A huge response

Posted by Sarah on Feb 7, 2013 in Uncategorized |

My last post regarding parents who don’t have children on the spectrum, but seem to want them  has clearly struck a nerve in a lot of parents. I’m going to share some of the comments I got when I put the link on Facebook.

S said : Love it! Well said and good on you Sarah. I totally agree… it is so hard when other people don’t see what you see. Don’t feel what your child feels. Question your parenting skills…tell you to go home and learn to deal with your kids behaviour. Tell you that the kid is good looking so what are you talking about. xo
J said : Well said & needed to be!, there is few of them that try it on, perhaps if they spent a day in your shoes then they would know how much their pushing for labels hurt’s those children & families dealing with it on daily basis, before they pump parents for ideas or ways to put things they should step back & realize they are not hurting themselves yet the child in the middle or families whom are waiting for appointment that they took who’s children’s really do need it!, I know we’ve spend well over thousands to get our daughter the right diagnosis, the people whom attempt to try it on make me feel ill not for them but their child/children. This then quickly turns slightly to anger too for the child/children as a growing body such as child needs rest a diet to support a growing body & who’s parent love them regardless of a label the parent/parents seek of for their own gain, or to sit with a child with that condition & listen to their aspiration’s every night knowing they might not be able to reach them yet still supporting them to go for it. It’s every parents heartbreaking moment, yet to them it’s a validation a victory which it’s not. As parents we love our children regardless of what they may/may not have. We see just our children yet to some all you hear is oh this or oh that. Do they even have a clue as to how much even on a meek or mild side of the scale it hurts and burns to hear those words? To have relationships (family, friends, romantic) lives torn apart or to watch siblings go thru it too? Or the feeling of being so alone? I think not, its a gain for them but lie as they may time has funny way showing the truth as they will learn hopefully for the kids sakes the wake up & step up for their kids. 
R then joined the conversation and wrote  : They also forget the impact on their children’s future, what if them insisting on a label that isn’t there makes it so they can’t get the career they want when older like the police force or army, they forget or maybe don’t care that this label follows that child around for life. How could anyone want to watch their child miss out, be left out, struggle so much that they even say they want to die cos it’s too hard, I feel sick to know that there are people that want to pretend that’s what they live when they don’t, they might as well spit in the face of a true parent of a child with autism cos thats basically what their doing. I feel sorry for them that they feel they need it but quite frankly I would quite happily give up the health care card, the school funding, the knives to my throat, the yelling, the holes in every wall, the being unable to go anyway on family holidays, day outs, the break down of your relationship that suffers so much, the lack of sleep my god the list can go on, the fact they can’t even go to school, they can have that if I can pass it on and be left with a child that doesn’t do any of that, they can have it and see if they really want to live the life, I luv my son but I hate what Autism does to his life and mine and my other children. Well written Sarah and about time it was said.

I also had people writing in disbelief that people would actually do this but time and time again I have seen it with my own eyes. I got emails from readers who felt that they had to let me know how they felt.

M wrote :

It’s a catch 22
You didn’t have to prove to anyone your Beth is on the spectrum but now you have to live with the fact you didn’t have to
My Beth had to go to another specialist because sunshine hospital could not see autism . Funnily enough the second specialist couldn’t believe they did not see it straight away.
The only thing that keeps me sane  is , we know what our Beth’s need and that is all that matters because we are the ones that love them through thick and thin .
You are a great mum that is all that matters.
We live with our choices every day . Our Beth’s thrive because we are their mums.  Concentrate on what you can control . forget  about others who have no idea what it really is to be a mum of a special child!!!!!!
Absolutely M, that is what it’s all about, enjoying our kids for what they are.
C also wrote to me to tell me about her sons :

This is the first time that i have had the desire to contact you as i am so astounded that anyone could want,  let alone set up their kids to get a diagnosis. i have two boys on the spectrum; 1 a 4yo severe non verbal autistic boy with global delay and a 7 yr old with Aspergers and ADHD.( i have real issues with the attached conditions, but thats another story) Both my kids have major sensory issues that complicate their daily lives.
I, too, have occasions where i doubted myself in having my aspy boy formally diagnosed as i,too, don’t like labels and have had instances where people have not given him a go or chance because he has it.  (the predudice and uneducated of the world,) and we even had trouble getting him into primary school.
 
i have had people, too, question my reasons as he is smart or doesn’t look ASD ( oh boy thats my favourite) and like you, not once for his little brother. and yet when he comes out with a one liner or tells it how it is (political correctness, doesn’t exist here)is insensitive to someones situations, melts down over undies or socks/shoes. Wont walk into a social situation  Or will not forgive those that have the  broken social rules he has formalised. How quickly they forget and see him as a sulky rude boy.
 
On the overall  l am glad we have had the diagnosis, it has given me more patience and a different way of looking at things.( 8/10 meltdowns or arguments are Aspy related the other 2 are him being a 7 year old boy.# i just need to find the trigger*  I have better understanding of who he is and even who i am. I have believe that as he gets older and into his teens he will he a stronger sense of identity for it, know why he see’s the world and does  the things that he does. Know his weaknesses and have the tools to make a difference.
the extra assistance from the government, that doesn’t get you crap. Not enough for what they really need so why would anyone go thru the anguish for the token pennies.
 
As for your new friend i found that when you have a new diagnosis it consumes you and you cant help shout to the world but you learn to keep your own council and only when it truly matters (its in your aspy’s best interest) you say anything. And trust your own  judgement, because it is what we do as their parents not what others say that will make difference to the worlds the live in.
I even had my darling Daddy send me one of those lovely emails with pictures and sayings on them, saying his favourite (which was mine too) is “You’re too blessed to be stressed,” good words to live by.
Anyway, enough about that! I just thought it would be good to share how it affects other parents.
Beth’s having a good week this week, she’s enjoying going to school which is a miracle in itself. She’s been doing some really stupid things though which frustrate the hell out of me. She went to see Rise of the Guardians with her dad Paul on the weekend and has decided that she’s in love with Jack Frost. He is kind of cute! As I didn’t see the movie I don’t know much about him at all but she’s decided that she doesn’t fancy Ethan from Ice Age 4 anymore (just as well, don’t know how we’d fit a mammoth into the house) and wants Jack Frost instead. I of course am supposed to know all about him too. She keeps saying that she can change and be like him, that if she does what he did she can be a guardian too. The other night (just as well she repeated it to me) she was talking about kissing Jack Frost. He must have cold breath. She said they could put their cold breaths together when they kiss! Last night however I was not impressed. Beth went into the kitchen and was ages. It was about 10.30pm and I kept dropping off to sleep so I hadn’t noticed how long she was. She told me she had three glasses of water, then about five minutes later she complained of having a tummy ache. (Apparently Jack Frost drank three glasses of water). Next thing she’d projectile vomited all over the side of the bed, all over the floor and her magazines. Luckily they were old ones and could be chucked out. She knew it was her own fault as she kept apologizing. As a general rule I don’t like the word stupid but I told her it was a stupid thing to do and she agreed.
The other stupid thing she did was a few days ago when she stuck her finger into the cigarette lighter in the car. She knew she shouldn’t do it, she knew it was stupid yet she still did it. My Bill clearly thought I was being a real bitch because he carried her bags in from the car and ran her finger under cold water instead of like me saying “It serves you right for doing such a stupid thing!” She’s nearly 14, when is she going to grow out of these things?!!!

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