part of that group if you had children with special needs? What do you think should be offered? Do you think it would be a bigger barrier to others??
Would love to know your feedback?? Will also post on the families forum but would love to know the feelings of all parents with and without children with special needs - or even if there are any initiatives running at your school that work well.

many thanks

SingleSue

Over the years I have felt isolated with my children, partly due to other parents being scared and or disgusted with especially middle sons behaviour and partly due to my own embarrasment about their behaviour.

My boys were diagnosed quite late (both were 5 but after many years of being told possible and probable) as a result, I do not belong or go to any groups to do with special needs (I don't even join in the autism discussion thread on here) as part of me still feels like an outsider as we didn't have the help of the pre school groups for autism where a lot of these bonds are formed. This was coupled with the extreme aggression and violence from my middle son making going to these things difficult/embarrassing to go to.

However, since my middle son started at high school, I have joined a parents focus group...not for special needs but for general student/school matters and have been able to suggest improvements for those children who have differing needs or to advise of any difficulties that could be seen in differing need children to any proposed suggestions by the school authorities.

These have been taken on board and slight tweaks made to proposals as through me, they are better able to understand the ramifications behind changes.

I'm still not sure on joining groups specifically for special needs because that little niggling feeling of not deserving it is still there plus due to my experience when my boys went to a special needs nursery where the parents played the "my child is worse than your one!" game which obviously, because my children did not have a formal diagnosis, made me feel pretty crappy.

shykins

single sue i just had to comment on your post as u said exactly how i feel.

i rarely even mention the fact my son is ADHD even on here - he wasnt diagnosed til this year (13) and its been very isolating but when u go to these groups (there are VERY few here in a rural community) i feel i dont deserve to be there as my son never seems as bad as others and a lot of parents do play "my child is worse" thing. so glad someone put in words how i feel so i know its not just me. thankyou

YORKSHIRELASS

Hi Sarahlucy, I personally think its a brilliant idea and would welcome that sort of group at my school. There is still a lot of stigma attached to special needs and yet it covers such a wide range of issues. My son actually looks and behaves "normally" despite being very poorly, and that brings its own challenges. I guess your first task would be to decide what the group wanted to achieve, is it just getting parents (and maybe children) together to support each other, is it addressing problems in school, is it helping people to access outside help, or maybe a combination of these.

I agree with the isolation that having a child with special needs brings, and I also agree with Singlesue. There is a local charity who do fantastic work with disabled kids in our area. We have been invited to join but I feel reluctant, mainly because I would feel guilty using their resources when I dont really see our child as being disabled.