Monday, August 29, 2016

Social Media, Usher and the Big Meanie

I decided it's time I start a blog. Not that I am particularly interesting or that I have very much to share with you but because I have this amazing little person that came into my life and changed everything, my eight-year-old who is deaf blind. He has Usher Syndrome. 

So, in thinking about what I would like to blog about, I figured I should probably start with who can I go to to ask questions. So, with Facebook being what it is today, you can connect to somebody in Israel and with someone down the street. It's an amazing tool and invaluable resource when you’re dealing with something that is uncommon. 

I sat down and started writing the names of people I knew who were deaf, blind or deaf blind. I included parents of a deaf child; a blind child; folks with a blind or deaf spouse and so on. I figured I’d get maybe 10-11 names instead; I got to 46 and that's only because I stopped counting. I may have something to say in a blog after all. After all, if I don’t always have the words I am fairly certain I may know a friend or two who has a prospective that needs sharing. 

When I started our nonprofit, I was a little aimless that's for sure. Well-intentioned; but aimless. Our mission has become refined over the years but our focus has always been on independence. 

I see Henry and I see how dependent he could be on me or how dependent I could allow him to be. But, unlike my first son who is sighted and hearing, and who I doted on like a true helicopter mom, I knew I needed to change up my parenting M-O. 

My husband and I have very different parenting styles. I am the one who is feared. I am the “uh-oh-don’t-tell-her” parent. Philip, well, I equate him with the ice-cream truck turning onto your street. “Daddy’s home? Daddy’s home! Oh thank god Daddy’s home!” The kids get so amped up to see him because he embodies the most amazing of everything a human being has to offer. He has patience, loves to play, has boundless energy and rarely says no. He’s is the absolutely perfect parent for 2 boys!

I knew that if Henry was going to be independent I was going to have to be the one to make it happen. Today, Henry is fiercely independent. Mind you, I truly wanted to coddle Henry as well but I knew I was dealing with a different child. I knew I needed to buck up and give him a coat of armor 3 feet thick. His mantra became “I’m fine.”

Looking back at this list of folks that I know who are experiencing what I'm experiencing I realized I have something to say. I've created and encouraged a vibrant, eager, independent, outgoing young man when I could've curled into a ball and wished it all away. Like my 46 odd friends; I took the bull by the horn. I refused to be told no. I refused to hear he's not going to receive that service. And I refused the idea that there were certain things he cannot do. 

I have a funny story. 

Since Henry was an infant I would always sign “You're fine. You're fine.” So it became Henry's mantra he would always say he's fine. So I guess he was about four and he started learning how to ride a scooter (bad mom moment) and he fell off the scooter while rolling downhill at a pretty good clip. He scraped up his elbows and knees pretty good. My neighbor was outside at the time and she about had a heart attack and, I will admit, I did make a small herculean leap towards him but slowed my roll. 

Henry? Well he jumped up, and signed “I'm fine” emphatically. He had blood running down his shins. He had a fairly large piece of skin hanging from his elbow. His scooter was overturned and his helmet was askew.

He brushed his hands off on his pants and said “I'm fine. I'm fine.” He adjusted his helmet, got back on his scooter and went on his merry way. The funny thing here is he was not fine. He needed tending to; he was bleeding profusely. 

That, is my proudest mom moment because my deaf blind child picked himself up dusted himself off and kept right on going.

I eventually did have to tell him I needed to clean up his elbows and knees. He acquiesced begrudgingly…just as his mom taught him. 

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