Tuesday, September 20, 2016

We are Speechless

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?

Monday, September 12, 2016

Loving A Child Who Cannot Speak

I have a daughter and she is nonverbal. It is one of the most difficult portions of my life. When the tears fall it becomes a guessing game. When we miss the mark of the needs the tears become screams. The frustration that mounts for everyone is intense. That screaming can last for what feels like an eternity. What ends it? Her resignation. She has no choice but to quit. Nobody is answering her need. Because we don't even know what it is.

Imagine all of your needs every single day and now imagine that you can never, not even once, tell one single person what you need. What a horrifying thing. Those dreams where you are being chased and you are scared and you try to scream for help but nothing comes out of your throat? That is her world. And we, as her parents, watch on in sheer pain and frustration. Just sign it!!! Just try to say something. Anything.

And she does. Every single day this brave soul yells out, makes sounds, tries. Not a single day goes by when she doesn't try. And her trying? It shatters me. I am her Mama after all and mamas makes things better. Don't we? Is there anything else that better describes what we do? We kiss bruises and skinned knees. We are the makers of magic and all wounds are healed by our touch.

But Me? I.can't.fix.this. 

I can't wipe away this pain for her. And the sheer terror I face every day at the thought that she can't tell me what is wrong, who hurt her, what makes her happy and that I will get it wrong is something that breaks away pieces of me every single day. 

Am I failing? No. I am not. 

Is she failing? No. Never.

It is what it is.

But you need to know how this hurts. There are people in your life who are going through this never ending grief. And they have learned how to blend in. They know how to disappear when they can't blend in and after a few times you stop noticing their absence. But they don't. They wear the guilt of escaping on their shoulders. The isolation adds to their pain. But they simply cannot take one more raised eyebrow from a stranger. Every day they are at the brink of breaking. So give them grace. 

Imagine sending your child to school or church and hoping and praying that nothing goes wrong. Imagine the stress of knowing that if something is wrong you, as the mom, will never know it. Wrongs could be committed at any moment and you won't know. The immense stress of wondering if you have chosen the right people to trust is never ending. If you are not with your child every waking minute, then that stress is with you. 

We parents of children who are nonverbal? We have every single one of us had this happen. Someone was cruel to our child. Someone was unfeeling. Someone committed a serious wrong to our child. And we caught it. Not because our child told us, but because we are these hovering parents because we must be. And knowing that we caught it strikes terror in our souls just at the moment we begin to relax. There is no relaxing. Not for us. Not now, not ever. 

And then you return home and snuggle your child and pull them close and tell them you love them. And you know you will never hear those words. And while they will snuggle you back you also know that time is precious and even in the middle of that loving moment the groaning may begin. Maybe you hugged too hard? Maybe they are uncomfortable? And it begins yet again.

You start guessing and you start getting it wrong. And at the end of the day everyone is hoping that tomorrow will be the day. Please let tomorrow be the day a grunt becomes a vowel. Let the groan become a word. Let the slapping become a sign. 

And it doesn't. Because this is permanent. It isn't going to go away. This is permanent. 
This frustration.
This fear.
This aching.
This grief.
It is a cycle. But it is permanent. 

And she never quits. This brave one? She owns me heart and soul.

So we try again. We get up and face the day. We encourage the yelling. Speak to us! Try again!! We smile with the laughter. We cringe with the grimace and hold out for that elusive hope. We learn that communication is more than words. And we learn to grant ourselves and those around us grace. And we learn how to fight better and smarter. We learn to change the laws, change the world. We learn to stand against discrimination.  And above all we know that love takes many forms. Love requires no words. It is an intangible, nonverbal force. 

And intangible, nonverbal?
That's our playground, ya'll. We own this.
We've got this. 

**I am humbled by the response and the shares this post has received. Thank you to everyone sharing this post. If you would like to reach out please contact me at keh1027@gmail.com**