Friday, July 16, 2010

Kids With Special Needs Around The World: Sweden

This is the first in a series of posts I hope to do from moms of kids with special needs around the world (e-mail me if you live abroad and would like to be featured, or know of someone who would). Please give a warm welcome to Towe and Tekla! I can't think of a more inspirational way to kick off this series.

This is a post from Sweden. My name is Towe. I'm 25 years old and work as a freelance writer and columnist. I blog at Smulgubbe and I am working on a children's book where the heroine is in a wheelchair.

I'm also a mother of a little warrior princess with cerebral palsy. The beautiful one is named Tekla, which is a Greek name and means "Through God's good reputation" (something like that). She is really a caring little fighter who loves to meet new people. Mostly the small ones. She was born seven weeks early by emergency caesarean section because my placenta broke prematurely. I was home alone when the major bleeding occurred and had to call the ambulance myself. Just 47 minutes after my call, she was born. When she was delivered she was not breathing by herself and was completely blue. The heartbeat, just a few irregular heartbeats. And a bit later, her lung collapsed....

She was on her way to dying. It was very close, but thanks to several talented pediatricians and surgeons she survived. Thank God. She laid in the incubator for a month and then she was actually declared healthy. It was eight months later that we began to suspect that the oxygen deficiency had done damage to her brain. She never kept up with their other children and both her motor activity differed significantly. Otherwise she was healthy and happy baby enjoying life, and rocking our world :)

Today Tekla is 3.5 years old and she is a bucket full of sunshine. She's still acting like a rock star, and I'm her biggest groupie. She just had an operation to get a peg in her stomach because she is not getting sufficient nutrition. She can eat by mouth but can't eat sufficient quantities required. The operation went very well, and as with most things in Sweden it cost us nothing. Indirectly, I have paid for it because I pay taxes. In Sweden, most of the health care is for free because we pay high taxes. Children who have some form of disability get habilitation. Rehab? Don´t know the right word. It gives you access to physiotherapy, aids, medical assistance and other necessary support. They also help to coordinate botox and orthopedic surgery. Etc.

Generally in Sweden, support for children with disabilities is very good, although attitudes differ from municipality to municipality. But because of our tax system any help will be free and it works. Sometimes you have to raise your voice, it depends on where you live. In my family we have been lucky with the authorities. She attends regular kindergarten with an assistant who takes care of her, a little extra and it works out great. The first thing she says when she wakes up...well ok she don't speak but I ask her., "Hi starshine, you wan't to go to your friends?" And she nods very expectantly. Then we ride the wheelchair like its a Harley.

Other things that we get helped with:

- Horseback riding and hot baths are examples of physical therapy offered for children with both physical and mental disabilities.
- Financial assistance for the purchase of a car. Adaptation is done free.
- Renovation or expansion and adaptation of housing.
- People with certain disabilities are entitled to financial assistance. As a parent you can work yourself as an assistant for your child, or hire someone else. One can also apply for temporary housing with another family. We have that for Tekla and she lives two weekends a month with my parents as relievesr. You can also apply for respite at home. That someone comes to us a few hours a week and helps.

Being a special mother of a soldier like Tekla is really a privilege. I love the life that went so differently, and initially upside down. She has taught us so much about life—about gratitude and humility. That miracles exist and that nothing is impossible. That joy can take you around the world! And I'm so proud to be her mother.


  1. She's adorable! And I love your optimistic and caring attitude, Towe. I love reading about kids like ours all over the world. Great idea!

  2. Sounds as if support is very high on the list, as is financial aid. This would make life much easier for those caring for a child with a disability. This little girl looks so precious - I can just see her conquer the world as she gets older!

  3. What a beautiful child!

  4. This is a beautiful post and it's fascinating to hear about your experiences in Sweden. I'm glad you have such wonderful supports there for parents and kids!

  5. What a beauty! What great support you have in Sweden - that is wonderful. Thanks for sharing your precious girl with us. Sounds like she is on her way to conquering the world!

    Ellen - what a great idea!

  6. You have such a beautiful child -- thank you for sharing her story with us. I am so struck by the extreme disparity in services to children with special needs in Sweden and here in the United States. I believe your country is so much more civilized and that ours is near-shameful in that regard.

  7. She's gorgeous! And it's good to know that some government are actually committed to helping children with disabilities and their carers. I love the idea of a series of post from kids around the world. I look forward to the next one.

  8. What a great idea for a series of posts, ellen. I'm excited to learn about attitudes toward and health care for special needs kids in different countries. I also firmly believe that every little girl should be greeted as "starshine" in the morning.

  9. What a gorgeous little girl! Thank you so much for sharing your story with us.

    I am currently in a program in the US and we recently learned about the history of the Disability Movement in the USA. Many of the thoughts on how to include the children in our society instead of sending them off to institutions came from Wolf Wolfensberger's time spent in Sweden and Norway. It seems the US had learned a lot from your country and, while we still have some distance to go to catch up, I am thankful that your country is so inclusive for persons with disabilities.

  10. She is beautiful! So nice to hear of other happy children in other parts of the world (I'm in Canada, and our health care system is similar to yours, I think!) Thank you for your story!

  11. What an amazing story! And she is such a doll! I just have to say this is the exact reason I think we need a universal health plan in America--instead of fighting day in and day out for support, treatment, therapies and more for our children, we could enjoy them and marvel in the beauty they bring to our lives.

  12. Hej Towe,
    En kompis till mig hittade din artikel! Det var så roligt att läsa om dig och Tekla. Jag börjar nästan längta hem när jag läste om er och hur mycket hjälp ni får! Här kan man få samma stöd, men man får kämpa för varje liten sak och det är väntelistor för allt!
    Om du vill läsa om vår Jacob, kan du gå till:

    Lycka till med allt! - Maria.

  13. Here's a translation of what Maria said—gotta love Google translate:

    A friend of mine found your article! It was so fun to read about you and Tekla. I almost long for home when I read about you and how much help you get! Here you can get the same support, but you have to fight for every small thing and there are waiting lists for everything! If you want to read about our Jacob, go to: / visit / Jacob Hallberg

  14. And, oh, I totally agree with what's been said, Sweden is so much more progressive than the U.S. about care for kids with special needs, and health care in general. Canada too.

  15. What a gorgeous little girl - she's wonderful! This is really interesting xx

  16. This is really so informative and inspiring. Thanks.

  17. You are both beautiful!

    Both in her chair and in the stander she is positioned perfectly in my opinion. Wishing our DME was not so tied-down in regulation.

  18. What a beautiful post! I love that she calls her daughter "a soldier" and is clearly her daughter's biggest fan and advocate. Tekla is a gorgeous little girl and it sounds like she's has an awesome personality to match!

    Ellen: What a cool idea! I look forward to more guest posts like these.

  19. Ellen,
    GENIUS idea!!
    I loved this post! She is an adorable little girl!

  20. I agree with others sentiments - great idea to have guest posts from families from around the world. Looking forward to more.


Thanks for sharing!

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