My daughter is 15 years old and a full time wheelchair user who is cognitively unaffected and very academically bright. She has some speech difficulties but can talk and goes to our local mainstream comp as the only wheelchair user alongside over 2500 other kids. She is doing her gcses this year which is adding to her stress of school and friendships. She has been through so much in her life - constant hospital stays and recently a big spinal op where we nearly lost her. As always I'm trying to support her but as she gets older I find that I feel more overwhelmed and under equipped to advise her on the complexity of her feelings about her own disability and how to navigate friendships and her upcoming adult life. When she was little it seemed easier as I could sort things and shield her from the world . I can't help her make lasting friendships or make it better when she doesn't get invited. Friendships have always been tricky and her (and my)biggest heartbreak. She is very bright outgoing and great company but alongside the difficulties of being a wheelchair user, her speech can be tricky until your used to her.
Alongside caring for her, I am supporting her emotionally and also constantly trying to find ways to occupy her and her younger sister - who I think is more affected by this than I'd like to admit. I know this is my job and I love both my children dearly. I do have a partner but we have no real life outside of the children and never go out or do anything without them as we have no childcare. I recently feel very overwhelmed by it all and totally alone as her dad doesn't really get involved in any emotional support. I stopped work last year to care for her when she had her op and also lost my mum who was a massive support. Sometimes I feel like we just don't fit anywhere as she is physically disabled but mentally just like any regular teen. Im not sure if this is appropriate or what im looking for really . Any advice from any parents would be really welcome. Thanks .