When I wrote my post on Loving a Child Who Cannot Speak I had just exited a really, truly traumatizing week of placing our daughter in a local Kindergarten class and when I need to vent and process I write. So, I wrote.
And maybe it was because the new tv show Speechless landed on the same week. I don't know. But the post blew up. Ya'll I'm just a regular, every day person, introverted and content in my little life. So when I checked my post stats, which I rarely even do, I ran down to my husband and said "I'm bad at math. Is this really saying over 400,000 views? Maybe Blogger messed up its stats."
And then I went...
"Wait. People read my story? People outside of my little adoption community? Crap. Now everyone knows my struggles. Did someone comment 'Blimey'? They're not from the U.S!
What have I done???"
It's all good. I ended up laughing and answering over one hundred comments and emails and feeling a whole lot more normal in my every day life, a lot less alone. All of you helped me feel like one of you. Thank you for reaching out to me. I found a community of moms who knows exactly what my pain feels like. You empowered me to use my voice.
So I processed all week long. What should I do? Because I'm that girl who still dreams of this world changing. What if my voice can help change it?
How about a weekly post on living the "Speechless" life? Feel free to join me. Let's tell the world how this is. This is our life and being silent and hiding doesn't really change the world. Anyone want to spark a change with me?
Let's do this!
Here we go:
I had so many lovely people offer advice for our family. I appreciate it and I am researching many things that were mentioned to me. The thing is, we are still learning about our sweet daughter. We have not had the honor of being her mom and dad since her birth. She has been with us a short period of her life. Much trauma, abuse and neglect have marked her life. Please don't believe we are not trying to help her find a voice, a way to communicate. We are coming from behind and working to catch up. In fact, when we were given the privilege of becoming her parents we did not have all the facts. We did not know she could not talk until the moment she literally collapsed in our arms and we were left trying to figure out what was going on. We had 24 hours to give her back or move forward. I wrote about those hours for the blog No Hands But Ours. It has taken us a while to realize that she in fact is nonverbal.
To those of you who have walked this road I know you get this. It takes time for a parent to come to grips with reality. We hope for so long, we try so many things before the grief sets in and we release our dreams and fight for new dreams. It's a process and I choose to give myself grace for the time it took us to come around and see that our sweet girl is not talking.
Now we are looking for ways to help her communicate. We tried sign language and while we haven't 100% given up on that we have realized she is telling us "no" to that method at this point in time. We are working with the school on finding a device that works for her. It's a layered complication because she has multiple impairments, not the least of which is being blind. Many devices require vision. Like in the show Speechless, many have the options of screens and choosing words. At this point, we don't have that. But we aren't quitting. We will find the one thing that she chooses for her communication. We won't stop until she can communicate her needs to us. So, I ask for your grace and understanding while we figure this out.
In the show Maya is a great depiction of what all of us become as parents of kids with special needs. Sure, it's exaggerated for tv and entertainment. Ahem, but maybe not by much. Her crash course in human dignity may or may not have resembled something I just said the other day. "Isn't it basic humanity to know not to place a young child in an 'extended time out' for hours of her day? Or to use a room that is not ventilated like the General Education rooms or air conditioned for that time out?"
Schools may have lawyers and loopholes.
My daughter has me.
Humans take note:
Dignity and common sense can go a long way.
Every day we wake up and we go to battle for our rights, for her rights.
Do you realize how that sounds? Your rights are given to you each morning. Ours are not. To have the exact same rights that you are given we have to beg, we have to file lawsuits, we have to be labeled as the "crazy mom."
And so it goes. Day in and day out.
Our girl never quits and she teaches us to be brave and resilient.
We don't quit.
I'll be posting regularly about this life with a child who is nonverbal. So check back. I'd love to tell you that every "Thursday" will be the post, but well.....special needs are unpredictable. I'm working on that.
Be brave today, Friends.
How about we change the world together?
Go, Katie, go! Change the world! If anyone can, it's you. I love the idea of a weekly post on living with Speechlessness. -- On a more practical note, our TVI recommended these buttons that we could pre-record with phrases ("I'm hungry" or whatever), and our son could press the button to speak. The AAC programs, as you pointed out, are hard for a child with VI and basically impossible for a blind child. We haven't tried it yet, but I think she meant something like this: http://www.tts-group.co.uk/talking-point-recordable-buttons/1002060.html Query how the child carries around the buttons ... It's an idea, though.
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