A little insight into autism

A Guest post by Paul Larsen

(Written by my wife Christina)

Life with John and autism is such a roller coaster of emotions and can make you cry sad tears and happy tears almost at the same time. 

Yesterday I saw a boy who used to be in Johns nursery class, walking along wearing his greenwood academy uniform and it reminded me of all the things that John is missing out on at this stage of his life. It made me sad because I wish I could give John all the experiences in life that a 12 year old should have…. Having friends… Going to birthday parties… Fancying girls… Telling him that he has to work hard at school, so he can do well in exams, to give him the best start in life. Him not having this life makes me cry sad tears. 

Then we have a day like today, where we hear John speaking so beautifully on the radio and we celebrate the fact that he is even able to do this, as he was non-verbal  until he was about 6. I then think about him doing the solo piece at the prize giving service at his school and remember how much I was bursting with pride at watching my special boy perform in front of all those people. I think of him i-messaging me from his iPad, to tell me that he wanted Pizza Hut, instead of a McDonald’s on a Friday all these small accomplishments are massive to both John and us his family and that makes me cry happy tears .

Although I wish I could give John the life that any parent would want for their child. I am thankful and blessed that I was chosen to be Johns mum, because who knew that he is teaching me more about life than I could have ever taught him? 

I love you with every beat of my heart Son.  Mumxxx 

I hope you liked my wife’s little story about our wonderful boy, it’s just a minuscule insight into the stresses and strains of being a parent or carer of a disabled child. John has classic autism and will need 24 hour care for the rest of his life.

There are many many people with similar and more heart wrenching stories to tell in this country of ours and that’s without the added stresses of Tory austerity which seems to have brought with it a vilification and negative agenda against the disabled the poor and the sick.

Coping with disability or caring for someone with a disability brings with it many battles, some of these you win and some you lose we still need to be hopeful and try and stay positive. Nowadays that’s not so easy to do, I really can’t put into words the worry or gut wrenching fear I have for my sons future as services already under extreme pressure will have to endure further cuts.

The cuts to social services mean that care which would normally be provided might not be or it could be drastically reduced and could take years to be adequate enough for the people who need them.

We haven’t used any services up till now but will in the future as we get older and John becomes/craves more independence.

What if we aren’t there to fight my sons battles then who will? In a small way he’s lucky we still have our health and at the moment can care for his needs, organise his life or fight his corner but what about the people who don’t have what he has? What happens to them in the big wide world of Tory austerity? The answer isn’t a happy one.

17 comments on “A little insight into autism

  1. Thank you Christina and Paul – a beautiful, mindful posting. My very best wishes to you and your family, hoping you always have more happy tears than sad. X

  2. macart763 says:

    This is why we do what we do.

    Thank you for a timely reminder Paul and Christina.

  3. […] A little insight into autism […]

  4. mogabee says:

    Thanks Christina and Paul.

  5. hektorsmum says:

    Thank you Christina and Paul and not forgetting John. I have had the experience of two families who as they say, if their brown paper bags were put in the circle I would ensure that I would get my own back. One was a workmate who had one child, Ian was born with Cerebral Palsy, he never really grew much and he never talked, but Ian loved music. His Mum had Arthritis, badly so Dad was main carer for both. His Dad worked hard and every penny he made went into making the house fit for his son when he was no longer there. My Cousin Colleen has twin boys, one suffering severely from Autism. He was not at home last I heard, but knowing how close so many twins are it must be hell. In saying that I know that Ian brought much joy into his parents lives through his love of music, much more than misery and I am sure my cousin might have been happier with her two sons together Mother Nature seems to know which family can bear the burden. I hate those who would make life harder and certainly for those whose lives are hard enough.

  6. Steve Asaneilean says:

    Thanks for this. Short but incredibly moving.

    As Macart says this for me was what Yes was all about.

    I campaigned hard for a Yes vote but for me that was campaigning for a fair, just and equal society – “all of us first” as Common Weal would have it.

    Unless and until we live in a society where everyone is valued, everyone is concerned for the problems and needs of everyone else, and everyone seeks to put others before themselves then we have no right to call ourselves a society far less a country.

    No individual or family should ever have to worry that their country will not look after them now or in the future. And no individual or family should ever feel they have the right to opt out for contributing whatever they can afford or are able to contribute.

    What the Tories are perpetuating is not austerity – it’s shame; it’s a war of attrition against those who need most and can give least; it’s a demonising of those who have next to nothing accompanied by a lionisation of those who have more than everything.

    Yet millions still vote for them. Makes me sad.

  7. ruththetruth says:

    I Have two children now 22 and 18 years of age. Both are doing great contact me if you would like some tips. Our children never once were invited to parties, proms or had friends so I understand you.

  8. Maggie Myles says:

    Thank you so much for that great article.

  9. Maureen says:

    Thankyou Christina and Paul. Having Just retired after many years looking after young people with Autism and learning disabilities i can certainly understand your fears for the future. Macart speaks for many people. My very best wishes to you both and to John xxx

  10. Juteman says:

    A moving post, thank you. It made me want control of my own country, to be in the hands of the folk that live here, even more, if that is possible.
    Society should be judged on how it looks after its more disadvantaged citizens, and this UK State fails miserably.

    • Iain says:

      Regards to John from all – sounds like a real character. There are more than enough like-minded people and more than a few MPs out there to ensure a better society for us all.

      ..Well said J man. … “Society should be judged on how it looks after its more disadvantaged citizens” ….hmm….the guiding Principle for a written Constitution.

  11. Helen Mills says:

    You are correct Steve. The Westminster government is waging economic warfare on the poor, the disabled and the most disadvantaged. They do this , not out of a need for austerity measures but for an ideologically driven agenda designed to shrink the state . What we will be left with is an even more, survival of the fittest,beggar thy neighbour, me first society. For those of us who have friends and relatives with complex needs ( I have a nephew with severe cerebral palsy) this is an unbearable worry. For me too , independence was about much more than being better or worse off by a few hundred pounds, it was about creating a society that we would be proud to be a part of: one that actually gave a damn about one another and most importantly for the weakest among us. I am not giving up on this hope and will continue to fight for this

  12. Lollysmum says:

    Thank you for a wonderful article-would Christina & Paul or WGD mind if I stole it?

    I run a Carers Centre & would like to use it in our newsletter,with your permission, which goes out to 2,000 carers & 500 organisations/professionals.

    A huge part of my work involves educating people (particularly social workers) about the impact disability has on families & carers. This guest article does just that & I defy anyone not to be moved by it. Thank you to Christina & Paul for writing it & to Paul(WGD) for publishing it.

  13. jdman says:

    It was a true privilege to be part of your wonderful family for that short time while you and Christine shared your most intimate joys and fears and I sincerely hope we can share again in your joy when you son achieves his goals , you are us and we are you.

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