I just got out of a meeting with Tiana's home visiting teacher and a parent representative from the Down Syndrome Association. During the meeting, I realize that I've somehow found myself on the other side of the fence when learning about something that is new to me, which is raising a child with Down Syndrome.
As a Deaf person, I've always felt strongly about how my Deaf child should be raised, in which language and in what environment. This comes from experience and from observing many different situations within and outside the community. I know there are two different approaches that people often argue that is best for the Deaf child. ASL as the primary language or following the Auditory-Verbal approach. Often, people who are not Deaf themselves will tell parents what is best for their Deaf child. There are some consequences to that because not every Deaf child can succeed at the AVT method (meaning full speech ability and high level of confidence in speaking environment), and the few that did become the "example" for rest of children to follow. Oftentimes, this is very frustrating because in doing this, the child who do not succeed at speech will spend most of his or her life working towards something that will just not happen (becoming a person with full hearing and speech ability). The point of this blog is not to argue which method/approach is the best but I'm sharing this perspective to explain why I suddenly "get it" from this other side of the fence.
As result of Tiana having Down Syndrome, there are many specialists and therapists involved in her life. Many of them have a very medical view of Down Syndrome and only see Down Syndrome through textbooks or at work. Not many of them actually lived with someone who had Down Syndrome. As a result, doctors will spend a majority of their time with me listing the negatives, things I need to watch for, or point out in what area Tiana is delayed in. This can be quite frustrating for me because I would leave the appointment feeling I did not do enough for Tiana or that no matter how Tiana is progressing, it would never be enough for them. But...
Today, a parent representative came from the Down Syndrome association to share resources available in my area and to just offer support. I couldn't believe how good the meeting felt, how refreshing it was to talk so positively about Tiana's progress and her future. Throughout the meeting, she played with Tiana, pointed out things she thought was amazing about Tiana, excitedly shared what she experienced with her own daughter at this age, and just really made sure I knew how welcome I was in this new community. She was so excited for us, she explained why having a child with Down Syndrome is special and she shared resources that were positive, refreshing and realistic.
Now, I get it when hearing parents of Deaf children share with me about how they felt after leaving AVT and meeting an Deaf adult, introducing ASL to their child and sending their child to a Deaf school or a Deaf program. I get it. It is so refreshing to just accept your child exactly as who s/he is and celebrating your child.
Acceptance. The word of the day.