Thursday, October 14, 2010

Kids With Special Needs Around The World: Chile



I've known Sonia Castro for a while now; she is a smart, strong, outspoken voice for our kids, the woman behind the popular Mama Terapeuta blog. Over in Chile, she's a columnist for a parents magazine, the author of the book Mama Terapeuta and one amazing mom. I'm glad to feature her in my series on kids with special needs around the world. Get ready to be floored by what she has to say—and to really, really appreciate the services our kids get in this country.


When I first knew that Ellen was featuring stories around the world I said: I HAVE to write to her! Because so many times I've wanted to yell while reading her blog something like "You are so incredible lucky!" and explain how different things are where we live. So, here is our story.

My 6-year-old girl has cerebral palsy and severe disability. The worst part is that we live in Chile, South America. I would love to say "No, we don't live in trees! We are much more civilized than people think" but when it comes about disability, we are in caves. Almost literally, because here people with disability are still in their home or care homes, we are in square one about social integration. We have relatively good laws about it but what are they good for if no one cares? It's dead letters.

IEP? Early Intervention Program? Insurance? Nope, none of that here. In Chile, 13% of the population have a disability and the State gives no support what so ever. Well, I'm lying... They can apply to get some funding for equipment and they can try to get their TAXES discounted! Yay! Did I mention we have to buy from other countries almost anything? It's complicated, special equipment is already expensive; consider the average salary in Chile is around USD $800 a month and shipping always doubles the price.

As you can imagine, rehabilitation is left to charity. We have a big Teleton once a year, lots of people crying and sad stories, and society gets to feel like they do so much for people with disabilties. Health insurance does not cover rehabilitation, which is why for us doing something alternative like ABR is much, much cheaper than traditional and private therapy. Yes, I am aware we are upper middle class so we can afford it, but that only makes me angrier because so many people don't get to choose.

But there is more than rehab in our lives. What about education? "Oh, dear, she is in this world just to share her joy with that beautiful smile"—I've heard so many times. We have about 200.000 under the age of 15 with a disability and almost 70% of them go to a special school, where the program usually sucks (by "sucks" I mean they don't even try to teach them reading and writing). We are not even at that point where "severe" cases go to special ed, but almost everyone!

My daughter is due for first grade so this has been my lastest battle: find her a "regular" school, because I don't care what people may think, I know she can learn. That's why I love to be in touch with people from other realities, where children with disability are actually given opportunities, I've even read books writen by young people with CP. And guess what: My daughter has already learned to write! So yes, she can! But I don't even remember how many schools I've contacted, how many times I've heard "no". Who knows, maybe we'll be moving to Canada or the States just to find a school :)

Universal design? Don't get me started... I've been started a small movement called 'Plazas Para Todos' (Inclusive Playgrounds) to try to spread the word about inclusive playgrounds  that I think would trully help integration from early ages. So far, only 15 playgrounds in Chile are accessible. Did you know that Chile is a long line next to the Pacific ocean? We have hundreds of beaches and not one of them is accessible.

You can name it and we are far behind. So here are our choices: 1) move 2) accept it 3) try to change it. I know we cannot change the world nor our country, but we are definitely going to try and do our best. I have my blog, Mamá Terapeutato connect with others, with and with out special needs, and I wrote a book that got us thru the media, I even went on CNN

Chile is still on square one with social integration. There is so much to do and it has helped me a lot to be able to communicate with other moms around the world. It helps to know that it IS possible, so keep on sharing and aiming for the best for our kids!

15 comments:

  1. Congrats!!! It's so nice and clear your point of view, that we can see It's so easy to get an inclusive world..... I hope we can do it.

    Gabriela Tobar
    Chile

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  2. Go Sonia! Thank you for sharing your story. I'm sorry it's so hard for you, but your work is going to pay off for so many children and families.

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  3. What an awesome post! I am going home to Uganda for a month in July and volunteering at The Komo Centre, its an Autism Center, the only one of its kind in East Africa. It only costs $300.00 to give one child services for a year, and they are in danger of shutting down! Thats ridiculous! So i'm going to fundraise all year and hopefully bring enough to help 10 kids! So glad you are bringing our children around the world out so we can stop this senseless lack of care!! People in the U.S. complain about no services.. they have no idea!

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  4. Wow -- I loved hearing from Sonia. It must be incredibly frustrating to hear about what is available in North America when in Chile there are so many obstacles to even the basics.

    I hope Sonia will write again about her daughter -- I'd love to hear more about her and what she enjoys. thanks!

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  5. Hey Sonia, What a compelling overview of what you have to suffer to get help for your child! Maybe you should get together with some other parents and send a petition to the president of your country and tell him to get busy and start helping the disabled! If he can spend days at the copper mine (and thank heavens those men are safe and out of the ground!!!!) getting international TV exposure with his perfect white teeth and emotional speeches, he can focus his efforts on needy children, too! Send him a letter, or ten, or a hundred, and get other parents to do the same. Start bombarding him with requests for help LIKE OTHER CIVILIZED countries! Write to the newspapers too! Go on TV shows if you can! Shame him! Send him pictures of the children who suffer without services! Our societies are judged by how we help those with the least--the least opportunity, the least wealth, the least health--after all! Tell him this is his opportunity to secure his place in history as a philanthropist who cares about ALL people! Good luck to you!!!!!!

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  6. Hi everyone!!!

    Thanks for your comments! I'm glad you all like this post :)

    First, THANKS ELLEN!!! What an amazing opportunity this is to connect with others :)))

    Second: BREAKING NEWS, we have school! A regular (Montessori) and lovely one, she starst next year so we don't have to move any more hahahaha...

    Felicia: LOL. I rather don't comment about Piñera! :D But yes, I think we are heading in that direction, so far we have the power parents community!!! :) It's dificcult though and I do believe there is so much that needs to be done before... We are still in the 'pitty' stage... well, it's a vicious circle undoubtly!!!

    Thanks everyone!!! :)

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  7. Hello

    What a joy to read a post by Sonia on this blog so important, I'm from Chile, a therapist Mama fans and sorry my text, I just took my comment and I translated into English.
    Here we are very proud of the work done by Sonia on her blog, she has shown us that it is worth taking the fight for our children, to give them a better life. She shows us every day that you can be happy, we must see and recognize in our children their strengths and not their limitations.
    Sonia every day helps us become better people and better mothers.
    That is why we appreciate and we love.

    I am grateful to Ellen for giving exposure to other realities.

    Greetings to all

    Elizabeth

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  8. nice post but how do we read your blog in the US if it is in spainsh i took spainsh in high school but i am more confortable reading in english

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  9. AZ Chapman--try using a language translator! Google has one, and there's Babelfish and others too. Free! It will translate the whole page and you can get the general trajectory of the conversation.

    I took spanish in High School for three years and I can read most stuff on the web between my memory, an old dictionary and a spanish online translator. I took French too and that's a popular language around my neighborhood so I sometimes use it with the old folks who are native French speakers who emigrated from Canada and are now in the nursing home where I work all these years later.

    It's good for the brain to try to use a new language--keeps it limber!

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  10. I tried to keep up an english versión mamaterapeuta.wordpress.com but I just couldn´t! I'd love to but I don't have the time!

    I hate this language issue! But as Felicia said, there are good translators...

    BTW, Felicia, I got a lot of msgs about your comment!! They all love it :)

    (Gracias, Elizabeth!!)

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  11. So thankful for this post, Sonia. What a good way to get things in perspective for us here. I am a big fan and supporter of "Wheels for the World". Perhaps they would be responsive to you to help draw attention to your country and needs?
    http://www.joniandfriends.org/wheels-for-the-world/

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  12. =)
    El idioma puede ser una gran dificultad (yo no hablo inglés), pero no necesariamente separarnos. eso está claro.
    (usen un traductor ?, así lo hice yo con los otros post. =)

    Yo comparto la opinión de Sonia: mi paìs está en pañales!, sin embargo, gracias a personas como ella, esa realidad se está transformando (cambiando).

    Se trans-forma, pero falta que se "trans-turn", para que salga del círculo de la lástima y el deber,
    y se considere como una opción adecuada y desarrollada de VIVIR la vida.

    cariños! =)

    (I wrote this post in the translator, to make sure you understand what I say when I take it there;)

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  13. =)
    El idioma puede ser una gran dificultad (yo no hablo inglés), pero no necesariamente separarnos. eso está claro.
    (usen un traductor ?, así lo hice yo con los otros post. =)

    Yo comparto la opinión de Sonia: mi paìs está en pañales!, sin embargo, gracias a personas como ella, esa realidad se está transformando (cambiando).

    Se trans-forma, pero falta que se "trans-turn", para que salga del círculo de la lástima y el deber,
    y se considere como una opción adecuada y desarrollada de VIVIR la vida.

    cariños! =)

    (I wrote this post in the translator, to make sure you understand what I say when I take it there;)

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  14. Sonia:
    So sorry that I was out of town when this was posted--got home and couldn't wait to read it! You do so much for Rocio and are a complete inspiration to many. I envy your ability to do so much not just for her, but for all the disabled people of your country.

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  15. Your posts are always a great read and make great points, what a great story from Chile. Yes, no matter how poor our systems may be practically anywhere in North America, we are probably way ahead of many parts of the world for sure. My friends in France even tell me that the accomodations my son received in school with his learning difficulties would not have been available over there. Your blog posts pop up on my Google Alerts for "smart kids" which I track because they bring me some interesting things that I might like to know about for our business "Kidzsmart" which tries to keep kids of all levels entertained in restaurants with kids activity books, etc.
    I'm glad to have found your blog and we may list it on our new blog which may have a parenting side to it, all still under construction. Keep up the good work. I'll bet you are a beacon in a sometimes dark world to many.

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Thanks for sharing!