In a rare husband-wife moment (you know, those brief intervals between putting the kids to bed and doing the dishes before you can get yourself to bed), my hubby and I were talking about our son. Until recently, we have never used the word "disabled" to describe our sweet little boy. We've used terms such as "delayed" and "special needs". The word "disabled" evokes such negative images that we simply do not associate with our boy. But, the fact remains, disabled is what he is. At 3.5 years of age, he does not eat, he can not dress himself and he is unable to walk. These physical limitations most definitely impact the experiences of his day to day life, and ours as well.
This increased sensitivity to my son's physical challenges is most likely sparked by the ease with which my younger daughter is hitting her milestones. She started crawling last month; first a few tentative rocking movements, then full on reciprocal crawling within days. My son was almost 2 before he started to crawl. In watching her development, I better understand how my son's physical limitations have impacted his development. And, this makes me sad. He struggles. His body doesn't move with ease; he must make a conscious effort to turn his waist, or sit with his legs crossed in front of him, or out to the side. We are constantly reminding him, cueing him, to put his body in certain positions in order to facilitate overall body awareness and strength so that, one day, he will be able to walk. But, my daughter just does it. Her body naturally gets into these positions, and I am awed. I think "My, she's precocious."...but really, she's just typical. And that's when it became clear to me that my son is disabled.
And being able to say this actually makes it easier to accept him for who he is. It's really a flaw in my own thinking, I suppose. When I think of "delay", I think of something solveable, something that can be fixed. My son doesn't need fixing. But, he does need to learn how to live with his physical challenges in a way that allows him to participate fully in the world around him. Sure, he'll continue to get PT, OT and Speech, as well as feeding therapy (because, let's face it, eating is one of the great joys of life) so that he might lead a more typical life....but he will never be "typical". His traumatic start has guaranteed him a life full of "atypicalness".
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5 comments:
Wow, what a great post! It is so true that "disabled" seems so hard to label someone as, especially when it is your own child. I too used "special needs" for a long time with my son. I have caught myself a few times saying disabled and it is like every time that I say it I feel something go through my body.
My son was born at 24weeks after only about four hours of short labor. No time to even think about what was going on really. He spent 227 days in the NICU before coming home. However he was only home for four days and ended up being readmitted and then ending up in PICU back on a vent. We thought we were going to lose him then for about the fifth time.
One month later he came home again. He is almost 22 months old and has been diagnosed with cerebral palsy/dystonia, feeds through gj tube 20 hours a day, is deaf and wears glasses.
I have always known deep in my heart that he would be "special". I love him so much and he is the happiest boy!
I am looking forward to reading your blog as you post...and I can't wait to see pictures of your little guy!
By the way, I love the name Zoey. That was the name I had picked out if we were to have a girl...and I am sorry about your loss. I cannot imagine the pain that came with losing her.
Hello Shannon.
Thank you so much for your thoughtful comment. Wow....227 days in the NICU, then another month in the PICU. What an incredible little fighter you have.
I recently read a book entitled, "Changed by a child" by Barbara Gill. It is more of a daily companion reader, rather than a narrative; but each short entry deals with another aspect of parenting a child with a disability. I found myself having several "aha" moments while reading it, and it was the catalyst for this particular entry.
Take good care!
I don't say that my son is "disabled" as it is not who or what he is. I do say that he "has a disability". It is a part of him, but it does not define him. I hope that makes sense : )
Hi Jodi.
Yes, what you say does indeed make sense! I, too, do not define my son by his disability. I think what I was trying to get across is that I hadn't yet fully accepted his disability as a part of who he is, rather than this foreign thing "out there". In looking at my son, his challenges are not obvious. He's small for his age, so when he's in his stroller, people assume he is younger than he is, and that accounts for his delayed speech and the fact that he isn't walking. His challenges become more obvious when we do a tube feeding in public or he signs rather than using his words (although his expressive language is growing by the day).
I thank you for taking the time to read my blog as I have enjoyed reading yours. As someone who is further along the journey of parenting, you are fast becoming one of my mentors.
Take good care,
Heesun
You write very well.
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