A follow up to my post below...

If you google any word pretty much and autism you will find either a suggestion that it causes autism or cures autism, so mnay people are looking and suggesting cures for this disability. When your child is first diagnosed with autism it is a scary feeling and many people if not all wish for a cure immediately as the thought of something new is scary and this is to many entering a world they do not know.
This is something I have read many times and to me really sums up autism and many disabilities and the fact that it is different to what you expected from parenthood but wonderful all the same. When you have read this maybe you will agree with me that Holland is just a different place and that doesnt mean we need to prevent a trip there, cure people who are there, or try to check the flight plan before its in place!

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

If there was a test for autism in pregnancy........

I have often been asked if there had been a test for autism in pregnancy would I have taken it and if I had known my baby would have autism would I have had second thoughts about the pregnancy. I have also often been asked if I would take away Bens autism and other issues if I could. Well if you are reading this as a parent of a special needs child you may have the same view or a different view from me but I am sure you will agree that everyone loves their child no matter what their needs are. I hope I dont offend anyone with my views and if you disagree with me please dont be nasty in saying so but youre welcome to tell me what you think!

So firstly the whole idea of a test in pregnancy, I personally think it is unlikely there will ever be a test for autism in pregnancy but as there is a test for downs syndrome. The problem with looking for a test in autism is that until there is a cause or a way of diagnosing it other than ruling out other things and observations etc this is going to be impossible. When I was pregnant it was slightly different to what I believe it is now for tests for problems. I had a scan at 12 weeks to check dates and heartbeat then another scan at 20 weeks to check development such as the development of the spine, heart etc. The only other test available was the amniocentesis for Downs syndrome, this at the time (and I believe still does) carried a risk to the unborn child of miscarriage. Now I know some people will very much disagree with me here and if you do I totally accept that everyones decision is their own but for me this was a "no brainer"! I was not prepared to take that risk when whatever the results I knew that I would have no doubts but to continue with my pregnancy I had already fallen in love with my baby. I personally find it hard when people tell me the news that they have had whatever tests it is that are no available and are "so glad their baby will be normal and not have Downs syndrome" to hear that breaks my heart. I know there are a lot of differences between Downs syndrome and autism however the idea that one test means you have a guarantee of a "normal" child to me is horrible. There are so many potential problems, only one of those is autism. In my eyes and maybe I am biased these people are very naive and if there were tests for every possible disability would they take them all or would they pick and choose?? Where do you draw the line?? Of course any tests in pregnancy could never predict accidents, illnesses etc so the guarantee of a "normal" child will never ever exist. Like I say I know many will disagree with me but to me a child is a blessing and if I was pregnant tomorrow and there was a test for autism, would I take it, the answer is no, without a shadow of a doubt.

So, would I take away Bens autism if I could?? Well this is much harder to answer, I wouldnt want to change him because he in my eyes is just wonderful just the way he is, he is a challenge a lot of the time, he makes life like one long obsticle course. However he is Ben, who would he be without the autism, would he be the same little cheeky child who draws every picture with a trump or bottom on, would he be the little boy who gets excited every morning about waiving to cars while he waits for his school bus, would he be the boy who cuddles me so tight I feel like I can't breathe?? The answer is nobody knows so for that reason I could never give Ben that magic pill if it existed to "cure" him from autism. That said I would love to take away some of the things he does to himself and us because of his autism and other needs of course I would because who wants to see their child screaming in a meltdown because something has distressed them so much their whole body cant cope and goes into a place where he has no control at all. Who want to see their child struggle to do all the things that other children can do, even simple things like a trip to the park are near impossible if there are other children at the park at the same time (something which of course cant be predicted!). Those elements I would love to be able to change but I would change them so that Ben could be Ben and cope just the way he is. He isn't different, he isnt not normal, he is a child, he is 6 years old and he is wonderful, the only difference is he is wired differently, his brain doesnt work the same way as other peoples and that is an invisible issue however this invisible disability becomes visible and very physically disabling when due to his different wiring (or that of another person with autism obviously) he is unable to do things other people can. Sometimes Ben physically cant walk because he is so distressed his brain is in overload and he has a meltdown which is so much more than a toddler tantrum that people often see it as. a meltdown is when a person with autism or another similar disabilities body is so overloaded that it can no longer do anything, this can last for 10 minutes or a few hours, meltdowns can follow one another for a full day. Try telling a parent/friend/teacher who is with a person with autism during these periods that autism is invisible and isnt at all disabling, it may not be a child in a wheelchair but that doesnt mean it isnt a disability and should be viewed as just the same, a child (or adult) who is different, this doesnt mean they are not normal because what is normal anyway, define normal??

So, would you change a child just because they dont fit in with what you consider to be normal, or would you change the world to fit in with every child and adult who is a little different so that differences are embraced not differentiated?? I know which I would choose! There is no test for autism in pregnancy and I really hope there never is, some say that is very selfish and crazy of me but you know what I dont care, the reason I hope there is never a test for autism in pregnancy is that if there is then there stands a chance that a child, or more likely lots of children, will be denied the chance of life because of just a different wiring, a child like my Ben and the idea of someone doing that because of the worry of having a child who is a little different makes me want to cry. Life with Ben is very hard but he is wonderful all the same and he deserves just as much of a chance to live a happy life as anyone else. His view of a happy life may just be a little different from other peoples.

The idea to write this as the subject of tonights blog came from seeing the below quote online