Monday, April 20, 2015

Broken

Sometimes I feel so broken. For Kreed. For what he goes through and faces. It's more than any one person should ever have to face. Living it every day with him, it's literally a fight for his life. His body is literally trying to kill him. Think about this: if we didn't intervene, he would fall unconscious, suffer a seizure and eventually his brain would shut down followed by his heart. We have found him semi conscious on a number of occasions when he's had a large drop and didn't know. We just had a feeling.
If we didn't feed him through the night or keep close eye on him during the day he is at high risk for coma. A normal waking blood sugar is between 80-110. Most people's bodies compensate and shut down for the night or the liver will convert and release the glucose necessary. Kreed's body does neither- insulin is continually released and his body cannot make more glucose. His body is literally killing him from the inside. 

Before waking every hour at night, we found him with blood sugars from 18-22. On average he would wake in the 40's still considered severe hypoglycemia. When it hits the 20's he is at risk for coma and for sure seizures. We now keep an emergency glucagon shot to give him if we ever find him unconscious. While most people find rest at night, we fight for Kreed's life every single night. 
As it is he was suffering from lows at night without us knowing and he had such severe rages he broke bones. Sometimes he begins to rage and we have no idea why- now we assume low blood sugar. But without sticking his finger every couple minutes we don't know! That's why the monitor is so important to us. Kreed is also going through puberty and is going through a surge of testosterone- this is also affecting his medical issues. All of this is happening inside his body and he doesn't have near enough communication to tell us. Except in behaviors. Rages. Yelling and screaming. All this for hours and hours in the day. And into the night. 

We live our life for kreed- we don't take vacations, we don't even really ever go out- he is so medically and behaviorally complicated.  A nurse could come for his medical but can't deal with his behaviors. A therapist can come for his behaviors but won't know his medical. It's so difficult. So we do the best we can. Some days we feel so broken and worn out. We just want to give Kreed the best possible life. The happiest life. So when he is so unhappy, I feel like we have done something so wrong and failed him. I always tell people I am not angry for this or our life and it's true- Kreed didn't ask for this life. He didn't do this on purpose. He is an innocent child who has been given a horrible hand in life and as his parents it's our responsibility to try and get him through it and to try and find his joy and happiness and find meaning in his own life. I am not angry for what we don't get to do- I'm angry at the life Kreed doesn't get to have but I know he wishes he could have. 
But most of all I just see his health taking a nose dive and I hold my breath, wondering what might come next, what part of his body will fail next. I don't know how much more he can take. I can't imagine living in his body and feeling what he feels and having no way to talk about it. Or having scan after scan and doctor after doctor and no answers. Just more meds which he is often allergic too. I can't believe how much he goes through and yet he can still give me such amazing smiles. And still loves me even when I have to restrain him to protect him. 

So right now we're exhausted and broken. But we don't show Kreed that. We try to remain strong. I feel horrible when I'm mad at Kreed or when he rages and lashes out at us and hurts us. Deep down inside I know he doesn't mean it. Most of the time I doubt he realizes it. 
do know one thing is for sure: we will not stop fighting for him ever. And when they ask how far love goes, when our job is done he will be the one who knows.


Saturday, March 28, 2015

Never stop fighting

There are so many stories contained in one child's journey. Most of the time we talk about how far Kreed's communication has come. From the days of constant rages and behaviors to now constant talking on his device. That journey has been miraculous. But Kreed is also on another journey, that of a medically fragile child. A medically fragile child that cannot tell us in detail how he feels inside. 
Recently he's been having daily rages. Sometimes they lasted all day. It was a level of violence we have never seen. Our sweet boy was replaced with an agitated teen who wanted to destroy everything in his path.  We watched foods. We watched his sleep, his meds, everything. We asked him on his device. We tried everything. We took him back to his doctors. Nothing came up. 
Then today. There it was. Suddenly so clear in front of me. He went from taking a medication for his hyperinsulinism (his body makes too much insulin) a few times a week to then times a day because his blood sugar level destabilized. We traced his rages back to the beginning of that change. He also began to have a rash we also couldn't figure out. We stopped the medication and for the most part he had a calm afternoon.  

He went from a rageful boy who kicked in the front windshield of our car to a calm boy watching his iPad and giggling. 

I will never get over the guilt I feel when I realize it was something we were doing to cause his rages and discomfort. At the same time, it was supposed to be a medication that saved his life and kept his blood sugars in an okay range rather than the panicked range. 

So now we are back to square one. His blood sugars are dropping and he can't have that medication. These are the things that keep me up at night. The worry. The checking his levels the whole night. Not an hour goes by that our life doesn't revolve around Kreed and his health. This is the life caring for a medically fragile child. 

I don't know what to even say. Sometimes we feel so lost. Sometimes we feel so inadequate. We don't have answers. Only more questions. I can't help him. I can't cure him. I can't tell him it will all be okay and have it be okay. His whole life is a struggle and that breaks my heart into a million little pieces. I just want to make his life better. Happy. 

Most of all, I just want him to be happy. That is all. He didn't choose any of this. He didn't know he was born like this with a body that's failed him his whole life. But I will make his life matter. I will give him a good life. A happy life, for as long as he is with us. I will never stop fighting for him. 

Sunday, March 22, 2015

Friendship Needs No Words

There was a video posted online recently that broke my heart. It made me realize why there are so many stories of kids being bullied or being made fun of, or even dying- because they had parents like the woman who said to parents of disabled kids "kill it, give it away or leave it at home." I had a few choice words for this woman. Then I thought about it. With all the stories about bullying and all the stories about the horrifying things the human race can do to each other, let me bring you another side. Where friendship needs no words. This is what should be shared 6,000+ times.

Meet Kreed, who is medically fragile, has autism and uses a device to communicate. And, meet Skyler, who has Usher's Syndrome (leading cause of deaf/blindness), is deaf, losing peripheral vision, has autism and currently does not have a means to effectively communicate.
Both boys have been underestimated their whole lives. People think surely they will never be able to have any kind of friendship. They said they won't understand. They don't have compassion. They don't understand how to love. People have also never understood them- why Kreed is so loud and makes the movements he does. And Skyler has faced challenges most people couldn’t dream about and they wonder why he makes the sounds he does and doesn’t listen and seems to go from one thing to the next. They have their reasons and now finally it seems they have found commonality in each other. Just because we don’t understand, doesn’t make their connection any less. Friendship doesn’t always need words. 

Here is the photo that proves them all wrong.
Skyler was a little unsure of the hotel surroundings. So I asked Kreed if he would help. Kreed walked over, grabbed Skyler's hand and they walked in together. Skyler trusted Kreed and Kreed knew Skyler needed his help. It was amazing to watch. Two boys the world has told would never accomplish things such as friendship and love and meaningful relationships. Or that they shouldn’t go in public because they don’t act the  way everyone else does. 

While the world watches kids hurt other kids with disabilities, or where adults make fun of those that are different or use hate speech...here are two boys who are profoundly affected but have found a way to interact without needing words. They FEEL. They CARE. They LOVE.


As a special needs parent, we only hope and pray that one day our child will find their "tribe." Someone they can be themselves with. Someone who doesn't mind their quirks. Someone who is just fine with exactly who they are. Kreed doesn't care when Skyler gets as close as possible to him, or when he reaches out to touch him. Skyler has no idea how loud Kreed is and so never gives off that annoyed feeling and he has realized Kreed is different and similar to himself. So he watches Kreed, follows Kreed and in general they want to be around each other. They don't need words to convey the comfort it is to find your tribe. They just know. And it is beautiful. I've never seen anything more beautiful in my life.

So when we say these kids have #nolimits, we mean it in every possible way. From communication, to cognitive ability to friendship and love. I don't care that's its taken 17 years for Kreed to find a friend, because this friendship was worth the wait. I can't wait to see what the future holds for these two.

And I thank them both for restoring hope and love back into the human race.

Tuesday, March 10, 2015

I'm fine.

I'm fine. The words spoken by most special needs parents. 

I'm fine. 

What we really mean is we are tired, sometimes broken, sometimes sad, sometimes tired, hurt, aching, or numb. Or we might be excited, shocked, cautiously optimistic. But we say fine because so much of the time it's the safest thing to say. 

Some days with Kreed are amazing and wonderful and hearing his voice is the greatest joy of our life. Other days my muscles ache from his rages and I'm numb to my feelings but deep down inside so incredibly sad for the suffering he must feel. Like I said- I'm fine. 

Some days I wish someone would finally look at me and say you are most definitely not fine. But then I know I will still lie through my teeth. Sometimes I ask myself why? Why do we say we're fine? I think it's because the alternative is too great, the emotions are too raw and powerful, and we feel as if we would drown in those emotions if we actually felt them. 

Not everyone talks about this side. When you've spent nights and days awake for weeks or months on end and can no longer even tell the difference between day and night or even if it's a week day or a week end. When you lay next to your child at night listening to them breathe and thankful for each breath they do take because you fear when you hear them struggling for breath. Or when you watch your child pound their head into the ground because it hurts so bad, and somehow in their body, hurting their head makes it better. Or when you're holding your son and the tears roll down his face into your hand while you are holding him and keeping him safe, knowing you would do anything in the world to alleviate their suffering. 

But I'm fine. 

I have to be fine. When people ask me how do you do it, the answer is simple. Because I do. Because what other choice do I have? He's my son. He is my heart. He is my soul. When your soul is suffering, you would do anything to make it better. So I search for answers, I research, I connect with doctors and I never stop until I know he feels better. Because he's not fine. He is suffering and he is telling me. His emotions are raw, his feelings are more real than I've ever seen and his voice rings true- he can't say he's fine when he's not. I have to be there for him. I have to help him. I have to be fine for him. If I break down, it means nothing will be solved for him. I can't do that to him. 

So I'm fine. 

We do what we can, when we can for ourselves. Five minutes here. Five minutes there. Or on calm nights we get snuggy and catch up on our DVR. We rejoice in those quiet moments and save up our strength for the storms we know will come. 

The thing about the storms though- they come, they rage, they blow us around and knock us against walls...and then the calm comes. We can breathe. We take time. We heal. We love. We strengthen ourselves for the next storm. 

Not everyone's experience is like ours, but I can tell you without a doubt, every special needs parent you meet has weathered storms you'll never know about, and lived to tell you another day that they are fine. 

Behind every fine is a story, a past, a strong heart and soul who has seen more and experienced more than most people will ever realize. 

Because we are fine. 

Sunday, February 15, 2015

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. 

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.

Saturday, January 17, 2015

Snapshots into Sophie's World

Last year I met a young woman through Facebook named Sophie. She lives in the UK and we live in the US. Although we are thousands of miles apart, Sophie has taught me far more than any therapist ever has about Kreed. Sophie uses a communication device as well and can type out her thoughts. She has given me insights into Kreed that has allowed me to teach him so much better and understand him so much better. Sophie's words can change the thinking of everyone who thinks that those who don't use their natural voice don't have something to say. She spent years unable to speak or be heard and so many ignored her. Even today, although she uses a device to communicate, people are quick to dismiss her. It's people like Sophie, and hopefully one day Kreed, that will finally make people realize that nonverbal doesn't mean anything other than they have a different way to communicate. 
I asked Sophie if she would write a bit about her experiences. So without further adieu, here are a few Snapshots into Sophie's World. 
Sensory overload 
Sensory overload is the worst feeling in the world!!! I get it when I see too many people walking past me or if I hear too many noises at one time. For example in a room of people talking my brain tunes into everyone else’s conversation and I struggle to filter the voices out and listen to the carer I am with it is so frustrating and I have to be re directed to listening to my carer by them saying my name or tapping me. When I get sensory overload it is like I have 100 buzzy bees in my head and my head hurts a lot and feels like it will go bang like a balloon it is the most uncomfortable thing ever!!! I have to try and bang my head on things to try and relieve the pressure in my head to try and stop the feeling. While I am experiencing sensory overload I find it very hard to talk or make any sentences as my speech just won’t come out as I want it too and I can’t make the words make sense. It really makes me feel frustrated and so upset and I get very cross about it and just want to block all noise out and close my eyes and have some peace and quiet. I don’t think anyone can ever truly understand how it feels to experience it but if you imagine you have 50 people trying to talk to you at one time and you need to answer every single one of them then maybe just maybe that is a little insight into what it feels like. 
Obsessions
I have a lot of obsessions one of them being time and numbers!! I like the numbers 0, 5 and 8 so when I used to wear a digital watch I wouldn't do anything unless it was on one of those numbers which caused many problems as u can imagine! So I now wear a watch which I can’t tell the time on which solves my need for wearing one on my wrist but also allows me not to be stuck for getting out of bed and having a drink all at certain times etc….There are many ongoing battles of obsessions which come into life daily such as wanting to always drink from a red or pink straw, drinking from the same cup, sitting in the same seat in restaurants and cafes’, standing in the same place at the gym the list is endless!! But my carer is really really good at working with me and we are overcoming a lot of hurdles to make not everyone’s life easier but most importantly mine! It’s a daily struggle and cracking a new obsession I find so so hard it makes me so twisted and frustrated inside and I throw my head back and close my eyes and usually self injure. I can imagine it’s frustrating for my carers and people to witness but it’s just the way I have to work the frustration out of my body before I then try and listen to my carer and understand why we need to do something and what the next step is. It sounds complicated I bet but believe me over all it is so much easier than just giving into all my obsessions some people learn the hard way! 
Communication app 
I first got a communication app in 2011 for my 21st birthday (Best present ever!!) The frustration was so high and daily meltdowns because I couldn't verbally tell my carers what was wrong or even join in a morning circle and say hello to my friends at my day service the list was endless! I could sign but not everyone could so my list was limited to who I could talk to…. I tried editing it as much as I could and tried using it but my current carer didn't share the enthusiasm then instead she thought it was a cool gadget and played around…. Not helpful when it was my token into being able to access this wild and wacky world! I on and off used it for the next 2 years until Christmas 2013 when I had enough of people guessing what I wanted and getting it wrong and I decided to throw myself into using my app cause I really wanted to be heard and it felt good to have a voice (I had waited long enough!) Since then I’ve never looked back my new carers threw themselves into the communication device as much as me if not more! My current carer always insists I use it and it does help so much I’m still learning to use it and try and not self injure its hard but I’m really trying! I have now just bought the Dynavox Compass app and I think that will be life changing for me because of the amount I will be able to say on it I have loved the free trial and have gained so much conversation on it and feel like I can have a real conversation using it and boy does that feel good! Don’t think I’ll ever go back to the days of no device now it’s too quiet and my carer always laughs when I say I’m quiet! 
I hope you have enjoyed hearing Sophie's thoughts and will really think about what it's like for your kiddos and what we can do to better support them! It's voices like Sophie's that will ultimately raise awareness and give others understanding.