Wednesday, 14 September 2011


I have two younger brothers.  Warren lives in Newcastle with his family and my youngest brother Jason lives in Wales.  This weekend is Jason's 43rd Birthday, he was coming to visit.  Nothing special in that, families get together all over the country for birthdays and celebrations.

Jason lives in a care village, he is severally autistic. I find the word autism has lost its true meaning in recent years, it has been so over used to  explain away many forms of behaviour.  Jason IS autistic, he cannot talk, he communicates through a series of noises and gestures.  He has to have a strict routine, he hates change of any kind, he is obsessive about his belongings and fixates on a couple of his possessions.  He is prone to fits of temper.  In the past these have been controlled with very strong drugs.  So much so that I was often shocked when he visited or we visited him.  He was often "zombie like" but we were told it was the only way to keep him calm and happy.

Why am I telling you this ?  

Imagine this situation .......  You have a child who was born with a condition, but to the outside world he was a beautiful, blonde haired, blue eyed boy.  People looked at him where ever you went and laughed at the noises he made and the hand gestures, the shaking of his arms and head.  The fits of temper, throwing himself on the floor.  Onlookers commenting "that child needs a good smack"  " that child is a retard"  " that child is mad, get him away from my children"  or just the silent looks of fear .

As he grew in age and size it became harder and harder for you to control him.  He smashed up his room, your home, he hurt his siblings.  You were a single mother struggling alone, no help, no family support.  One day he has an incident at his "special school"  he hurts another child.  He is taken away and locked in an adult ward of a mental hospital.  He is a child .   You fight the system, you get him out, home safe and all is well for a while.  Then one day you are out in your car with him, he leans across and grabs the steering wheel , you swerve off the road into a bush, the car is written off.  When you get home he throws the tv through the window. 

It's time, the authorities tell you, your family tells you, your friends tell you.  You cannot manage alone anymore.  He needs special care and attention.

Your heart breaks, you feel you have failed, you hand him over to the care authorities.....

You live everyday with guilt as a mother even when those around you tell you its for the best, he's in a good place.  He lives in a care village in Wales.  They understand about his needs.  Others there with similar conditions.  He gets hobbies, they take him horse riding, delivering newspapers, little jobs, glimpses of a "normal life".  Life ticks along, you visit, he visits you.  Always with two burly care workers to "take care of him"  incidents are rare now.  You get used to your blonde haired, blue eyed baby who has now grown into a man living away from you.  You have the chance of some kind of life for yourself, the guilt sits there on your shoulder every minute of every day.

This weekend Jason was coming to visit me for his birthday, my mother and step father are in New Zealand, They always have him to stay for his birthday but this year they had the amazing opportunity to go to the Rugby World Cup.  They left a few weeks ago and I promised I would take care of Jason and not to worry, go and enjoy it, all will be fine.

Jason had an incident, we are not sure of the facts but he ended up in hospital and is still there today.  My mother is beside herself in New Zealand and wants to come home.  I've tried to reassure her that I would take care of Jason and all will be well.

The guilt is back to mock you ......


  1. What a deeply moving piece, i can only begin to think what your mother is feeling from the other side of the world... I think as mothers we will always have some sort of guilt when it comes to our children, could we have done better? did we make the right choices for them?

    Hope your brother recovers well from his accident.

  2. Frankie, thank you so much for reading this and for taking the time to comment. It was really hard to write but I needed to show my mum I was doing "something" when she is so far away. xx

  3. This broke my heart, Karen. Words fail me.

    All I can say is we feel guilt when we are trying to do our best. Those who don't feel guilt have never tried because they just don't care.

    That's how I see it anyway.
    I'm not saying that feeling guilt is pleasant but I think it comes from a good / well intentioned place.

    In my work as a children's entertainer,I've come across quite a few children in the autistic spectrum and I found that puppets really work well with communication. I think that's because they have no visible emotions and a fixed expression that they're somehow perceived as safe?
    I don't know, not sure they'd work with adults, or if it would even be appropriate... but I thought I'd mention it.
    All the best.

  4. I could not read and post something. I have a disabled brother so I kind of know how it is. I really hope your brother recovers and your mum enjoys herself in New Zealand. Hope you keep us informed as to how your brother is doing x

  5. charliechinuk thank you so much for taking the time to comment. I really appreciate it. I am trying to get information about how he is at the moment. We know his face is damaged and he has had stitches and that there is a problem with his hip. xx

  6. Hoping he recovers very soon xx

  7. I am sat here in tears Karen. Life can be so hard with a disabled child. My neighbours when I lived at home growing up had no choice but to do this with their son. As he was to large for one person to handle. I remember him sitting in the main road and stopping traffic and the police were called, there were four Policemen trying to move this 12 year old boy. In the end he came off the road for me (I was 6 years old). I had a real connection with him and I missed him so when he went away, but he did really well and sadly passed away last year.

    What I am trying to say is that there is always going to be guilt, but these people that judge without walking a mile are not worth the thoughts.

    I hope you brother recovers and that you mum does what she feels she needs to do.

  8. what a moving post karen. hope it all comes right soon .... and what an amazing women your mum sounds!

  9. A moving piece. Couldn't read & run, so thought I'd leave a short comment. Hope your brother recovers ok.

  10. I can relate, as you know.

    The guilt is also haunting you. Can you visit him in the hospital? That might help both of you if you can.

    I know your mum will not settle now until she can come home, and will probably never, ever go away on his birthday again.

    It sounds like quite a severe incident. Let us know how he gets on.

  11. Jen, thank you so much for your comment, you understand our situation so well. Jason was just like your neighbours son.
    I fought many battles for him growing up with ignorant, spiteful people.
    Hugs for being such a wonderful friend xxx

  12. You really do feel guilt as a mother but for something like this it breaks your heart. I hope your brother is ok and gets out of hospital soon. I hope your mother can enjoy the rest of her time away and you are doing ok too hugs x

  13. Couldn't just read and run dearest friend, but you have me dumbstruck.
    Ordinary Kind words just seem so useless, it must be so very hard for your mum. Also must have been very hard for you growing up too. I send you both hugs, your mum should not feel in anyway guilty . But sadly "mum guilt " slithers inside us all and is unaware of logic or reason . Sometimes whatever we do is never enough , and that's the bit we have to live with . Thanku so much for sharing something so very personal, made me think differently about a lot of things today xxxx xxxxx

  14. Oh Karen. What a difficult post to write.

    I hope you are able to reassure you mum that he's going to be ok and she gets to enjoy (? that's probably not the right word) her holiday.

    They are very lucky to have you as such a caring daughter/sister.

    Hugs x

  15. Thank you all so much for your kind caring words. You will never know how much I appreciate you taking the time to support me xx

  16. I don't think we have anything to feel guilty about, and your parents certainly don't. We have the care and support systems available to give our children the best life they can have and if we hold onto them knowing we can't cope, we should then feel guilty.

    Giving Jason the chance to live a fulfilling life in this care village is the most generous aspect of the unconditional love we feel for our children.

    I hope he's okay.
    CJ xx

  17. Hey there Aunt, Sorry to hear about Jason, you will all do what you think is best for him. I think talking to the hospital as often as you can is the first step forward, ask for photo's and reports of his injuries so you have it all for peace of mind. Secondly keeping Mom informed, please try not to let her come back, easier said than done I know that...thinking of you, hugs and kisses x x x

  18. By the way Karen it is Deb not Russ xx

  19. That's a lovely blog Karen and so heartfelt without being over emotional. You put it all so well. It's very good of you to be there for Jason as well as manage your life too. The drive alone would be something that would put a lot of people off helping!
    No one needs to feel guilt. You have all done the best you could for many years. It is a very hard thing to live with and you have my best wishes. I hope Jason is ok and he gets to celebrate his birthday soon.

  20. Russ(Deb) WOW! Thank you for visiting the blog. It means so much to me that you took the time to comment.
    Update is there are no broken bones in his hip or leg, but he is refusing to walk, so they are keeping him in. I am just a little concerned about the fact that it appears he doesn't WANT to go back to the village : (
    Promise to try to get up to visit soon xx

  21. Oh Karen, how tough for you and your family. I do hope Jason is okay. Thinking of you x

  22. I've only just caught up with this. I'm am crying all over my keyboard - what an emotional post.

    Thinking of Jason and all of your family hun - going to hug my dear ones a little bit closer tonight.

    Sending you lots of love


  23. Thank you for taking the time to comment sweetie, its been a hell of a week. Waiting on consultant tomorrow now to see what next move is (Jason is refusing /unable to walk) . Also my Sister in law had emergency surgery to remove her bowel we are totally exhausted. xx

  24. Sandy, thank you for taking the time to comment, I really appreciate it xx



Related Posts with Thumbnails

google analytics