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Discussion in 'Personal' started by BelleDuJour, Nov 2, 2010.
you are like a dog with a bone !
Should I take that as a compliment?
my post seems to have been merged with doglover's post? for the avoidance of doubt, mine is the bottom paragraph about my daughter with cri-du-chat syndrome
No Hettys, I wouldn't change it. I might have preferred my children did not have to deal with all this in the first place, but it is the hand we have been dealt and I wouldn't now wave a magic wand to change it.
They are the children I love and adore - why would I change them?
It is not PC nonsense. Getting to a place where I am comfortable with what we have been dealt, has taken a very long time actually. It has taken time to be able to see past the Asperger Syndrome and enjoy the girls for what they are, and sometimes it continues to be very hard to see past the Asperger Syndrome.
But how could I wish to change it. The Asperger Syndrome is part of who and what they are. Without it, I don't know what they would be.
Who is to say that if you took the Autism away, from the children Belle is teaching, they wouldn't still have severe learning difficulties? Who is to say if you took the severe learning difficulties away, they wouldn't have autism?
To cry for what could have been, makes the child's life as it is, seem less worthwhile. That is not fair and it doesn't fo the individual child justice.
Don't assume to tell me that I should be ashamed of not wanting to wave a magic wand to change my children. There is a huge difference between, at times, wishing things could be easier for them or less stressful, and actually wanting to wave a magic wand and change who and what they are.
I am not judging you for wanting to change your situation, in turn do not judge me, for valuing my children as the people they are.
I must agree with DL on this. Our lad is our lad. Part of what he is is his autism.I wouldn't change him for the world.
I can understand Hettys' concern about the future of her(?) child if they are incapable of living an independent life.
Absolutely Sideshow, and I know several families in the same situation, and it is a horrible situation. I am thankful in many ways, that although my children will have to have much help and support in adult life, they will be able to lead relatively "normal" lives.
It won't be easy for them, and it has been a bit of a battle to get the support now, that will enable them to be more independent in later life.
As I said, I am not judging Hetty for feeling the way she does. I can fully understand her concerns.
I am with Hetty. I adore my children but two of them have a condition - (one diagnosed at 11 months, the other at five years of age) which impacts on their life considerably.
I felt like my darling children had almost been stolen from me. Life took on a whole new realm...a worrying realm.
Just as they are they are wonderful, but if I could take this away from them so they could lead entirely 'normal' lives and (selfishly) save me from the constant worrying I do about them, I'd grab that magic wand with both hands.
I want the best from them and I daren't even think too much about their futures because it upsets me so much. I live for the day.
It is not patronising in the least to think about the impediments to a full life that some children have.
Of course all children with 'conditions' are loved just as they are. After all there is absolutely nothing we can do to change the way they are except stand by them, learn how to handle their conditions and ensure life ticks by as best it can.
Magic wand? I'd grab it in a heart-beat.
Hettys: "and you wouldn't change all this if you had a magic wand??!! How selfish of you. I have a child with cri-du-chat symdrome. She has SLD, Self-injurious behaviour, autistic behaviours, will never live an independent life, will always be dependent on the goodwill of others for her care and when I am too old to care for her I will have to have faith in others to be kind, loving and not to abuse, neglect and ignore her. I fear for her future. I would rather she died before me. I wouldn't think twice if someone gave me that wand. enough of this PC nonsense."
You deserve a bloody medal, you really do. And Arched Eyebrow. I'm weeping for you and your child, and if that offends anyone then I actually don't care.
Just because I wouldn't change them, doesn't mean that you don't worry about the future, or wish that they didn't have to cope with the things they have to cope with.
But their Apsergers and the other condition they have, is part and parcel of who they are.
If I had known before they were born and could have changed it, that may have been different. I wouldn't change who and what they are now for the world.
If they had a terminal condition or a severe physical disability, I may think that differently.
I most definitely wouldn't want an educational or medical professional crying for what they could have been.
Doglover, I do respect your feelings, don't get me wromg. I have several friends with children who have autism and Aspergers and I know how much their personalities are shaped by the symptoms these conditions cause so I can see how it is difficult to imagine your children any other way. I cannot imagine my 15 year old daughter going off into town with her friends, spending hours on her mobile/pc/ipod, wanting to dye her hear or wear inappropriate clothing but oh how I wish she were able to do all these things, not for me but for her. As these children get older their quality of life deteriorates. She's no longer a cute little girl to society, now she's awkward, something to be stared at or avoided when she wants to say hello and tell you how old she is and that it's her birthday soon.
The only thing that I am grateful for is that she is unaware of how different she is and she thinks everyone is her friend and I certainly don't tell her otherwise. I love my daughter more than words can express but I could handle a personality change to give her all the life chances and experiences that we take for granted.
I should add to all this that I have a wonderful husband, an amazing 11 year old son who is just incredible with his "big" sister and a very happy disposition so please don't feel sorry for me but you can feel sad for my darling daughter because it is sad. She has changed my life completely, I know now what's important, and I have met some incredible people because of her.
There is absolutely nothing wrong with the way you feel, Hetty. I can completey understand the worries you have, as a parent, and I completelyunderstand why you would change the situation they could.
It is a completely hypothetical situation however, and I don't know that I would want to change my chidlren as I know and love them to something else. I wouldn't want to have not had the very unique experience of loving my children, exactly as they are.
In any case, the objection I had in the first place, was the post made by the OP where she said she cried for what could have been, for the children she was teaching.
I personally find that rather demeans the children they are. These children have difficulties and have to struggle, but it doesn't make their lives as they are any less precious or important as anyone else's. It doesn't make them any less capable of being fulfilled or happy, with the right support and help.
I can understand her crying for the stress, frustration etc they have to endure, but not for what they could have been.
I doubt you would want anyone feeling sorry for you Hetty, any more than I would want people to feel sorry for me.
I can feel sad for your daughter, and there are many times I feel sad for my own children, when life appears to be so difficult for them.
I don't feel sad for what they could have been though, and that is the point I am trying to make. Does that make any sense?
I agree that as a professional, crying is not appropraite at all. I recall many years ago when I was doing some voluntary work at a special school for children with physical difficulites, I was invited to watch their nativity play. It was extremely moving and I had to fight back my tears but when I looked at those children, they were having the time of their lives and I realised that crying was absolutely inappropriate. They were happy, excited, proud of their acting and their costumes. I learned a very important lesson that day.
It does make sense. I remember once someone asking me if I mourned for the child I should have had and I took great offence at that. My daughter has a massive personality and I agree that it is almost impossible to imagine her any other way and I can see that some might feel guilty to wish away their children's problems because in a sense you are "wishing" the child away but I really don't mean that when I say I would grab that wand with both hands.
What age is your daughter, Hettys? I have read a little about Cri du Chat Syndrome, but admit to not being terribly well informed about it.
I know you don't mean you would wish your child away, Hettys.
Having a child with a disability brings with it a variety of emotions, that can be very difficult to understand or explain to someone else - even someone else in a similar position.
She is 15, 16 in December. She is pretty amazing and has surpassed everyones expectations including her consultant. CDC is a chromsome abnormality, deletion of no.5 and like a lot of these syndromes the impact varys tremendously. In a way, we are lucky because she has wonderful social skills and is very loving with a wacky sense of humour but the challenging behaviour is very wearing and upsetting and seems to get worse as she gets older. You sound like a fantastic parent and as you say if these children get the right support and love then the sky's the limit in terms of helping them reach their potential. I just wish the clock would stop now, because I know that life will only get tougher as my daughter reaches adulthood.