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Brotherly Love

Posted on April 7, 2014

10 Comments

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. 

I am such a strong advocate for what NCDB is creating through these modules.  I am a mother of two handsome, busy, outgoing little boys. My oldest, Liam, is very bright, social, curious and happens to be deaf-blind.  He became sick with bacterial meningitis when he was 2½ years old, which resulted in him losing his sight and hearing.  He is such a brave boy who has embraced his new world of deaf-blindness and is happy and thriving.  He has had to relearn how to communicate.  Although he used to talk with his voice, he now talks with his hands and has become a signing machine!  For the most part, he uses ASL (American Sign Language) expressively and tactile ASL receptively.  I believe that he has a right to be given every opportunity to be successful in his life and education.  I try to take every chance I can to learn all I can to support and be an advocate for my son.  I am thrilled with the work that is being done with these modules to help train interveners, which of course will benefit not only Liam but all children who are deaf-blind. 

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.

  

                                                                                            Liam and Finn riding on a dolley

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. 


                                                                   Liam and Finn riding in fire truck

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

Comments (10)

We are so proud to have you as a regular blogger and contributor on Paths to Literacy, Sandy! So many people have found your ideas and experiences to be extremely helpful and inspiring. For anyone who has not yet seen Sandy's posts, I highly recommend that you have a look at them at: http://www.pathstoliteracy.org/users/liamsmom We're so lucky to have your voice in the field!

Charlotte Cushman

Posted Apr 25, 2014 by Charlotte Cushman

Sandy, what a beautiful way of describing the natural way your children play and team up together as brothers! Having experienced myself the fun of looking at my children when they were very young playing together and somehow observing how accommodating they were with their brother in some of their games warms up your heart. Enjoy these precious moments and please continue sharing with us their adventures as they grow up!

Clara Berg

Posted Apr 9, 2014 by Clara Berg

Way to go Sandy and thanks for sharing these precious stories with our community!

Amy Parker

Posted Apr 8, 2014 by Amy Parker

Thanks you for posting this, Sandy. I always enjoy reading your perspective, and eagerly await the future stories of your little teammates in action.

Megan Mogan

Posted Apr 8, 2014 by Megan Mogan

Great story and thank you for sharing. The boys have such a typical sibling thing going on which made me smile too,. I love that the kindness and awareness has already begun, yes, something's must be taught, but the natural support, love and bond are already there. Agreed, Blessings!

Patti McGowan

Posted Apr 8, 2014 by Patti McGowan

Loved your story. I love that you show Finn and Liam that being deafblind is "Normal" . That you just do things a little differently. Finn will be surprised when he grows up and not everyone has a brother who is deafblind, he will feel bad for those other families and all they have missed!

Cindy Skiles

Posted Apr 8, 2014 by Cindy Skiles

Love it, Sandy! I hope I get to meet Liam and Finn one day soon. :)

Heather Withrow

Posted Apr 8, 2014 by Heather Withrow

Thanks for taking the time to share this incredible journey - wow!

D. Jay Gense

Posted Apr 8, 2014 by D. Jay Gense

It is so great to hear stories from parents. What a great one about sibling relationship! Thank you for sharing!

Shelby Morgan

Posted Apr 7, 2014 by Shelby Morgan

Thanks for this - and I just have to share a great quote I saw once printed on a button: NORMAL is a cycle on the washing machine! :-)

Barbara Purvis

Posted Apr 7, 2014 by Barbara Purvis

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