January 25, 2013
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Silence Is Not Always Golden
Editor's Note- I would love to tell you I wrote this piece, but I can't. I can tell you I live this and feel this and Jennifer did an amazing job in her ability to express what so many of Special Needs parents live every day. Thank YOU Jennifer!
Silence Is Not Always Golden
I am a special-needs Mom. I am also what you would call wide open. If I am in pain I don’t ignore it, I EMBRACE the pain. I also talk about the pain to anyone who will listen. I think that it is important to explore our feelings in order to grow and learn from our life experiences, painful or not. I also hope that by sharing my experiences they may be a help to others. I HATE those taboo subjects that no one is supposed to bring up. I think that we give those painful & awkward things even greater power over us by keeping them hidden. Yes, I know that everyone processes emotions differently, I get that. I just have a hard time when someone brings up a touchy subject and is greeted with an uncomfortable SILENCE. *cricket*cricket*
I have encountered a LOT of this uncomfortable silence when discussing the subject of my youngest son’s Autism Spectrum Disorder, especially when he was first diagnosed. Autism greatly impacts the life of my family– in ways both good and bad, I’ll be honest. So I tell people. I am NOT ashamed. I want them to know about our life so that I can help raise awareness and increase sensitivity. I want them to know WHY I may not attend certain social functions or keep cancelling plans (but please don’t stop inviting us!). I want them to know WHY my son (or other children with special needs) acts the way he does so people don’t feel the need to secretly gawk. I want them to know that when they see a child having a meltdown in a grocery store it would be more useful for them to offer to hold open a door, not whisper about that “out of control brat” or “poor parenting”. I want to help reduce prejudice & fight a lot of misinformation out there. And also I just flat out like to talk, and this journey has give me a LOT to talk about!
As a result Autism is often one of my major topics of conversation (By the way, it is a REAL mood killer at parties!). I remember when I first joined Facebook many years ago (right after my son’s diagnosis) I reconnected with a lot of old friends and told many of them about our new journey. I told them that I was becoming active in disability advocacy and special needs ministry. I told them what a blessing it was to facilitate a support group for families of children with special needs. I told them we had learned so much about patience and acceptance and love. And I told them that even in the midst of the struggles we had encountered many blessings. I put myself out there, taking the time to tell people what is going on with me. I also took the time to ask about what was going on with them, too! And you know what I got all too often? SILENCE.
Sometimes people responded in general terms, but then ignored the Autism subject. I am very fully aware that in some cases this was related to the superficial nature of Facebook (THAT could be a whole long post in itself). You are connected to people in cyberspace, but not REALLY connected. Some people don’t really wish to take the time to have a deep “catching up” conversation. But this awkward silence happens quite often in person, too. I hate it when people are faced with the topic of special needs and say nothing. Even though there could be any number of explanations for it, my imagination always runs away with me. If it doesn’t bother me and I seem open to discussion, why should it bother them? I wonder what they are thinking. Are they Michael Savage types? (Autism is NOT a hoax!) Do they pity me? (I prefer empathy). Do they think my son is broken? (He’s NOT. I am SO PROUD of him!) Are they not seeing my beautiful, smart, loving, energetic child for the Label? The truth is, there is still a huge stigma attached to “special needs”, and quite often a person’s reaction when they hear those words is negative.
I am well aware that people are uncomfortable with things they don’t understand. One way to remedy that problem is to ASK QUESTIONS. I also think in this politically correct world people are more likely to avoid certain subjects because they are afraid of saying something that could be construed as offensive. But the subject of special needs is one about which we cannot afford to keep silent. Special needs won’t go away just because you ignore them, and silence helps perpetuate prejudice and fear. Let’s break the taboo, and help people see that different isn’t bad, it’s just different. I encourage the reader to reach out to parents of children with special needs. They may be in great need of a friend, or a compassionate person to talk to. So many of these parents feel extremely isolated. This can be due to the strain of parenting a child with special needs as well as the stigma attached to it. So talk to them. Ask about their story. Ask about their child. You could even ask them about the weather! They like to talk about other subjects too, and may be starved for adult conversation. Don’t be afraid to respectfully ask questions about something you don’t understand. If you don’t know what to say, just say that! It’s okay, and it’s honest. Kind honesty is preferable to uncomfortable silence. But if you are still at a loss for words, I offer some possible suggestions:
Your child is beautiful.
What a loving, supportive family you have.
What sort of interests does your child have?
Sounds like you have had an interesting journey.
It seems that you have encountered blessings as well as struggles.
I am not very familiar with (Autism). Could you tell me more about it?
How great that you have found a group of people for support & encouragement.
And my personal favorite:
How can I help?
Jennifer Bittner has taken on varied roles during her life's journey. Her most recent include aspiring writer, stay-at-home-mom and special-needs advocate.
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