Reflecting on the Benefits of Deaf Family Events -3/2018


Three days after Family Fun week-end I have some lingering thoughts and feelings swimming through my head, and I thought I would try to find the words…


I am an involved parent, a regular participant in events that deal with educating and advocating for our Deaf children, and am well versed on advocating for my daughter in the school district.  What I get out of most workshops is less tangible than the topic’s being discussed or the obvious support of being with others that share our path.  I find aha moments, nuggets of inspiration and empowerment, and perhaps most importantly a renewed resolve to push forward and do more, do better!


I’m going to attempt to put words to things that impacted me about this week-end.


Perhaps one of the most tangible aha moment came after the fact from my 8 year old Deaf daughter Katie. She has been a bit of an emotional and behavioral mess since we got home.  I chalked it up to being tired and tried to be gentle with my corrections.  Monday, I got a note from her teacher about her uncharacteristic acting out, eye rolling, and even crying at school.  When he sat her down to talk to her, she said she missed CSDR and her friends.
  

Then I remembered that she asked me on the drive home if she was going to go back to CSDR to school. I assumed being on campus and spending the night in the cottages created a little confusion for her.  I explained that we were there (CSDR) for an event, but she goes to school near home at Lafayette, a special day class in a public school. I reminded her that she has a Deaf teacher there and Deaf friends without the long drives each way, and having to wake up so early.  I reminded her that she wanted to go to Lafayette and has regularly told me that she likes it there.  She told me that now she wants to go back to CSDR.  She told me she could live in the cottages and not have a long drive.  Perhaps a little too dismissively, I reminded her that she wasn’t “independent” enough to live in the cottages, she didn’t shower and wash her hair, she didn’t do her homework, and she got in a lot of trouble there.  The conversation didn’t continue, and I mistakenly assumed she had moved on. 


While we were at Family Fun Week-end she didn’t reunite with any of her previous classmates.  And in my limited exposure to the children’s program she didn’t seem to be drawn to any particular children.  Again, looking back, she hardly used her voice all week-end.  She was in an environment where most people were signing and there were interpreters at most gatherings. 
 

Is it possible that she is simply responding to the degree of access?  While her classroom at Lafayette is conducted in ASL, is she missing the access in all of her surroundings? Is it not enough to have a few signing friends around?  Is there an emotional connection to seeing others in her surroundings using her language, even if she is not engaged in the conversation?  The answer is, how would I know? Most of my time is spent in surroundings where people are using my fluent language.  And admittedly, while I have decent ASL skills, I am never fully immersed for extended periods of time, and after just a week-end, where if I get stuck I can find an interpreter, I am exhausted.


I did spend time during the week-end expressing my frustration to administrators and social advocates that the cottages not providing a necessary level of care and experience for our younger children, really renders CSDR inaccessible to a large part of the population it is intended to serve.  And in the case of a Deaf child in a hearing family, who is likely to have fallen behind academically, due in large part to deficiencies in language acquisition, we are missing a huge window of opportunity in their development.   If, as was suggested to me, we are forced to wait until they are middle school aged and more independent to give them an immersive experience, what is the cost?

I think what my daughter’s behavior is illustrating, is that the academic gap that these children will experience, some perhaps to a degree that they will never catch up, is only one aspect, and perhaps the emotional toll is equally and maybe arguable more damaging.  The common suggestion that families must uproot their lives and move for their deaf children is just not feasible for so many.  We have to fix this!

I am a parent who will generally never miss an opportunity to attend an event with Deaf adult speakers or panels of Deaf adults willing to talk about their experience growing up.  I am equally as interested in hearing from parents of Deaf children who are teenagers or Deaf Adults, about the things they did that contributed to their children’s success, the mistakes they made, and the things they wish they had done. It is a huge understatement to say that I am affected listening to the experience of Deaf signing adults sharing what it was like growing up in families that never learned to communicate in their child’s language.  I have been brought to tears, literally sobbing, listening to these stories, perhaps more accurately cautionary tales.  


Admittedly, raising a Deaf child, has been one of the most humbling experiences of my life.  Putting myself in situations so far from my comfort zone.  First, I had to quiet that inner voice that reminds me that I am not good at language acquisition, and take classes anyway. Sticking with a conversation that you are struggling to understand and having to ask “again,” “slower,” or even “I don’t understand,” is not easy.  If I didn’t have a Deaf child, ASL would likely have fallen by the wayside like my 2 years of high school Spanish.


Meeting those activist parents that are involved in so many Deaf causes, fluent in ASL, and so connected in the Deaf community, it’s easy to dismiss what you are doing, and go straight to “I am not doing enough.”  In my case, I clearly don’t get enough practice and my ASL should be much further along.  My daughter has changed schools 4 times from preschool to 3rd grade, a clear reflection of all the mistakes I have made.  Don’t get me wrong, I don’t feel sorry for myself, it just makes my resolve to get it right stronger. 


So this week-end, aside from attending the inspirational presentations of a few strong advocates in the community, I made a point to find them and have a personal conversation with them.  The details of the conversations, while important and helpful, were not what struck me. What really struck me were the unscripted personal words of encouragement that I would not have heard had I not intentionally approached them.  I met Tami Dominguez, an amazing and inspirational hearing parent with a Deaf adult daughter, and a tireless, involved advocate in the community.  She took the time to listen intently, ask questions about my family, and offer advice.  Perhaps most importantly, in the course of our conversation, after telling her about some of our struggles, she said to me “You are doing all the right things.”  One simple sentence that had so much impact!


Julie Rems-Smario told an emotional story with an important message.  It started out with the common story we have all heard over and over, A Deaf child being raised oral, feeling different, finding their way with ASL and a Deaf community and having parents that didn’t learn to sign.  Her story took a heartwarming turn when she talked about what it felt like having her family surprise her when she was an adult, by secretly learning to sign.  It was an important message that resonated with so many of us.  The message wasn’t about what they didn’t do, or how long it took them to realize it was important, it was a message of hope, about it never being too late! I was excited to chat with her, as were so many.  


At one point I looked up and saw a young woman in a tearful exchange with her, and I witnessed something almost too raw and intimate to describe.  I can only presume this woman was not only moved by Julie’s presentation but it had struck a chord. This young woman was literally sobbing and releasing a very deep pain. Julie held her tightly for an extended amount of time in such an intimate way I can only describe it as absorbing or sharing her pain.  It was both painful and healing to witness. I felt bad for watching but I couldn’t bring myself to look away. In that moment, Julie transcended all of her activism and the movements with which she is attached, and she was simply a beautiful person led by her heart.  She made a point to mingle with families, chat with kids, etc.  I took advantage of the opportunity to chat with her and while we were chatting, she asked, “Where did you learn to sign? You sign so beautifully.” Again, a simple statement that had so much impact.


Two very simple, heartfelt, affirming comments, so meaningful to the self-critic in me!  We all have the ability to make this kind of difference!

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