Posted on April 7, 201410 Comments 0 Likes Like this post
It was an honor to participant in field-testing Modules 5-8 of the Open Hands, Open Access: Deaf-Blind Intervener Learning Modules (OHOA). After completing the 4 modules, I was asked to be part of a team that would actually help create one of the new OHOA modules. It is a privilege to be able to be part of a project I strongly believe in and support. What an amazing opportunity to meet experts in the field of deaf-blindness who are doing amazing, groundbreaking things for people who are deaf-blind and their families. What an amazing opportunity to make a difference.
That leads me to write next about Liam’s little brother Finn. He is seeing and hearing. He is almost 2 years old and talks non-stop. He is also learning to sign, right along with his big brother (and Mom and Dad!). He is strong willed like his brother, but has a sweet side and loves to help out. I was pregnant with Finn when Liam was sick with meningitis. It was a very difficult time for us, having a newly deaf-blind child and a newborn. It was a lot of adjusting for all of us. Our family came to the conclusion early on that things are going to be different, but they can still be great.
Our family may look “different” than “normal” families, but really, what is normal?? To us, signing to our kids is normal. Chasing around a busy preschooler who is deaf-blind is normal. When I think about the sibling dynamics between Finn and Liam, it makes me smile. Finn knows he needs to get out of the way when Liam is walking around the house because otherwise Liam will walk right over him since he can’t see (he learned that at a very young age!!). Liam always likes to know if his brother is sitting in the car seat next to him by reaching over to touch Finn’s hand. Finn knows he should give his brother a five so Liam knows he is there. They both get jealous of Mom’s attention. They push each other, they tattle on each other, they hug each other, they take each other’s toys, and they share. Finn helps me get things for Liam and then, in the next minute, might take a swat at him. They are brothers. This is our normal.
A big goal that my husband and I have is to teach the boys how to be kind to each other, how to interact together, and to love each other. Some days are easier than others (but that’s true with all siblings—seeing/hearing or not). It would only be fair to mention some of the challenges of having one child who is deaf-blind and one child who is not. I suffer from a lot of “mom guilt,” trying to find that perfect balance of making sure I spend just enough time with each of the boys. That can be hard to do, when in all reality, Liam is a lot of work and takes a lot of my attention. The best solution we have come up with so far is to make sure we include both boys, together, in all activities possible. Emphasize that we are a team. We need to help Liam and be patient. Another challenge has been trying to explain to Finn things such as, “Liam didn’t mean to run into you and knock you over—He can’t see!” Or, “Liam can’t hear you when you say stop. You have to sign it in his hand.” Those are hard concepts for a little brother to understand.
Along with the challenges are a lot of positives that give hope that things will improve as both the boys mature, learn and grow. Finn is getting old enough (and coordinated enough) for us to help him with tactile signing. My favorite example of Finn’s interest in signing is when I sing to Liam through signing. Wherever Finn is in the house, he will come running and want to do it too. Liam, being very patient, will hold onto Finn’s little hands while I help move Finn’s hands into a song so that he can sing with his brother. Another one of my favorite stories of the boys is about something they initiated all on their own. Liam, when he was younger, received a little Lightening McQueen Power Wheel car (it is slow−don’t worry!). Liam will drive it around the house sticking his arm out to push away objects he runs into or want me to hold one hand while he drives with the other. Finn thinks that if his brother is driving it is his cue to jump on the back of it, put his little arms around his brother, and let Liam drive him around the house. It makes us laugh. We love those moments where they can do something together without getting annoyed at each other.
I love the rare moments where I catch them working together as a team, creating some kind of mischief (raiding mom’s purse and all the contents inside, finding a box of crackers, sneaking the contents of the fridge, etc.). Albeit mischievous, it makes me smile. They are working together. They are a team.I love how Finn doesn’t see Liam as deaf-blind. He’s just his brother. I am excited to see how these two sweet little boys of ours grow up together. I’m excited to see how they learn how to communicate with each other, play together, be there for each other, and stick up for each other. There is such a bright future for both of them. I’m blessed