Friday, September 11, 2009

Disability is Natural, Part III

I have no delusions that everyone is interested in reading book-length posts about our experiences in raising our family, or about my own personal philosophies, but the following may be helpful for those of you currently wading through the "therapy" dilemma. This is a fairly long post, so read on if this is a topic that is of interest to you :)...

There is a tremendous amount of pressure today to provide therapy–-and lots of it.

Everywhere you look within the disability community, you see it and feel it: it is all just too much.

As parents of children with disabilities and delays, we want desperately to help our children reach their potential. We love them. We believe in them. And there is so much "help" out there--so many services, therapies and interventions; new supplements and protocols; endless amounts of information on the web; other parents and doctors who see tremendous potential and are seeking answers and treatments--to make our hopeful visions of the future become reality.

At the same time, we begin to realize that (1) constantly seeking answers, treatments and interventions might suggest that we don't accept our children "as is", and (2) that we'll always feel like, despite huge effort, whatever we've done is not enough.

I don't really buy in to the philosophy that getting "help" means that we feel our children are somehow flawed, although I definitely see the danger in accepting services or interventions without having a firm idea of what that actually means. I see the pit parents can fall into by internalizing the language and processes of the service and medical systems, or in feeling the need to be therapists as much as parents.

As much as we see the abilities and potential in our children--and as much as we'd like to not point out their challenges--it is hard to deny that a child with delays or disabilities has areas of need. What many of us struggle with is how to address this without further pushing our children down the path of being "different"--without unknowingly encouraging their isolation from peers and community by placing them in "special" situations.

I never want Bridget to feel that she needs to be more like everyone else, that something is inherently "wrong" with her, or that her life is filled with "work". I want her to be connected and fulfilled.

And I completely intend to "help" her to do that, just as we have done and continue to do with all of our other children. All the kids deserve to have our support, our genuine interest and effort in providing every opportunity to live a full and happy life. They are all more than worth it.

(Kyle and Brian both have had speech therapy--not because we felt their speech delays were flaws, but because others were having a hard time understanding them which was adding undue frustration in their lives. Sara has had orthodontic intervention--okay, it was just a retainer--to correct her bite for function as well as aesthetics. You get the point. Without giving away information that my teenagers and pre-teens would have my neck for divulging here, there have been many other things we've utilized--from supplements to procedures to therapies to help our other children live full and happy lives.)

Most of the life-building, though, goes on at home. It is here that we are doing the most important work: we are helping to nurture the development of people. All the stuff that goes on outside the home, and outside the boundaries of our family (at school, at the doctor's office, in therapy), is only supplemental in nature and mostly by choice. The development of our children is primarily our responsibility, after all. Even without specific education or training, a parent's perspective and instincts trump all others.

We treat Bridget--and our decisions regarding her care--based on these beliefs. We are determined to be educated and to understand the things that are unique about her having Down syndrome. We also understand that she is a person in her own right, and that Ds is only one aspect of Bridget. We realize that certain accommodations or assistance will benefit her and make it easier for her to learn and grow as an individual. We have always included her fully in our family life, and have worked teaching and wellness into our normal, daily routine. Bridget has more than her fair share of doctor's appointments (mostly for well-checks, routine testing or follow-ups), but we all understand that it is to keep her healthy and able to learn and enjoy life. We would (and do) do the same for each of the people in our family.

This all brings me back to Kathie Snow's bio (which is available on the Disability is Natural website), where a few sentences really stood out (Snow is talking here about leadership training she participated in for adults with developmental disabilities and for parents of children with developmental disabilities):

[The training] was life-changing, and it validated my hopes and beliefs that my son and others with disabilities, and their families, could enjoy rich, full, ordinary lives. Our family didn't want a “special” life; we wanted an ordinary life.
This describes so clearly the simple wish we have for Bridget, and for our lives with her. Is it possible?

Again, from Snow's bio page (talking about her approach with her son):

We found more natural ways of helping Benjamin do what he wanted to do (instead of trying to force him to do what professionals thought was important). It's not that therapists and other service providers aren't helpful and valuable; they are. We just need their help in different ways. We need them, as consultants, to teach us—parents, teachers, day care providers, and others—how to incorporate beneficial activities throughout a person’s day, in natural environments, and to do so in ways that do not send the “not-okay” message. And that’s what we did.
And it is what we have been doing--"by feel". It is what feels right, what intuitively we know is best for Bridget. Each individual, and each family, is unique and what's right for one person may not be what's best for another. But this is where we are today.

We have agreed to partner with specialists, educators, and doctors to help Bridget when it benefits one of three areas: that is, the activity, appointment, intervention, therapy, procedure or supplement has to help Bridget to be more happy, more healthy or more independent. If it doesn't fit into one of those categories, it is not important to her, therefore is not worthwhile to do.

We follow her lead, and enjoy every minute with her. I write and manage this blog to show others how much Bridget is loved, how full of potential she is, and how much she has to offer the world.

Her human worth is not tied to her achievements, though she is capable of so much.

She is interesting and funny and talented, all in her own right. She deserves to make her own way in this world, even if it requires a little extra "help".

I'm excited to see where she's headed. I love that I get to take this journey with her...


  1. Hi Lisa -- That's a great post. I like your criteria for therapy -- will it make her happier, healthier, more independent?

    I know in my son's early days, I was on a mission to find "the magic bullet" that would push his development forward significantly or minimize or reduce his disabilities. There always seemed to be some new therapy or supplement being touted as a "life-changer."

    That leads to focusing on "what could be," instead of the richness of "what is" -- we can lose sight of what makes our children precious as they are. Thanks for your post.

    Have a great weekend! Louise

  2. You are so right...we can't lose sight of "what is"...and there are several great posts on your site about this! "What is" at our house, is so right, even if others might think otherwise.

    Chris and I have talked a lot about the "independent" goal for Bridget...and I realize that is really more of a goal for us than for her at this point. It would make things easier if she was more independent, and it may make her happier one day...but we don't know that yet. If we don't give her the chance to become independent (presume competence), then we won't know all she's capable of doing. We'll take it as it comes.

    If she isn't independent at all, and we are in a position to care for her always, so be it. There are worse things to do than to care for someone you love!

    It can be tough when a very high level of care is needed for a long time, but what makes us think that it is not okay/desirable to care for family members? That we might not need the care ourselves someday? When did it become such a burden to give and receive this type of love and commitment? It is part of loving, of being human.

  3. it is common among the newest parents that the focus is on wishing their child with DS was "normal". I read those blogs and remember what it was like for me and am grateful to read your blog where you hit the nail right on the head. There is peace in taking this stance of acceptance and strengths orientation. I'm all for peace!