Disability is a tricky thing; the world is not as accommodating as people think and that realisation hits hard when you’re the one on the outside looking in.
When my children were old enough for school I was excited for them to enjoy their school years as I enjoyed mine but my experience as a disabled parent was depressing to say the least. Everything that was available for parents was severely inaccessible and the fight to get access was just exhausting. The school became a battleground. I could see the difference in the experiences of my able-bodied counterparts and it made me very, very sad.
Time came when we removed our children from school (that’s a whole other story) and immediately our anxiety levels reduced and gave us much needed relief. The disappointment I felt was surprising given the difficult experiences we had with the Headteacher but I felt that I had let my children down.
I had deprived them of something fun. My disability had taken something away from us- again. I am not supposed to restrict my children- I’m supposed to give them opportunities to learn and grow and help them to blossom and shine.
Time and again I have created loss for my family while friends and relatives have surged ahead; calls/emails and invitations have become less and less frequent and suddenly the people I counted on, the ones I thought of as my support circle, were gone.
I get it, it’s sad and depressing and boring and monotonous to be around someone with no good news who needs so much help – like an albatross around your neck.