During the years since Amy's diagnosis, I have put up with people's ignorance so many times that now, on almost all occasions, it goes above my head. I have come to realise that if autism does not exist in someones life, i.e. they know of no one with the condition, then it is hard for them to understand the true implications it has. That's fine. No one can be expected to understand everything. There are many things I do not understand too. But learning is good; gives us a better insight to the endless difficulties faced by our society today. A lovely little girl asked me recently, "does Amy have problems?" A very innocent question and one that I struggled to find an answer. I wanted to reply, "we all have problems, Amy's are exhibited for all to see, yours are safe under lock and key."
But of course I didn't say that. I told her to ask a teacher at school. I passed the buck. What I did do, was gather Amy inside and hide my face from her view, realising that if I hadn't, she would have seen my tears. Oh, don't get me wrong, I wasn't upset because of Amy, I was emotionally charged because upon the little girl's question, just before I turned my back I caught the little boy sat next to her nodding his head and saying, "yes, she does have problems", but you see, he was serious. I really like these children and don't blame them one little bit for their childish banter; but it made me think about all the ignorant strangers who have snubbed us, pulled their faces at us, commented on my "out of control" child, stared at us, shook their heads at us and sometimes even pulled their children away so as not to "catch" anything. Children are innocent, perhaps not all, but certainly these two. They just said what many people think. And after the tears had subsided, Amy and I sat on the sofa with a bar of chocolate and talked about her day.
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43 comments:
Yes, I can imagine it's very hard for you sometimes,but as you said mostly it's said in ignorance, not to hurt either you or Amy.
Take care
Ingnorance must really get you down and can't imagine how you must feel when people talk like that. I suppose the only thing i can offer is: the people that are worth knowing will understand, those who dont, well , they arent worth your time.
Take Care all
MW
x
Autism is so hard to understand. And from the outside, people only see a perfectly healthy child behaving badly. I admire your courage and perseverance.
I have recently read a really interesting book written from the viewpoint of an autistic teenager. Maybe you would enjoy it. It is call The Curious Incident of the Dog in the Night by Mark Haddon.
From one who knows...... sometimes we have to trust there is a God, but still tie up our camel, i.e. eat copius amounts of icecream, to get us through.
I hear your pain sista.xx♥
Aw, Crystal....... that was a post that affected me too, as you know that I have to put up with these remarks too because of my grandson.
Every time I hear anyone say anything unpleasant about an autistic child at the school where I work, then I feel it is a personal insult to me.
What can you do?
I think other parents of children with many other conditions, probably feel the same way too.
It is not easy to *stand out* no matter how.
Maybe we can only blog about it & hope that people will realize that these children have a lot going for them.
I think people fear things they do not understand, but once educated they come to understand and accept. Just look how people's attitude to Down's Syndrome and Cerebral Palsy have changed over the last forty years. Once upon a time, any one with those "handicaps" were looked upon as insane, now we know that these handicaps do not preclude jobs and relationships like able-bodied people.
I think your blog is doing a lot to explain autism (I knew nothing about it at all) and hopefully we readers are now enlightened to the hurdles Amy faces and how she copes. I am sorry you were reduced to tears, but you don't need me to tell you that you have a beautiful daughter who will bring you lots of joy.
Aww I hope you enjoyed your chocolate...
Big hugs
xx
Crystal....so much to say. It is true that those "once removed" experience the pain of public ignorance more than the person who it's aimed at....does that make sense?
Am finally I'm able to comment after 3 wks of not being able to, and wanted to come and say hello...glad I did...don't be sad...
xxx
BTW fancy entering the competition at my place and Amy's? Prize is a weekend with 2 nights at Best Western Stoke on Trent and 1 day family pass at Alton Towers! http://www.perfectlyhappymum.com/perfectly_happy_mum/2009/07/ladies-and-gentlemen-it-is-competition-time-.html
Amy's is link on my page, so double to chance to win! :)
It is hard but although kids are blunt and will always ask the difficult question, they are quite often very accepting of another child's special challenges in life. They are simply questioning why the other child is different from them. It is quite often parents and adults who cause feelings of discomfort or embarrassment. I have always been a great fan of plain speaking personally. And I have two boys who are differently abled with ADD and difficulties at school. Quite often a simple answer is enough and the children get on with playing.
Children repeat what they hear, don't they? So do adults for that matter. But its the ignorance that hurts, I know. Very hard for you though.
i cannot profess to know how that must feel. i haven't been there. but ignorance hurts. that i have felt. *hugs* to you both!
Ignorance is a state of mind held by adults and fools.
Having similar probs with Olly at the mo.
Be strong, the world is changing slowly, we'll see it through.
Love RMxx
If adults could only accept things with the innocence of childhood, the world would be a better place. Sadly, it's adults who teach their children how to loose their innocence, by their own bad examples...
Oh, I think I was sensitive about these things in the beginning, but as many times as I've been hurt by total strangers, I've been helped out by them, too. Some people have great big hearts.
With the frequency with which autism occurs, it's a pretty good chance that more and more people are finding their lives touched by this problem. Perhaps the little girl's questions were innocent enough, and she was looking for a reason that could explain what her heart and mind were telling her.
I will tell you CJ, after doing this for nearly 20 years, it gets easier after awhile.
Hugs and xxxs for you and Amy!
Just because.
It's a shame that there is so much ignorance in the world. People are so quick to judge each other negatively. Children are curious and can be very cruel, but they are still learning about the world. It really upsets me when adults, who should know better, choose to be ignorant and cruel.
Your sweet little Amy is so lucky and blessed to have such a loving, supportive Mum! I admire you so much for your strength and wisdom, and your willingness to share your ups and downs with us.
You reach countless people through your blog, and teach us all valuable lessons, if we are willing to learn them.
Big hugs,
Angela
I get the same silent judgement too and it is hard. Hope you're ok and drop me a line if you need a chat, you have been so helpful to me so hope I can be back xxx
I wish it was easier for people to see outside the proverbial box, though for kids, they don't understand this sort of thinking, usually. They are so innocent and sometimes they don't realize that some of the things they say can hurt others. Before I decided to home school our daughter, I'd considered furthering my education to become an art therapist because I wanted to help kids like your daughter. Not to change them, but to help them to be happier and to be able to live a good life in this world that isn't always so understanding. It must be difficult some days. Keep your head up! You're daughter is lucky to have a Mom like you.
chocolate always helps... kids are innoscent and speak their mind... no one has probably told them how special amy is... how each of us are in their own way... even mothers sitting ont he couch talking our day out with us. have a great weekend!
Anytime we go anywhere with my sister or nephew, we get the Same treatment! They both have cerebral palsey...
Hang in there little love. Let it roll, like water off a duck's back...People HAVE to WANT to care before they WANT to get informed! I gave up years ago...I just love 'em like crazy and keep going!hughugs
This really interests me, my most recent post is also about ignorance around learning difficulties / disabilities. I work for Mencap and I'm currently developing some disability awarness materials to deliver to children as part of their citizenship lessons at school. It's so important that kids learn about individual differences from an early age.
Lovely words as always. As a special treat to the lovely children, I brought out a puppy when the taxi arrived before. They were over the moon!!
Thank you for your comments, CJ xx
I do think that attitudes are changing, but only gradually...and I feel your hurt through your words.
We fear that which is alien or strange. We don't know what to say and so say the wrong thing.Most of us would cut out our tongues rather than hurt you and Amy, but it is true, ignorance cannot be an excuse...there is enough information out there and we should find it and encourage others to do so.
Hugs.
I have only step-mum experience around autism. It must be very hard, particularly when on the outside, Amy is no different to anyone else. Children always ask questions, as you know from Amy's own quite logical and lateral thinking. So I would say, no, she doesn't have problems, she is just different, as we all are, in our own way from each other. It's only us who label them as problems.
I like it when i get an oppourtunity to educate a child before they are taught negative things by their parents or others.
But it is hard sometimes and i dont always have the right words.
Hugs
Ignorance is a terrible failure of society and needs to be wiped out at every opportunity. Whenever there's a chance, Amy's autism needs to be discussed openly without shame like any other condition children can have.
Maddie - I really like your suggestion. I wish I could have thought of those words yesterday.
We have been lucky, most of the children at Amy's school are wonderful and have accepted her as she is. We really do consider ourselves lucky in that respect.
Thank you for your comments, CJ xx
The age-old proverb "judge not and you shall not be judged" comes to mind, for 2 reasons:
You,Crystal,are very kind and don't judge these strangers.
They, meanwhile,take it upon themselves to judge you and your child.
Children, in my experience, don't judge, they say it how they see it, without recrimination.
We could learn a lot from them.
P.S. You're doing a great job with Amy, she's a wonderful girl.
Oh CJ, so many people are ignorant. I know very little about autism, but I hope I would never judge or comment on a child as some people feel compelled to do x
The problem is that autistic children look perfectly normal. With Down Syndrome and Cerebral Palsy the difficulty is obvious.
Out shopping one day, I noticed a rowdy child wearing an Autism Support Group t-shirt. Obviously parents were giving other shoppers a heads-up. Although in one sense it seemed a great idea, I was not entirely comfortable with it. I don't think it good for the autistic child to identify too closely with the label as I feel perhaps it may set up limits in the child's mind as to what they may be able to achieve.
I hate having to explain to people that Huon is autistic but if I don't then I feel both he and I being judged. He is such a happy gentle boy with a lovely sense of humour. Maybe I should just call him eccentric.
The comments of these two children were no doubt wholly without judgement. That is the difference between children and adults - we lose the ability to see a situation for what it is and start to judge people on how they fit into cultutral and societal rules - children don't judge. Assumptions are the domain of adults, children assume but about simpler stuff such as what Santa will bring for Christmas because they sent a letter. They don't make assumptions about how someone should behave then bitch because they behaved differently - unless it is a horrifying little bully of course but then they tend to turn it in on themselves and say nothing. You will always face ignorance and bad manners. Just as you say, most people's 'differences or challenges are under lock and key' - except for the adult eejits that blurt out what they think without giving the situation some thought - that's their impairment - they just don't see it. Amy's difference is biological and brings many other gifts - these ignorant blabbermouths are guilty of stupidity and bias. That is their legacy to the world, how very fitting!
I'm so sorry you and Amy have to experience the insensitivity of those who don't understand. Autism awareness has improved a lot, but it still has a long way to go. Blogging about your experiences will help the rest of us understand what you're going through. You definitely have a sympathetic audience here.
Its hard to deal with people who are ignorant. They dont mean to be ignorant they just are. Since day one I have dealt with this because of my daughter being born with a birthmark which covers her whole arm and causes it to be larger, and its purple. Early on though I learned that comments good or bad had to be dealt with in the exact same matter of fact manner, anything less would make my daughter feel that her condition upset me. I wanted her to be ok with it, even happy with it so I had to be too!!!
Just think of something easy to say when people make a face, or a rude comment. Something short and to the point. "My daughter has autism, I'd appreciate it if you could be sensitive to that." You dont owe these people an explanation as to what autism is, there is enough information in the world for them to go look it up themselves.
Its hard though, after 15 years of this I still want to cry if I hear someone make a negative remark. And if she hears it, I want to commit some major violence upon the perpetrator. But i cant. I can only keep repeating the same thing I have always said to her, "you are beautiful and perfect, THEY have the problem, not you."
Thank you for these fantastic comments. You have delivered some excellent points.
I have special cards which I give out, have done for a few years now, which simply say a little about autism and, I'll tell you what, I'll scan one in on my next blog for you to see. They're very useful, especially when stood in a queue in the shop listening to some ignoramus tutting and huffing behind me! I gave one to a shop keeper not long ago, in Boots!
That's why I like those two kiddies; they were honest and innocent and their question wasn't ignorant, it was inquisitive. But I handled it wrong, I should have given them a straight answer and some of your comments have helped me to find that answer.
Together, it's obvious, we can help each other to understand. Not only about autism, but about other conditions and illnesses which we would otherwise know little about.
Thanks again, CJ xx
You know Crystal the words may not be meant quite the way they sound. My lad told me about a little boy in his class with "problems". He was actually cross because he doesn't think the teacher is kind or patient enough with him. My boy recognises the lad is special, not that he has problems in a bad way, but problems functioning in the way that is expected of him. My boy protects and likes this other lad very much for what he is and accepts him totally. He doesn't see any of the special issues as faults and I wonder if these other children really feel that way for Amy but just don't quite know how to articulate it.
It must be so hard to deal with these kind of comments. I wonder if it's easier hearing them from other children, innocent and questioning, and perhaps less judgmental than from adults.
I like your silent response, about everyone having problems, open or hidden.
This hit a nerve with me, because while I don't have children myself, my aunt's nephew on her husband's side has autism. Robert's a sweet kid & does talk & play with the other kids, but I still remember when he was clingy, anti-social with everyone, & wandered off on his own. His own mother was in denial & didn't get help for him until he was about 5 (he's almost 8 now). It angered me to hear my relatives talk about Robert's "problems" like he was contagious - I stuck up for him. He's not a kid with autism...he's just Robert!
It must be so hard. I'm so sorry you have encountered these hurtful instances.
Hugs to both you and Amy. Chocolate was the right way to go.☺
This past weekend, I took my 3 yr. old granddaughter to visit her 86 year old great-grandmother. At 86, limbs don't work as they do when you're younger. My Mom walks on a walker and her knees don't bend so well. Therefore, when she sits, she pretty much lets go of the walker and "plops" down in her chair. After we had gotten back home, I noticed my granddaughter "mimicing" her. I took the time to explain to her that when people get older, it's hard for them to do things that we take for granted sometimes. Explaining it so a 3 yr. old could understand. I also included explanations about people who use walkers and other abling equipment. For the rest of the day, I never saw her copy her great-grandmother again. I hope this helps her in life to understand that everyone is different and like you said, we all have problems. Some just some aren't as transparent as others. You are doing great with Amy and I think she will be just fine.
Grandmargie - that's a lovely tale you have told, thank you for sharing it and making me smile.
Thank you for all your kind comments, CJ xx
Your post brought back memories from my own childhood. My mother used to care for children who were physically different or learned differently than other kids which brought many an adventure to my own childhood. One of the saddest things though was that the one place were these children should have felt most safe and accepted was where I used to feel most embarrassed for them and myself as their companion. Church. I remember in my early teens one gorgeous girl whose condition I can't remember, she was older than me by a couple of years though had an intellectual age of about a three year old. I was singing at the front of the church when she commented very loudly "There's Dani, we love her don't we!" Dear little darling, I was mortified of course but that one event has impacted on my life still 20+ years later because not only of the sweet innocence of this girl expressing her feeling for me, but how the other youth at church treated me as a result. Shame really, a little understanding does go a long way, but it should have come from their parents first - which clearly it hadn't.
I enjoy reading you Crystal, your daughter sounds delightful x
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