Friday, 20 April 2012

Wishing it wasn't so is pointless

Lots of debate has been generated following Louis Theroux's new documentary Extreme Love on autism last night.

I didn't watch it. I might do eventually but for now it's not for me, because when you live the live action version of a documentary 24 hours a day it's not as fascinating or as informative as it is for other people.

This is precisely why these programmes should be made (although with the caveat that I don't approve of disabled children participating without being totally assured of  their agreement) for one very good reason because hell really is other people.

Anyone who follows me on Twitter knows that we live with severe behavioural problems which can at times become overwhelming. This needs to be communicated because thousands of people have the same experiences we do and their family, friends, colleagues, bosses etc all need to know of the challenges so that they can make allowances.

Carers along with the disabled people they love and look after, need to be understood and helped without pity or charity but with compassion and understanding. Carers often lead very isolated lives. They lead lives containing little sleep, constant battles for services and financial help, fraying levels of patience and often mental health concerns.

Carers are not saints they're people just as flawed as any cross section of society so no quarter should be given there but they do face unimaginable challenges which would test unaffected people to the limit. That's a fact. Some carers are neglectful and abusive this is also a sad truth which needs alluding to but just like poorly performing  professionals  they make up the minority.

Some carers are over protective and refuse to let their children grow up. They too need to be recognised for their over protection is smothering for their disabled child and ultimately damaging to their own health and well being.

But above all I wish carers wouldn't wish their lives and their children to be different. Ironically this difference meaning wanting their children to be the same as others. Wishing your disabled children non-disabled means that you separate the disability from the person.  Children may acquire a disability or may be so from birth but the encouragement to grieve for the person you never knew is an odd way to counsel after diagnosis. Your child is disabled deal with that. It's hard enough to cope with everyting else that you have to do without paddling around in the *what if * pool. Hypothetical yearning is pointless. Your child needs your love unfettered by this fallacy.

If you spend your time consumed with thinking of your child differently you begin to place barriers in the way of advocating for them correctly. You search for normalising *cures* which are usually expensive and ineffectual. You become intolerant to their needs which are as real as any person and you place your wants and desires front and centre of your life at a time when you really are secondary in the scheme of things. You also lose sight of the beauty of life when external yearning for superficial conformity is removed. The view is clearer if you could only see for looking.

No child arrives with a book of instructions, no relationship is without pain or risk or loss. It's simply a matter of mitigating your sorrow at not being just like all of your friends with the realisation of how happy you can be if you let yourself.

I don't have a faith to comfort me , I get punched a lot, don't sleep much and worry to an Olympic gold medal winning standard, I've also had broken bones a rapidly diminishing social network and am a virtual prisoner in my own home. Would I like some help oh yes especially as with Emily refusing school and respite for 12 months I now have the added joy of being examined and appraised by The Local Education Authority and the worry of them deciding that Emily not attending, is somehow my fault. As though I was too busy in a crack den or at the bingo to bother.

This is the way it is. Wishing it wasn't so is pointless. It truly is extreme love but that's what mothers are supposed to do isn't it?


  1. As always perfectly put, honest and educating opinion. I remember getting my daughter's diagnosis, I was so relieved to have an answer, something I could research to be able to start to help her by better understanding what life was like through her eyes. I haven't watched the program either as like you mentioned why - we live the life, but yes it is good for people who don't to be able to get an idea of what life is like for a person with autism and their family. It is hard work, very hard work, but to me the hardest part has been having to fight to get services and benefits, which she rightly deserves and needs. I've had her in public schools, private schools and ended up home schooling for several years, which was a last resort, but the best decision.

    I fought not to put her in a special needs school when she was younger, I wanted her to be around "normal children" learning normal things and that was the best thing for her then. She will be 18 in a matter of days and is in her second year at a special needs school learning life skills and doing fantastic. She has grown so much and matured, has friends, goes to discos and parties, it is the best place for her now.

    Nicky nobody knows your daughter better than YOU, you are a very good mother and will make the right decisions for your daughter. I'm sorry that you are having to deal with the local authority, they haven't got a glue what it is like. If there is anything I can do to help in anyway please ask. You are all in my thoughts.xx

  2. Reading your Blog is like living in my world, the only difference is my son Lewis is Severely Disabled. When reading all his condition isn't good, but they don't know him, hes got a great sense of humour and a dirty laugh and attitude. He has a greater understanding what is happening around him, some people don't realise unfortunately they don't take my word because I haven't got letters after my name im his mother. Its so frustrating. Thank you for your Blog :-)

  3. Staff at high school could never understand why I didn't want to join the afterschool support club for parents living with with it day and night does not make you want to sit and chit chat with other parents about all the stresses, I was more interested in joining a club of mums/dads who had autism in their lives, but who wanted to escape it for a couple of hours :)

  4. I wouldn't watch the program for the same reasons you state above. I live with autism 24/7 and don't wish to have it rammed down my throat at 9pm in the evening by people I don't know. That's my time, well, I actually watched Doctor Who with my autistic daughter, but still. Programs don't show the whole picture though. They show the negative sides to the scenario, they rarely show how rewarding and how incredibly gratifying it is to have a child with a disability. It didn't change my life when I found out my daughter was autistic. It didn't change my life because I knew no different. And when people say they've grieved for the child they never had, it makes me pretty damn angry actually.

    Great post.
    CJ x

  5. I think the programme was more for people who didn't have an autistic member of the family.
    I really like hearing about other peoples lives with their kids. People don't understand the resentment that builds up between a parent and their child when ASD is involved.
    The book I work with is by an American psychotherapist called George T. Lynn. A lovely compassionate man with his own autistic child and talks quite casually about hating ones child sometimes.
    I think I'm over the worse with one of mine.The years of locking myself in the bathroom and banging my head against the radiator have long gone :)

  6. I really think your blog and the comments form the people who read it should be part of any training package for support workers. There's a fair bit of ignorance about how families work round children who have learning disabilities. I've come to see your blog as essential reading.

  7. Nicky,
    Candid post. Yes, totally agree that we need to accept our kids as they are: people first. The disability should never be allowed to define them. My faith in God keeps me going as I work with people who have disabilities. I really see the immense value in each person I meet. It is a challenge to walk alongside of one who is disabled, but, I have found it a blessed opportunity to learn just a bit more about life.

    Thank you for your post