I'd been feeling ok until last week, when my husband forwarded me an invite to his cousin's daughters two-year birthday party. I fell into a deep depression again, not helped by another email soon after which was putting a date in the diary for all my husband's family to get together before Christmas, since not everyone will be there on the day. That means three babies/toddlers will be there, and at the moment I see them as the 'ghosts' of the babies we thought we were having but never did. The pain is quite extraordinary. I told my husband that I really didn't want to go and he was ok with that, which relieved me. I hope I change my mind closer to the time, since I do realise I'm dividing him, not least the rest of the family, and it's not like I can make those children 'unexist'.
However, at the weekend, I read about the controversy that Ricky Gervais set off when he referred to 'mongs' - i.e. an insult to those with Down's Syndrome. He had a run-in with a lady called Nicola Clark, who is the mother of two girls with autism, who rightly took issue with his use of language. I'm now very alert to the lives of people with multiple children with disabilities, firstly because frankly, until my experiences, I didn't realise it could happen more than once. I started reading her columns in the Guardian Newspaper, and was drawn to one column where she discusses how she is reluctantly considering asking for one of her daughters, 14, to be taken into care, as neither she nor her husband can take much more of her violence and aggression. I started to read all the comments below her article, many of which are from people also facing a very tough time with their mentally disabled, but physically able, children.
Here, I reproduce one of the comments, which in my view is unbelievably harrowing:
However, at the weekend, I read about the controversy that Ricky Gervais set off when he referred to 'mongs' - i.e. an insult to those with Down's Syndrome. He had a run-in with a lady called Nicola Clark, who is the mother of two girls with autism, who rightly took issue with his use of language. I'm now very alert to the lives of people with multiple children with disabilities, firstly because frankly, until my experiences, I didn't realise it could happen more than once. I started reading her columns in the Guardian Newspaper, and was drawn to one column where she discusses how she is reluctantly considering asking for one of her daughters, 14, to be taken into care, as neither she nor her husband can take much more of her violence and aggression. I started to read all the comments below her article, many of which are from people also facing a very tough time with their mentally disabled, but physically able, children.
Here, I reproduce one of the comments, which in my view is unbelievably harrowing:
``Let me tell you what we have spent this morning doing so far. We have put up 3 enormous pads, with attractive owls, animals and numbers on them (wipe down tough plastic) on the walls of my son's bedroom because his headbutting has smashed and cracked the plaster right through to the lathes.
So we are constructing what is basically a semi-padded cell.
The endless round of biting, headbutting, kicking, scratching, slapping, punching screaming, and utter destruction of our house has just become normal.
Imprisonment in the house has become normal too, only going out for food. Supermaket trips can be a bit hit and miss with our dear little 'Destructinator'.
He's doubly incontinent, doesn't speak, but at last he's in Special School which is great, because the insanity of life stops for just a few hours a day during the week. School holidays become terrifying, and already I'm getting upset over the 6 week Summer holiday.
Nicola, you are not alone in your family struggle to live with this. People who live daily with this can really understand how it gets to a point where you sadly have to realise you can no longer go on, you are breaking, after finally living at breaking point for years.
I suggest you try residential care as an assessment placement for a few months. See how everyone gets on, so that you can keep your options open.
I'm so sorry that it's come to this for you, but I understand totally how it is, and understand how it's become impossible to carry on.''
I suppose I'm trying to get my heart to accept that our boys, if they'd turned out physically like their father, would have become 6ft4 and 14st of mentally disabled adult male, and that's not a great situation to be in.
If you have time, do read her article and the comments below - the link is here:
http://www.guardian.co.uk/commentisfree/2011/mar/31/daughter-care-vulnerable-disabled-people
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