Help me !!!!!!

I came here tonight for something else, caught your message and had to respond.

I work with youngsters on the ASD spectrum and see something of what they go through.  Unfortunately they tend not to know what I have been through and what helps me, often if not always, to understand.

Almost 30 years ago my first wife gave birth to a daughter whose handicaps, discovered only in the first few weeks of her life, were almost beyond description.  She was blind, epileptic, with a fitting rate at times of 100 fits to the minute, would never walk, talk or do anything for herself, had severe cerebral palsy and more besides. She was also the most beautiful human being I have ever known.

In the four and a half years of her difficult, hugely demanding life, whilst faced with the prospect of changing her nappies into her adulthood, of cleaning up day after day for decades the food she would regurgitate after hours of dreadfully slow feeding, there were times when I got mad, times when I thought horrible things.  If I didn't say them much it was probably because I knew she was totally uncomprehending, so it was a waste of time.

At times I hated myself.

The truth is, though, that the hate I expressed - and have heard others admit to expressing - was not of her.  It is the condition we hate, the condition we want to shout at, the gross, grotesque unfairness of a life so very different from our peers, so very much not understood by those who haven't experienced it.  It is the judgement of others, the so-called professionals sometimes, the man and woman in the street, those who tell us they will pray for us and expect our gratitude when we'd give so much more if they'd volunteer just the occasional cup of tea.

It's the bereavement first experienced when you discover your child is not quite what you expected them to be, is something that the nurses and midwives and doctors never warned you that it might be, and it's the endless, remorseless pursuit of justice and fairness for your child, for any siblings they may have and for yourselves.

A bad mother would not have asked the question.  The bad mother is absolutely sure she's the most perfect mother in the world.

You love your son.  It would hurt so much less if you didn't.  And it's probably not easy to make it clear to him how much you love him.  You are having a tough, awful, horrible time which, for me, was like hanging onto a cliff face by my fingertips, in the dark, in the rain, screaming a scream that no-one else ever heard but which I still remember and still aches in my chest 22 years after my beloved's death.

Forgive yourself.  Love yourself.  You are entitled to.  Do the best, then, that you can, just as you have been doing.

God has long been a stranger to me - a very bad, very old joke.  'Good' Bless you, lady.  You deserve it.

I came here tonight for something else, caught your message and had to respond.

I work with youngsters on the ASD spectrum and see something of what they go through.  Unfortunately they tend not to know what I have been through and what helps me, often if not always, to understand.

Almost 30 years ago my first wife gave birth to a daughter whose handicaps, discovered only in the first few weeks of her life, were almost beyond description.  She was blind, epileptic, with a fitting rate at times of 100 fits to the minute, would never walk, talk or do anything for herself, had severe cerebral palsy and more besides. She was also the most beautiful human being I have ever known.

In the four and a half years of her difficult, hugely demanding life, whilst faced with the prospect of changing her nappies into her adulthood, of cleaning up day after day for decades the food she would regurgitate after hours of dreadfully slow feeding, there were times when I got mad, times when I thought horrible things.  If I didn't say them much it was probably because I knew she was totally uncomprehending, so it was a waste of time.

At times I hated myself.

The truth is, though, that the hate I expressed - and have heard others admit to expressing - was not of her.  It is the condition we hate, the condition we want to shout at, the gross, grotesque unfairness of a life so very different from our peers, so very much not understood by those who haven't experienced it.  It is the judgement of others, the so-called professionals sometimes, the man and woman in the street, those who tell us they will pray for us and expect our gratitude when we'd give so much more if they'd volunteer just the occasional cup of tea.

It's the bereavement first experienced when you discover your child is not quite what you expected them to be, is something that the nurses and midwives and doctors never warned you that it might be, and it's the endless, remorseless pursuit of justice and fairness for your child, for any siblings they may have and for yourselves.

A bad mother would not have asked the question.  The bad mother is absolutely sure she's the most perfect mother in the world.

You love your son.  It would hurt so much less if you didn't.  And it's probably not easy to make it clear to him how much you love him.  You are having a tough, awful, horrible time which, for me, was like hanging onto a cliff face by my fingertips, in the dark, in the rain, screaming a scream that no-one else ever heard but which I still remember and still aches in my chest 22 years after my beloved's death.

Forgive yourself.  Love yourself.  You are entitled to.  Do the best, then, that you can, just as you have been doing.

God has long been a stranger to me - a very bad, very old joke.  'Good' Bless you, lady.  You deserve it.