October is Blindness Awareness Month – we have an official month, yay!
It seems like everyday is Blindness Awareness Day for us at the Stevens household. But it makes me super excited to know it is recognized in the month of October.
During this month, I wanted to share a little about blindness, LCA and Gavin. If you have a question for us, please let us know. Awareness is key, and I know there is a lot of curiosity about raising a child who is blind from a rare genetic condition. Leber’s Congenital Amaurosis (LCA) affects approximately 3,000 people nationwide. The above picture is from an album we have on our LCA page. If you’d like to see all of the other photos from families who have submitted their photos, please check them out here
. The kiddos sure are adorable! These are all children who have LCA.
The month of October is a special one for many reasons, and one of them being Gavin’s birthday month. His birthday was on October 2nd. He is now 5 years old. FIVE!
I still look at him and feel like he was a baby just yesterday, it’s a little surreal to know he’s this age. The morning of his birthday, I took him out to get his favorite bagel, and asked what he wanted to do before we had to go to school. His response? Go home and play with the gate! Yep, our side gate. He loves to open/close doors, and recently discovered the side gate, as I took him around our entire exterior of our home the other day. So, home we went, he took Aster for a walk, and then for 45 minutes, played with the gate.
Happy Birthday Gavin! He was a happy camper.
Gavin’s behavior, by asking to play with the gate, reminds me of how far we have come. When he was a toddler/baby, things were very different, yet the same. Gavin needed to do things again and again, he needed to swing around, and get the vestibular input. It led me to what I wanted to share for Blindness Awareness Month. Below is what we shared on our Facebook page
, with hopes to bring more understanding of the blind community, and some behavior that accompanies someone who is visually impaired.
Hope you can share our information and use hashtags #BlindnessAwarenessMonth #cureLCA on social media sites to help bring more awareness to blindness across the world. Some of which can be prevented and treated. But all should be understood.
Children who are blind often take part in repetitive behavior. They have to do things over and over, and over in order to get an understanding. Gavin would do this as a baby/toddler, but that behavior continues today. He will play with a door/gate for an extremely long time, and open and shut the door hundreds of times. Other ‘blindisms’ include rocking, head shaking, arm flapping and other socially unacceptable behaviors. Gavin’s early intervention, and intense occupational therapy helped slow down these behaviors. Introducing vestibular stimulation, and helping him with sensory awareness also helped Gavin.
He also went through a period where he was very tactile defensive, and didn’t want to touch anything for almost a year. Children who are blind, play differently than their sighted peers, and don’t hop from one toy to the next. They aren’t getting the feedback, or as much stimulation from the environment, as their sighted peers. If you see Gavin exhibiting in repetitive behavior, it’s him trying to just figure it all out. He can’t look at something and get a mental picture. He has to repeatedly get the feedback through sound and touch and even though it looks like the same exact pattern, he may be slightly altering what he is doing, to gauge the feedback, and understand the response.
Once he is in a familiar environment, or with a familiar object, the need to repeat things, cease. For example, he does enjoy opening and closing our front door, but does not need to do it as much as he needed to when we first moved into our new home. BUT, the gate.. the gate is new to him, so he wants to open and close it more. And when he gets a grasp of that, he will move on, etc. He will still want to open and close it, but not as much as when it’s new. We do have to redirect him, and try to move him onto something else, but I take it with a grain of salt, and let the kid get the input he is desiring, if the situation allows it. At first I was very wary of making sure he wasn’t stimming, etc. Now that I understand this is all typical behavior of children who are VI/blind, I let him get his door fix.
I also wanted to say thank you to everyone we meet in public, who are so gracious. I know I really shouldn’t say this, but it is the truth, and we try to be as honest as possible. But there are some days that I dread going to the store, because I know the stares we get, and even the whispers as we walk by. Some days, and most days, I really don’t mind… we are used to it. I really let it roll off. But, some days I get kind of angry, that my child is looked at like a walking show, and whispered about (even though I understand it may not be bad). At least smile, or wave… or for the love of humanity, take a moment and bend down and say hello to my son. He will love you forever. I see the people who stare, and it tears at me a little bit. I know you probably have never seen a young child with a cane, who is blind. But just smile as you look and say hi. I’m sure I’m speaking on behalf of many others. I think I get bothered, because there will be a day when he will be walking by himself, without me holding his hand. And I would love all of you that cross his path, to stop and say hello, and meet this incredible little boy, who has no idea you are there. I just never want him to think he is being stared at or talked about, even though I know it will happen – it’s just the mommy in me.
He will do his part once the introduction begins, I promise you that! We have worked on manners and public interaction. I promise you will be greeted with love and probably a hug.
Thank you to all of you who take the time to say hi. We love you for that.