I rambled off my usual reply that he was born deaf but has no real limitations. He is very happy at the arts school, we use ASL, a lot of folks don't but it works well for us.....blah, blah, blah. As I spoke about my son I was maybe showing a little pride ( I try not to but it may slip out a bit) I saw her eyes slightly well up. She looked very fragile all of the sudden and then she told me something I couldn't have guessed.
Her granddaughter is deaf. Her granddaughter is deaf and doesn't sign. She thought the school she was attending was teaching her to sign but she just found out it is an oral program. She uses hearing aides but still misses a lot. They don't have in depth conversations so when I gave her an example of what a conversation might look like with my son she became sad. Today my son wanted to debate health myths. He tells me research shows you don't need 8 glasses of water a day, TV does not kill brain cells and people shouldn't sleep too much. I don't imagine this woman would be able to do this with her grand daughter. She showed me an example of her conversations and I got a wee bit uncomfortable.
She tells me the teachers at her granddaughter's school suggested other placement since she is behind academically and not progressing with her speech. The director of the district program disagreed so she will not be moved. I felt the urgent desire to help this child. After giving grandma some ideas and information I found out the parents have little support and at times don't follow through. The more I listened the more helpless I felt. Grandma wants to learn to sign but the classes are expensive and her schedule doesn't fit. I told her they could move near the state school and get more services. She didn't respond. We moved for our kids so it seems natural for me but not all families have that luxury.
This child is 8 years old. Her family doesn't sign and she has "a few signs". She is behind academically and does not communicate in depth with others. Her family is not a tribe of advocates. I felt helpless knowing what I know. I wish I could turn back time and take my foot out of my mouth. I wish I would of just replied, "Yes, he is deaf".
Many of us in the Deaf community know of these children and likewise feel helpless. We believe we know what is needed and want to offer it right then and there...at 8 the child should be able to tell her parents what she did at school, why she likes/dislikes something, and be able to compare several items.
ReplyDeleteI feel like jumping up and storming the office of that district director, but that would never be allowed. Hopefully her parents do wake up to the options and choices available and are empowered to demand them. Meanwhile, parent groups need to organize and educate these officials.
oh pls dont be sorry u said what u said
ReplyDeletei first got introduced to ur blog when u wrote about Larry Fleischer's support and advocacy on your son's behalf
we must ALL invest in Deaf children everywhere
so who knows what will become of ur chance encounter with this grandma but it might make the world of difference
if u have any contact information - give it one more try - pay it forward
and maybe make a wee bit of difference in a young Deaf girl's life and the life of her family
re: the cost of ASL classes - if insurance companies can be made to cover hearing aids and CI - they should also cover ASL classes and DVDs
much cheaper
If you dont have any contact information - we will keep the child and her family in mind together that sooner than later she will be able to understand information and language without her hands tied behind her back
u didnt put ur foot in ur mouth - u just put it forward and that step forward can make all the difference
gandhi said no matter how insignificant what we do may seem - it is most significant that we do it
peace
patti
I'm so glad that you share so much with people -- never feel bad for doing so. That little spark of possibility might just flourish, becoming action (e.g., the sad might become mad which may become a grandmother pushing a bit more than usual). It's an awesome gift and comes from love.
ReplyDeleteNothing wrong with that!
I'm glad you didn't hold back. It's rough for that grandchild, but what else could you do for her besides raise her grandmother's expectations and hope that grandmother will act on that somehow?
ReplyDelete"We Never Landed in Holland" is awesome, by the way. Thank you for writing.
A friend of a friend directed me to your blog and I've found your journey fascinating. I'm an SLP (I mostly do hospital work) and am absolutely amazed at all the work you have gone through for your son. It breaks my heart to hear about that grandma's story. But kudos to you and your family for being so diligent in doing what is the very best for you and your family.
ReplyDeleteMy husband's sister is hard of hearing, and although she is very verbal (she didn't learn sign until she went to college), she still misses so much during conversation with family and hearing friends. My husband knows some sign, but I think he's the only one (out of 7 kids). I wonder how different his family would be if they had learned sign when they found out how hard of hearing she was. (It was discovered around 17 months.)
Thanks for sharing your journey. It's really good to hear your story. It's one that is worth being told.