Wednesday, February 11, 2015

I do not speak for Kreed

There are some months with Kreed that you don't even know what hit you. We write about his progress and the direction of our life and then out of no where the rug can be pulled from you. That's not to say Kreed isn't progressing, because he is, but every day he is also suffering from debilitating headaches or migraines, low blood sugars, losing the ability to feel his legs and hands and even his bladder. He wakes up confused and obsessive and unsure even where he is or what he's doing. And we are left to figure out what is what because he is so complicated medically. Is it the sleep apnea causing the low blood sugar and headaches? Or is low blood sugar making his breathing worse? Or are the migraines causing both? Or is it an underlying mitochondrial disease causing all of it? What is the raised bump on his head that caused a bald spot and is that  causing the headaches? One specialist says one thing, another says another thing and most of the time they just send you to the next one.
Meanwhile every day we watch our sweet boy suffer. The only positive that has come out of some of this is his communication. Kreed is finding his voice more than ever. He is learning the language of pain. He is understanding the questions being asked and answering them to the best of his ability. It's why we know he's having migraines. It's why we know what hurts and what doesn't. That means the world to us. To know Kreed is finally communicating his symptoms. He is finding his voice. He is understanding. All of our modeling from the past few years is finally sinking in for him as he is going through this. And this is why I tell families never to give up and never stop trying to teach. Just because it isn't working now, doesn't mean they aren't listening. It will come.
Communicate EVERY WHERE. We use Kreed's device in every single situation of his life. Just as if he could use his natural voice. Even if a child doesn't use their device in every given situation right now, the opportunity to model the language appropriate for that situation is always there. If your child isn't speaking at that moment, then model in that moment instead. We have done this for Kreed and now we are seeing him finally choosing to use that language in those moments. This would not have been possible if we hadn't been modeling his language this whole time.
I wish more people would understand these devices are their voice, just as if they spoke from their mouth. A typical child who is acquiring language will have a model for that language from birth. People are speaking to them from birth and continue to throughout their life. This means they get thousands of hours of language modeled for them. AAC users are learning a different language which they do not get thousands of hours of modeling because the way they talk isn't the way they are being spoken to. This is why it is important to model either on a users AAC device or on another AAC device. When I speak to Kreed, I am often modeling on his device or our companion app on the ipad. He has to learn how to use HIS language from HIS device in every single given situation. I can't expect him to acquire language just from my spoken language- because that is not his language. When people ask me how Kreed is acquiring the language he is, I tell them it is because when he's not speaking, we are modeling.
In the beginning I did not realize this. There was very little information on devices on the internet and even fewer videos. So I didn't realize to model so much in the beginning, it was more teaching Kreed to request and answer questions. He got maybe a couple hours of modeling in a week if we were lucky. Maybe a month. As time went on I realized he wasn't being spoken too or shown language how other kids acquired language and that he needed to be shown in HIS language. The more we did this, the more Kreed learned. It's made me realize that both, having a language system that works for your child AND modeling make the biggest differences.

Throughout our day, just picture this: If I was going to ask Kreed a question or we are engaged in activities that require language, I expect him to answer as if he used his natural voice. If he doesn't know the language, he is shown the language. Multiple times, multiple ways. He is given choices. He is included in conversations and asked to participate. He has a VOICE and we expect him to use it. If he chooses not to, I then model the language. As a result, Kreed now gets hundreds of hours of modeling easily and practice in speaking in HIS language.
Now as a result, we are finally getting to hear his thoughts on what's wrong with his own body. It might not be how I experience it, it is how HE experiences. I can't speak for him. I have had to be his voice for years because he didn't have his own and we relied solely on behaviors. Now we rely on both his behaviors and HIS voice. While we ADVOCATE for him, I do not SPEAK for him. There is a difference. When we went into the doctor last for his broken foot, we are given a questionnaire to fill out on him and symptoms he is experiencing. Rather than fill it out on my own, I turned to Kreed and asked him every single symptom and if he was experiencing it. I can't say if he is having those symptoms for sure or not, but Kreed knows, so I asked him and expected him to answer and he did.

And that brings us full circle. Kreed has been acquiring language on his device at a much faster rate for several reasons: the device he uses is perfect for him, we model, model, model 24/7, we give him choices and we expect him to use his voice in every single situation just as if he was a teen who could speak from his mouth naturally. Now with his current medical crisis, he can actually assist in how he is feeling and giving us a road map. We rely on our medical tools at home (heart rate, blood pressure, blood sugar monitor), his behavior and his VOICE. We will continue to advocate for Kreed and for his health and well being and we will let his voice speak for himself.
While we are exhausted from keeping him safe while he rages and fights his way out of confusion, I always try to hold on to something. Something that gets us through the long days and nights and some kind of light that will lead us anywhere but here...and right now, for the first time, it's Kreed's own voice. We will find him answers and we will never stop fighting for him.


  1. So awesome that you've found a tool that is working on allowing Kreed the ability to communicate his feelings directly. That's so huge!

  2. Keep up the good work and tha you so much for sharing. We are seeing amazing progress in our Matthew and thank the LORD for you and your willingness to share, it gave us the push to get into AAC and Matthew brings his voice everywhere and I am trying to model more and more, this has been helpful for me to read and given me some more areas I can encourage him to communicated no model language. Than you so much for taking the time to post this! And I'm sorry things have been rough lately, trust me when I say I understand, we haven hose days too. *hugs* God is using your story to help others, even and sometimes especially in the hard days.

    1. I'm so happy we could play a part in Matthew finding his voice!

  3. I know it breaks your heart to watch him suffer… we parents just want to fix it. We are in different circumstances, but we too are dealing with the unknown and it is so frustrating.

  4. These are excellent recommendations and I am sharing them. I feel so sad when I hear how hard things have been for him and I want to hug him. I hug my son instead in solidarity. Keep up the amazing work Mom!

  5. Why did you take down your Facebook page?

  6. Why did you take down your Facebook page?

  7. Very worried about you and Kreed since you took down your FB page. Hoping you all are ok. Come back soon and let us know how you all are. Lots of us are worried about you/thinking about you.