Tuesday, February 18, 2014

"Be Thankful He Can See"

Orion's in the sky!
We need to be ambassadors/public relations person for our loved ones. Especially when not everyone understands a kid who is Deafblind is still a kid.  Life always finds a way.  Our son laughs, plays, gets stubborn, makes silly faces, feeds himself by hand, gets mad, upsets trash bins, cries, stays up late playing, makes a happy mess regardless of the unconventional number of senses he has.

I love reading blogs.  I naturally come across individuals and family members sharing the positives, the downs, and their insight on their experiences.  Through these blogs the individual comes out into the foreground with the disability pushed into the background, perhaps since our individual has overcome them!

What spurred this post was reading what a fellow mom wrote on her blog, "Mommy Has Issues", about hearing her son repeat what his classmate said to him about his blind sister, Oli, who has autism, too.  It was so ignorant and insensitive.  Our job is not going to ever be over.  We are going to have to keep on teaching and teaching, finding the unreached depths in our community about our loved one(s), that they're people with the same rights, too.

A couple years ago I'd said this was our new normal.  It feels normal now, yep.  I don't know when and where we broke into our comfy running shoes of accepting challenges that is normal for our family.  I used to notice the stares during our family outings but now I just smile and put on my movie star sunglasses and go along my way.  It's probably Orion's amazing white hair that snaps heads his way and they notice his eyes (whether he's wearing his scleral shells, a.k.a. eye prosthetics, or not) on their double-take.  We rarely notice rude expressions, very rarely!

I love to explain to ASL signers (Deaf or hearing and all in between) about the needs and challenges of congenitally Deafblind kids.  It's spreading enlightenment and educating our supporters in our community around Orion.  It enables them to feel comfortable around him and know more about his communication ability and needs.

I wish I could do the same whenever  I am caught in an elevator or waiting in line when I notice hearing people checking Orion out.  I can't understand what they're speaking to me when they're obviously talking about Orion.  I do get some lines such as, "He's so cute", "I love his hair".  Thanks, I do agree with you on that!  Some of my replies are, "He's deaf and blind but still knows how to have fun", "He didn't hear you.  He's Deaf, too.  But you can rub his arm to say 'Hi'" (and most are still unsure what to do), or jokingly say, "I swear I didn't bleach his hair!"

Going off on a tangent away from Deafblind son public relations now….

It's a blessing to be Deaf, yep!  I mentioned in a past post it's heavenly to be able to pluck my hearing aid out of my ear and enter complete silence amid unsortable audible madness.  It's probably a good thing that I wouldn't hear or understand ignorant comments or questions regarding my son.  I do leave a huge benefit of the doubt that the speakers mean well, are admiring Orion and perhaps contemplating the obstacles Deafblind individuals face and circumvent.

When I do understand what a hearing individual has said, that is uncalled for, I do not lash back.  First  of all, it took a lot of energy to speech-read, figure out and understand.  All that computation took place, then I am shocked and the moment has passed and I've got "If you can't say anything nice, don't say anything at all" grounded onto my brain.  What's left is… I don't know.  I know I should've said something, but, ugh!

One grandmother was observing Orion and I playing at a children's museum one weekend back in January.  She approached me and was in awe of our interaction.  Something indicated to me that she did not understand Deafblind kids so I opened up a little on the topic of communication, real objects, tactile signs, and that he does understand what I'm communicating with him.  She eventually gets her grandson to come over.  Grandson doesn't know what's up, looks at his grandmother and at Orion on the floor next to me.  She speaks something to him then she turns to me and says in a happyish tone, "I want him to know he should be thankful he [grandson] can see."  What?!  Using Orion to teach an apparently ungrateful grandson? "Oh, I see."

Orion and I slipped over to a different exhibition where I explain to my dear hubby what was going on.  His reaction, I thought was appropriate and we were in a different area by then. ;)

You can't help how others think, how they chew on their thoughts.  It's personal.  If it's unfavorable it's a good thing it's staying in between their ears.  However, when it's said to your face, that's another thing. Ugh.  Digest it and do what you know with it (associated with the final step of digestion).

So, with all that challenge to communicate that's why I love to slip on my movie star sunglasses/horse blinders and whisk our family off onto the next fun family activity.


  1. Heather - My stock answer to anyone who insensitively or negatively commented on my child's autism, ADHD, learning disabilities, etc. was to say, "I'm sorry you feel that way." They could interpret that any way they liked - lol! - Aunt Liz

    1. Thank you, Aunt Liz! That is a good answer. I will keep that in mind!


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