Fear.

I’m going to be completely candid today. My husband and I have been talking a lot about the past, before we found out about Liam’s chromosomal condition. I’ve been remembering the times from my childhood through my adulthood when I would encounter people with special needs. I’m talking about the obvious kind of special needs, where the person might’ve looked very different, acted very different, sometimes shouting loudly things I didn’t understand, sometimes completely non-moving or interacting at all with their surroundings. And I am embarrassed to admit it, but I was scared.

I was scared of people who seemed so very different from me that I didn’t know how to interact with them, so I just didn’t. I didn’t even try to acknowledge their existence in the fear that I might say or do the wrong thing, that they might not understand me, that I might not understand their response, etc.

Thinking back on it now, I am ashamed at my behavior, and so glad that having Liam has changed that for me.

I think it’s a common response to react like I did, but I think that should change. I’ve been following this Facebook page Special Books by Special Kids, where a former special education teacher goes around the world interviewing people with all kinds of disabilities to get to know them and their families. He posts short videos of the interviews in the hopes of making people more aware of all kinds disabilities and be more comfortable interacting with differences. In almost all of his interviews, he asks either the disabled person or the person’s family something along the lines of, “when people meet or see you for the first time, what do you wish that they would say?” Overwhelmingly, people’s wish is that others would not simply look away and avoid eye contact, but instead say “Hi” or give a smile, or introduce themselves. They want to feel included in every day interactions with others, and not like they are so different that people are afraid of them instead.

Watching these videos over the last year and adjusting to life as a special needs parent has opened my heart more than I thought was possible.  Liam is only 2 and still small, incredibly sweet and cuddly, and acts much like a baby to many strangers, who still freely give him smiles and coos and sweet comments about how cute he is. My hope for him is that as he gets older and his differences become more obvious in his facial features, his behavior, his speech, etc., that strangers will continue to show him love and kindness and not shy away from interacting with him out of fear like I used to. I am incredibly grateful that our daughter will get to grow up with an awareness of the differences in the world and that her heart will show that love and kindness to all kinds of people as a result. I just know that it will.

My own personal goal is that I will never again feel too much fear to show kindness and love to a person with any kind of disability, even if it just means offering them a smile from a stranger that they may not have received that day. Now my fear is that the future Liam will too often encounter people like me before I had him, that deny him a smile or kind word in favor of blank stares or avoidance altogether.

I mean, how could you NOT smile at this precious boy when you see him?

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6 thoughts on “Fear.

  1. Thank you for sharing your feelings Bailey. Liam is so precious. I appreciate the updates. It was great visiting with you Christmas and seeing all the new things Liam is learning and doing. Nell is very helpful too. Thanks again for sharing.

    Sent from my iPhone

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  2. Thank you for sharing this and thank you for creating this blog! I have a son who has the same chromosome disorder as Bailey, and I share your fears about what the future will bring. I hope and believe that a strong social network (family and friends of the family) will help him become confident and able to handle rejections from others. I wish you all the best and I hope that du will continue posting updates. It is valuable for us to read about your experiences.

    Liked by 1 person

      • My son turns 2 in June. He was diagnosed last October, but we still have many unanswered questions about how his disorder will affect his life. We live in Norway, and we were told that there are only three registered cases of 18p- in the whole country. We are members of the Facebook group for families with 18p-, and think it is useful to see and hear about other people with the same diagnosis, even though the symptoms vary for each individual. May I ask what kind of follow-up Bailey has? (if he has any) 🙂

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