You'll Be the One Who Knows

What's it like having a medically fragile child who at the same time is unable to tell you his symptoms or what it feels like in his body?

You hold your breath. You check him over every day for any sign of illness, injury and you hope you find nothing. When there is an injury or illness, you hold you breath. You treat it and hope it doesn't spread. You keep the dark thoughts in the back of your mind from entering your conscious mind. You pray the doctors are right in their diagnosis and are doing the right thing. 

You spend a lot of time researching. And hoping. Hoping something will add up. Hoping the symptoms will come together and make sense. 

I spend time teaching. Teaching the language of pain. Hoping he will understand and be able to start telling me. And knowing how hard it is to teach your child the different types of pain. And silently crying on the inside when he does tell you the pain he's in. Knowing every day he's having pounding headaches or it feels like a sharp knife as he tells you. 

Then you call doctors. You research. You try to put the pieces together. Treatment begins and you hold your breath. You hope it's the right thing. But you prepare for if it's not. 

Sometimes you have to protect your child instead of being able to hug and kiss them. This may be one of the hardest things. When my job just becomes protecting and keeping him from hurting himself because the pain inside himself is too great, I often weep at night for the choices we must make. And I just want to hug him and tell him it will be okay and I will make it better. Nothing breaks your heart more than watching them suffer and know you are helpless, other than to try to calm and keep searching for answers. 

It's one thing to be medically fragile, it's another thing to then not be able to tell you the symptoms. Everything is locked up inside their body and you have to play a behavior detective to figure out what the symptoms are and what the cause of those symptoms are. It's a vicious circle. Through it all, you hold your breath. More than anything you love. You love harder than most people can imagine because you never know what the next moment will bring. Will I have the dimple smile and tears of happiness or will I have the cries of pain? Nothing in this world prepares you for the agony inside your heart and the hope that your child will be free of pain and back to health. But to also realize this cycle will not end anytime soon. 

So you are often holding your breath. And loving. Loving harder than you ever thought imaginable. And when you hug, you hug deeper, stronger and longer than you knew was possible. And you live, live a fuller life than you ever imagined and cherish each moment your child is well and happy and smiling. 

And you say I love you. Always. As much as possible. So he will always know your love is there and never wavering. 

"When they ask how far love goes, when my job is done, you'll be the one who knows. " Dar Williams. 

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.