One

I may be way out in left field with this post, but it sometimes seems to me that some parents of children with disabilities seem jealous that their child is not ‘as disabled’ as their friend’s child.

There grows in communities groups of parents who have children with disabilities. These groups may grow out of shared hospital experiences or shared school experiences or maybe just through word of mouth from one family to another. And the adults in the groups come together for support and to share their stories that usually only others in similar situations will understand. More often than not, the children represented by these groups have very similar disabilities – parents of children with deafblindness, parents of children with Down Syndrome, or parents of children with trachs, for example. But what if you are the parent of a child that just doesn’t quite fit the same description of other children in one of the groups? What do you do and where do you find your support?

What I have seen several times is that the parent might slightly exaggerate their child’s disability. Or, the parent will accumulate the trappings (high tech wheelchairs, special vans, etc) that might admit them to their group of choice. They will pattern their daily experiences (“Mary was up four times last night, and I am so exhausted today”), after the others in the group to which they wish to belong. They will adjust their lives to place more focus on their child and that child’s disability if doing so will admit them to the group.

Here’s an example without using real names, of course:

Sue is a young 30-something parent of a little girl with CP. On one of her visits to the hospital, she met another parent, a parent of a child whose survival depends on a trach, tube feeding, and constant suctioning. That other parent talked about her friends, other parents who shared a similar life and who got together regularly for birthday parties, lunches, and other such outings. Sue, feeling a little isolated in her life, exaggerated the level of her daughter’s issues just a bit to wrangle an invitation to the next group meeting. And from there, the exaggerations continued, but she was admitted to the group.

It saddens me that parents might feel a need to do this. It saddens me that we parents of children with disabilities isolate ourselves with others in similar situations just to find the support we need. We talk about inclusion all the time, and all the while, we often unknowingly are excluding.

I know it’s difficult for true inclusion to work, and I know that there are many, many facets to inclusion. I know I may never see it fully bloom in my lifetime, but that doesn’t stop me from dreaming about it. I suggest we try to envision the inclusive world we all desire while at the same time finding the support we need. I fully realize that it is much easier to bond with another parent whose child is on a trach if my child is on a trach. But let’s try setting aside the specifics of disability and concentrate on the specifics of humanity – regardless of ability.

We may not be able to change the world as one, but if each of us makes small inroads, I have to believe that one day the world will change and be universally accepting.

Hope For The Future

The belief in the inner beauty of each and every human being is at the heart of L’Arche…and at the heart of being human… We do not discover who we are, we do not reach true humanness, in a solitary state; we discover it through mutual dependency, in weakness, in learning through belonging.

-Jean Vanier, Becoming Human



I believe my biggest fear in life is what is going to happen after my death – happen to Ashley.

Ashley has made great strides in her short life. Doctors said she wouldn’t live – then said she wouldn’t walk – then said she would never communicate. From infancy, they recommended institutionalization. As my regular readers know, those doctors were very, very wrong. But, Ashley will need support throughout her life.

Just as Helen Keller needed assistance, so will Ashley. So, my challenge is figuring out how to ensure that assistance even after I am no longer able to provide it myself.

My experience with run-of-the-mill group homes is not good. Even under the best of situations, I don’t know of any group homes that are equipped or knowledgeable enough to support a person with deafblindness. My oldest son has tossed around the idea of establishing a group home, a group home done right, when he graduates from college. But that idea is mingled with a lot of other dreams he has, so I can’t count on that happening. And, I often feel that it is selfish of me to expect him to continue to care for his sister after I am gone. I know without a doubt that no one could care for her better, and I do pray that even if he chooses not to be her lifelong caregiver that he will at least stay very close to her.

I was offered a glimmer of hope last week when I read an article about L’Arche, a group that enables people with and without disabilities to share their lives in communities of faith and friendship. I’ve visited their website and like what I see there. I plan to explore this option a lot more, but I’m interested if any of you know of or have heard anything about L’Arche.

I know Ashley is just 14 years old, but the time to start planning for the future is now, not later, in my humble opinion.