What price independence?

September 21, 2016

born-this-wayOne of the best things about the growth of cable TV is the breadth of programming and the ability to expose ourselves to things we might not otherwise see up close and personal. This is even more true of so-called “reality” TV. And while it’s true that my Real Housewives habits (only a few) is a product of my inability to look away when women behave badly, that is definitely NOT the reason I follow an Emmy-nominated reality show called “Born This Way.”

The show features young adults with Down’s Syndrome and their parents and it gives me a view into lives I wouldn’t ordinarily know about. Of course we must always factor in the truth: that reality shows are not usually actual reality. But this is about as close I’m ever going to get to the issues faced by these families as the young reality stars move into adulthood.

Adulthood is complicated…

for many with Down’s Syndrome because it brings with it the expectation that any young adult would have: moving out of the parental home, making a living, dating, getting married and yes, having children.  But these exceptional young adults are not like most people their age. Nothing is simple and straightforward. Certain challenges must be faced and what I’ve learned is that their parents must also face those challenges.

born-this-wayOne of the reality “stars” is a young woman from Colorado. She’s an amazing soul who started a business making tie-dyed clothing for customers all over the world. Me among them. But the fact is that she could not operate this business on her own. Her mother is deeply involved in it. She has to be–the young craftswoman needs significant help in the running of the business, more help than the usual entrepreneur would.

When this young woman announced to her mother that her dream was to move to L.A, live independently. and leave her mother behind in Colorado, the look on her mother’s face said it all. The young woman has a seizure disorder, for one. And for two, she’s always had the help and support of her mother. Now, clearly this is an empowered and capable young woman. But her mother had serious and valid concerns about her daughter’s ability to live an independent life so far from family. These were concerns the young woman couldn’t see and I was touched by her mother’s struggle to find a way to get her daughter to think them through. Because the hard truth is that if trouble arose, it would be Mom who would have to make the trip to L.A.  And then the business she’d started: what would happen to that?

Another young woman wanted to marry

and have children. There was significant concern about the couple being prepared for marriage and the parents were doing all they could to provide life skills training and coaching,  but having kids? That could be an issue. If one parent has Down’s, there’s a significantly greater risk that they’d have a Down’s child. If both have Down’s, it’s a near-certainty. And who would care for the child, regardless of its intellectual capacity? It would be very difficult for the couple with Down’s to care for a child without significant help from their own parents. The stricken look on the mother’s face said it all.

born-this-wayOne of the higher-functioning young men told his parents he was only interested in dating women who did not have a disability–and by that I think he meant Down’s. I could see his point–he is handsome and his disability is less severe. He’s funny and charming. But he definitely has an intellectual disability. How reasonable is it for him to think that a woman without Down’s would see him as a potential mate? Could he be an equal partner to a woman without Down’s?

All of the parents deserve praise for having raised children who think so highly of their own capabilities. But as I saw more and more shows, it was clear that this was both a curse and a blessing. There’s a certain reality to having an intellectual disability and these young adults have definitely experienced some of that. But other things–having kids, running a business, dating outside their community–these young adults clearly felt entitled to these opportunities (and why shouldn’t they feel that way?). But it was painfully clear that this would mean that their parents would play an even more significant role in their lives as they aged. Rather than be the catalyst for more independence, it looked to me like it simply shifted more of the burden to their parents. This unsettled me.

I don’t have a child with Down’s in my family and don’t even know anyone with the syndrome. I’m not going to pretend that a TV show can give me a clear view of what it’s like. But it does give me the start of a view and my heart goes out to them all. To the parents, who have to run a fine line between helping their child see themselves as capable– but also taking care to not give them unrealistic expectations. And certainly not taking on an additional lifetime responsibility.

Is that even possible?

My heart goes out to the young adults, who simply want a life like any other person would have. That’s their dream. And why shouldn’t they  have it?

But I can’t help but wonder of the cost to their parents is too high.

The show has made me think a lot about these issues and the price of independence. If you have a child with Down’s in your family, or work with this community, I’d love to hear your thoughts.



23 comments on “What price independence?
  1. Leanne says:

    My nephew and his wife (both in their mid twenties) had a little girl with Down Syndrome as their first baby. She is an absolute delight and very cute, but there will be many hurdles ahead for her (and for them). No matter what the disability, it takes a lot more effort to negotiate the world – through childhood and into adulthood – and very special parents to be able to walk that line when it comes to creating independence.

  2. angie says:

    love that show as it demonstrates what we all ready know that they are individuals who can and will struggle but succeed. I have a best friend who was a teen when her baby was born with downs as the doctor explained she could choose to terminate she knew this was not a possibility she loved him and now he is 18 handsome young man from this beautiful baby. SHe helps him daily but he keeps her happy and active as well.

    come see us at http://shopannies.blogspot.com

  3. Julie Mason says:

    Such a sweet and insightful post about Down Syndrome and it’s hurdles. I am blessed to have great friends with a grown child with DS I have known his whole life (he’s 25 now). Concerns are with the future and what happens when they pass. Providing a meaningful life for all has been a struggle.

  4. Dina says:

    It’s a question I have asked myself more than once.
    I had a cousin that had some kind of retardation and I saw his mother struggling with him for years. The last time I saw him he was 18 I thin, and he acted like a small child.
    Unfortunately, he passed away.
    I believe that she was very saddened but also relieved. And I can’t judge her.
    Who knows how it really is for those people.

  5. Laura says:

    Have you seen the TV show where people who have a disability go on dates? There are plenty of people with disabilities who find dates with people who aren’t disabled, but that being said that is usually a physical rather than mental impairment.

  6. I have no experience at all with Down Syndrome. I do have experience working with asperger’s syndrome though, and I admire the parents tremendously as it is so difficult!

  7. steven says:

    anytime you are dealing with a child or dependent that is on special needs, it’s going to be a tough road. Thanks for bringing this to light more.

  8. Beth Havey says:

    So many parents are challenged when a child is born with a physical or mental disability or both. I cannot say enough about the courage and love of these families, these parents. All parents are challenged in some way, but often this asks even more of them. And yes, as the child ages there is always the question of who will be there for them if the parents die or they become ill.Normalization of any birth disorder helps both the child and the family. It’s amazing how slow we have been to understand this and utilize it. Thanks for your post, Carol.

  9. Touchy subject but I totally get where you are coming from. Sometimes, these are also issues that people without down have to deal with. I guess it is just in parents’ nature to worry about their kids. However, we all need to learn and grow up and being independent is the best way to go.

  10. I haven’t seen this show but I hope it’s helping a lot of people. I can’t imagine how challenging it must be to be the parent of a child with special needs.

  11. I have a grandson with Smith Lemli Opitz Syndrome. I couldn’t be prouder of the way our entire family rallied around him and his young parents. He turned 18 last week.He won’t be able to live independently, ever and that is finally weighing on My daughter and son in law. They won’t ever empty nest.We wouldn’t trade that kid, we adore him but it is a lot of work.

  12. Elizabeth O. says:

    I admire parents who go through everything to make sure that their children gets the life that they deserve. I haven’t watched the show but I’ve heard about it. It’s a great way to raise awareness and help people understand what it’s like.

  13. janie EMaus says:

    One of my best friend’s has a granddaughter with special needs. I know how hard it is on everyone. But also how very special her granddaughter is.

  14. Taking care of a child with a disability is a life changing experience for parents. It is a fine line of providing them with their independence while keeping them safe. It is a job that doesn’t end because they will always need some support from their parents.

  15. Samantha says:

    Such a great view that most people do not see. I cant imagine the hurdles.

  16. jill conyers says:

    You give a very unique and compassionate perspective. It’s interesting that it was inspired by a TV show. Maybe that happens more than I think.

  17. Hmm this made me think, a lot! I wounder what it would be like just to live that life. Its hard I am sure

  18. An incredibly insightful post on a truly difficult subject. You have approached this with such maturity and compassion.

  19. Rosemond says:

    I love TV and its ability to make us see people and their sorrows and triumphs in ways we didn’t imagine before. I too love shows like this that open us a world and get us to think about the challenges of those around us. I haven’t watched this show but now I think I need to!

  20. Eileen Kelly says:

    My oldest does not have Down’s, but he is a high functioning Autistic adult. Being high functioning, he also has aspirations of things that may be out of his realm. The older he is, the more involved my husband and I have become with him and employment. We constantly worry, what parent does not about any of their children. I remember the first time we let him go to NYC with his friends..I was a wreck, but he was fine.. I have learned that I need to let him try and if he fails at something, we pick up and start again I loved reading your post

  21. Kari Ann says:

    Now this is a reality show that I would actually watch. Most reality shows are all fluff but this one sounds like a great one to let others see how people live.

  22. Very interesting. We often don’t get to see other perspectives and how people view life through their set of lenses. Great post.

  23. Lisa Rios says:

    Such a beautiful post with a deep insight about the emotions that parents has to go through when young adults want to start a new life on their own. That too dealing with one such situation being a parent of a special need child is going to be painful!

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