I feel I am not normal because I don't live a normal life. My DS has severe physical and learning disabilities, daily I am reminded that we live in an environment and culture that is really not designed for him.
Example. My DS can't get himself around safely, when I am out with him I push him in a wheelchair, because of his learning difficulties he can't get himself around. It is physically strenuous to push him especially uphil when the pavement is uneven. Feel the shock my DS feels when we hit a rut in the pavement which grinds to a halt - it hurts my hands too.
It is much easier to push DS on the road as it is smoother and designed for wheels - but we can't use that safely either, we get honked at & have to move back onto the uneven pavement.
Another example. I am trying to open a bank account for DS, as he has just turned 18 I think as an adult he should have access to his own money (which we have been saving for him for years) but as a person with severe learning difficulties he needs protection.
How to reconcile this? I want a bespoke bank account which is set up with his needs in mind. But I have approached several banks and it seems that accommodating him isn't so straightforward. Has this situation never occurred before, is it really so outlandish?
Example 3. DS has never been able to use the train station in his home town where he has lived all his life, because there were no lifts to the platforms. The station has now been rebuilt and as part of that, lifts are being installed. The station has been pronounced 'open' but the lifts aren't working yet so to us it isn't open. I complained to the effect that 'if a place isn't open for the disabled, it is effectively isn't open so you have no business claiming that it is'. My complaint was ignored of course.
Where the emotional diarrhoea kicks in: here. I am so so tired of being ignored. I feel it is hard for anyone to understand where I am coming from, how hard this all is. I feel really insignificant; I don't know what normal is but I am not it, and I feel emotional upset at knowing my face doesn't fit. Because my life is not normal and the pressures I face are just overwhelming, what I have to deal with just takes my breath away. Also, I feel stifled as if nobody is interested in what I have to say.
I am tired of suffering and worrying about my DS future. My DS will have as good a life as his country is willing to give him. I have to do what I need to do for my DS and I need have some critical distance from my emotional upsets. I wish I could know it would be OK.