Tuesday, July 19, 2011


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.


Krystle said...

I think this has a lot of truth in it. I know we have a hard time because I/we really don't have any IRL SN friends. Our neighbors niece has CP & is 17 so I adore being around her because it gives me hope.

I often feel like we don't fit in since Peyton can walk. I used to work with a lady 7 years ago whose son has severe CP. I talk to her every now and then and she's a wealth of information.

Last time I told her I don't feel like we fit in, or that we should do SN public events since Peyton can walk & isn't in a chair. She completely disagreed with that and said I shouldn't let that hold us back from doing anything we wanted to SN related.

I mean she gets SSI so if the government thinks shes disabled I should probably get on board since they are strict. We also got the waiver. A lot of her issues are so subtle though that strangers would never noticed & I almost feel embarrassed.

Ashley's Mom said...

Krystle, I feel exactly the same way sometimes. My daughter can walk, can eat even though she does still have a g-tube, and can communicate quite well with sign language. But, she does still have three brain tumors and seizures which could take her life in a second.

I know we don't 'look' like some of the families whose children can't walk, can't communicate, etc. but many, many of our challenges are the same, and I believe we can each learn from the other.

Ashley's Mom said...

Krystle, I just visited your blog and realize that you only live about 45 minutes away from me!!

I also saw that one of you children is having surgery tomorrow!! Where is that being done - MCV??

Pretty in Pink Photography said...

Yeah at MCV-VCU, we are checking in the hospitality house sometime today. She's a first case at 6:15am so they are letting us stay there so we won't have to drive so early & can get more sleep (that parts funny).

I'm a wreck.

Krystle said...

ops, sorry that was an old account, my email is one & my blogger is another!


Ashley's Mom said...

Who's your neurosurgeon? My kids see Dr. Tye, and we really like him.

Krystle said...

lol Dr. Tye!

We saw Dr. Myseros in NoVA. His bedside manner sucked & his official dx was "I think this is not an obvious tethered cord"

Glad we got a 2nd opinion. Dr. Type speaks highly of Myseros, but I do not. I know another lady who doesn't like him either.

Ashley's Mom said...

I really, really like Dr, Tye, and one other plus is that he is pretty easy on the eyes ;)

My email link is on my blog page. Please keep me posted on how the surgery goes, and if I can bring you anything, including just support, let me know. I only work two blocks away from MCV.

Krystle said...

hey I can't find ur link to ur email from my phones internet. My email is realisticdreams424@hotmail.com if you could just shoot me one so I have it I'd appreciate it.