Tuesday, January 15, 2013

On transitioning a teen with special needs into adulthood


This guest post is from the awe-inspiring Laverne Bissky, mom to Kasenya, who has cerebral palsy. Laverne is an inspirational speaker, writer and coach who writes at No Ordinary Journey. Along with  her husband, son and Kasenya, the family has backpacked in North America, Australia, South East Asia, Africa, Europe and South America. She recently created a cookbook that benefits programs the couple run for kids with special needs in Vietnam. 


The transition from the old year to the new is a good time for reflection. As parents we usher our children through many transitions but as parents of a child with a disability trepidation is often part of that process. Perhaps the scariest is the transition to adulthood which will happen soon for us since my daughter will be turning 18 in 2013. As I reflect on that, I realize that whether we thought of it this way or not our preparation started from the day Kasenya was born.

If new parents of a child with a disability asked me to name the most useful thing we have done so far I would say “have a vision and follow your passions!”. OK, I guess that’s two.“We don’t know how severe the disability will be” they might protest. And in the beginning that is often true, so your vision should be broad. When Kasenya was diagnosed with Cerebral Palsy (CP), I vowed that on my deathbed, people would say that disability never held our family back. But at the time, I had no idea what kind of commitment that would take.

Over time, following your passions helps to shape and give life to that vision. My husband, David, and I shared a mutual passion for travel. So when Kasenya was 4 and her brother Devin was 6 we decided to travel to Australia. I knew that if we were going to travel with our children we needed to start when they were young. By then it was evident that Kasenya would need a wheelchair for mobility and I knew if we waited until she was older travel would be daunting. Australia was a clean and safe place to try out travel and for part of the time we were visiting relatives which made it easier.

We loved Australia so much that we went a second time and our kids caught the travel bug too. On that trip Devin decided that his goal in life was to visit all 7 continents—while his parents were still paying for it! This gave us something measurable to shoot for. My husband, David and I decided we would go until we could go no more—when our money, time or physical strength ran out.

Kasenya and I hold a baby at Saigon Children's Hospital

Last summer we travelled to our sixth continents, with only Antarctica left. (You can read more about our travels at No Ordinary Journey). Following our passion for travel and combining it with volunteer work, we discovered a unique opportunity: working with children with disabilities and their families in the less developed world. And this July we will travel to Vietnam to do a project there. So what does this have to do with transition?

The transition to adulthood involves many decisions. Decisions need to be made about guardianship and applications made for funding so that Kasenya can continue to have the services that she needs. Later we will need to think about where she will live as an adult. The least urgent but most important questions is what she do with her time once she is no longer in school. I have always hoped that as an adult she would be as independent as possible and I knew in my heart that she would contribute something positive to the world, but given the severity of her CP what would that be? That question is beginning to answer itself.

Kasenya will undoubtedly play a big part in our overseas volunteer work. We have already seen the impact that her mere presence can have in changing attitudes toward people disabilities in Africa, Asia and South America.

Kasenya visits the Kampala School for the Physically Handicapped in Uganda

When we visited Vietnam the first time we were invited to meet with a group of parents who have children with CP at the hospital in Saigon. I asked our interpreter why many of them cried when they met us. She said that in Vietnam there is still a stigma to having a child with a disability. Because of our open and inclusive attitude toward Kasenya we had not only brought these families education but also dignity.

The fact that Kasenya’s disability is so severe and so obvious makes her an exceptional advocate especially in the parts of the world where children and adults like her have no voice. She is coming to see herself as an advocate and many possibilities are beginning to emerge for her future in advocacy at home and abroad.

In the beginning, vowing to not let disability hold us back was simply a way of clinging to hope. But a full and deep commitment this vision has helped us navigate through a series of transitions; to see that disability is not our whole life (or our child’s); and undoubtedly has given our child a brighter future.

Following our passions has helped both of our children see that anything is possible. With no limits, Kasenya recently announced that she would like to go to Australia for 6 months when she’s finished high school.

I believe that we can live an exceptional life not in spite of the fact that our child has a disability but because of it. Parenting a child with a disability bestows special gifts. 

In my upcoming book Exceptional Parent—Exceptional Life I share the joys and challenges of our family’s journey. Visit the book site to download the first chapter, free!  

10 comments:

  1. Laverne - My name's Cara, I am 20 years old, a junior in college and I also have CP. I know first-hand how daunting the transition into adulthood can be for someone with CP. Please, take the time to check out my blog, and if Kasenya has a Facebook, urge her to join the You Know You Have CP When group on Facebook (https://www.facebook.com/groups/139973096090322/). I run it and we're a cool bunch of people!!! Feel free to contact me, or have Kasenya contact me anytime. My email is caraliebowitz@gmail.com. I stand (or sit!) in solidarity with a fellow spazzy activist!!! :)

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  2. Ellen! I was so excited to read this piece as I happen to know Laverne :-). She is an amazing woman and it is just awesome that she wrote a guest post on your blog. Hi Laverne! So wonderful to read more about your family's story.

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    1. You are so lucky to know her, Jenny! I'd love to someday meet her and her family.

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  3. This might just be the greatest thing I have ever seen :) Thank you for sharing!

    Nikki
    www.onetinystarfish.blogspot.com

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  4. What an AMAZING family! I, like Kasenya, see myself as an advocate I want to India with my family and people (adults) would look at me and ask "is that the sick child?" I tried to educate them about Cerebral Palsy and I feel like I made a real difference :)

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  5. Laverne - a rousing "Amen!" to following your passion so your children can see and experience what's possible!

    Yes! to living an exceptional life - not "in spite of" disability - but because of the unique beauty of our kids - and our family.

    So beautiful to glimpse what Kasenya and your whole family are learning and doing together. Yours is No Ordinary Journey - it is your own unique and beautiful journey. And you show us how every child and family can create their own lives. Can't wait to read your book!

    All the best - and thank you!

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  6. Cara - So glad to meet you. I'm heading over to like your Facebook page now!

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  7. Laverne and Kasenya - I wrote a post before I read your story. And, to be honest, you have - by your example - shown us what it looks like to live out what I was trying to haltingly describe. Thank you for sharing your story - and for living your dreams for all to see!

    http://lifeafterieps.com/on-becoming-ourselves-living-our-dream/

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Thanks for sharing!