I'm fine.

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

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.

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. 

What's Possible

People said Kreed would never write, communicate, type, learn academics or really do anything he is currently doing. When Kreed was younger he was lost in chaos and destruction because everyone just saw a child that was the master of destruction. They saw a child hit, spit, kick, drop to the ground, bolt in a split second, clear entire counter tops, find secret food to eat, find secret nail polish to spread everywhere, refuse to sit in a child seat in the car and throw all his shoes or anything he could find at your head while driving, step in and smear poop, and basically reduce a room to shreds in five seconds flat. In all is those actions, no one was seeing what was possible. Or why he acted that way. 

It took at least five people to hold him down to do a simple x ray or any other medical procedure. He would bolt out of the room and pull everything out in a split second. Yet, seizure studies were done, blood drawn and IVIG began. None of it was easy. But all of it was worth it. 

Which brings me to now when I think of all Kreed has accomplished and what is now possible. Because we never gave up. We refused to see just a chaotic "non compliant" child. He was a child without a voice and those around him refused to believe he could. We felt differently.

Three years later Kreed has a voice and he uses it loud and proud. And it has made everything possible. He now understands why we do things like x rays, MRI's or why we go to the doctor. He doesn't try to bolt or leave and for the most part can be talked through everything. (Except a blood draw- that still takes three of us ha, but we still hope!). He has done more seizure studies and even sleep studies! Check out the wires he not only let them put on, but he SLEPT like that. 

Then they said he has to wear a bipap machine at night. Something even adults struggle with. Not only that, but an incredibly high pressure. And look at him now! He wears it at least six hours a night! It's possible! This child who won't even let you wipe his face with a napkin, wears a bipap mask. Because he has a voice and was allowed an opinion on which mask, followed social stories and practice rounds. None of it is easy. Every night I wake up at 2am to put his bipap machine on and again at 5am to make sure he kept it on. I run on very little sleep some nights! But it's worth it! He wears it and it helps him. This is what is possible. Even when people said it was impossible. 

An MRI goes like a dream, he doesn't fight the mask they put over him and everything goes smooth! 

Kreed was also a kid that bolted non stop- from the house, in the store, in the parking lot. Through a combination of his service dog and his device, he is my favorite person to shop with. He's engaged and he will go anywhere! While he still gets super hoppy haha, I'm happy that's the least of my worries. If he wants to hop through a store, so be it. But now he communicates when we are out- so instead of running to get what's in his head- he TELLS me and we have a conversation about it! 

He even sits patiently while we wait for food, and will even go and get the food himself. He is also learning to pay and order himself! No one thought this was possible.

Two years ago the school system Kreed was in said he would never write, didn't know numbers 1-5 and wouldn't progress much further. We said thanks but no thanks. We found out why he had difficulty writing- extensive nerve damage in his hands- so then we adapted his writing equipment and now he is finally learning to write. And typing is going along with this! He also recently demonstrated some more basic math skills, including addition! That's what's possible because we kept believing. See these videos here: Kreed Writing , Kreed doing math and Kreed doing writing and typing!

We document so much of Kreed because unfortunately autism families are often told what their child can't do, won't do or will never do. Or that their child is "non-compliant" when really they just haven't figured out how to get your child to cooperate. Kreed just wanted a voice. Now he LOVES "working", shopping, driving- you name it- all of the destruction from the past is exactly there- in the past 

Because we dared to defy expectations and instead give him none, just wings to fly. While our life revolves around Kreed, I don't regret it for one second. He's made me a far better person than I would have ever been. He didn't ask to be brought into this world and to be faced with such difficulties. So the least I can do is make it easier. And happier. Happiness must come first. Kreed will forever live a life I will never experience- he lived most his life without ever having a choice and even though he has a voice now, it's still hard for him to effectively communicate. He needs help to talk, dress, shower, go to the bathroom, get food or go anywhere. He is reliant on us. I can't imagine the helplessness he just sometimes feel to be trapped in a body racked with pain and sensations he can't describe to me or have a remedy for. He can only show us with his behavior or now some words on his device. But through it all, Kreed continues to amaze us and show us what's possible and how the human spirit can endure and overcome. 

Kreed will be 18 in this coming year and while that signifies independence for most of the population, I see it as an opportunity for Kreed to show the world what is possible past early intervention and that learning never ends. He will learn to write, type and communicate far beyond what anyone ever thought. 

From chaos and destruction to love, happiness and learning. Kreed continues to show me every day what is possible. We will never stop believing in him. We strive for progress not perfection and we have our whole life to teach and to learn. 

Kreed is my forever wingman and my right hand man. His unconditional love is incredible and his power to forgive when things are tough. My job is to make his life happy and that includes teaching him skills that will give him more independence. Kreed is so happy and proud when he can do things himself. We have our whole life to get there and I think he's done an amazing job so far. Most of all, Kreed has taught me and the world to think beyond what's possible and truly have no limits. 

A Mighty Heart

What does it mean to be mighty? It could be an adjective meaning having or being characterized as having superior power or strength. This definition fits Kreed. I've never met anyone stronger. The trials he faces on a daily basis I could never imagine and yet he can still face it with a smile like this: 

Or being mighty can mean of great size. Why then they must be referring to Kreed's mighty heart that beats strong in his chest (well and a little fast thanks to dysautonomia). Or maybe you mean it as an adverb- to a great degree, extremely. Well that is surely Kreed because he is a mighty courageous boy. 

Kreed is mighty in every sense of the word. These days Kreed smiles like this:

It amazes me. He has daily and constant pain due to his nerve damage, headaches, seizures, the bazillion times I have to stick him in the finger to take his blood sugar, the blood pooling in his legs etc etc. He has frequent drops in his blood sugar and he can't tell me when it happens; he can only show me in his behavior. 

Then let's not forget he's lived his whole life since he was three and a half not being able to speak or move his body how he wants. Can you imagine? You have to just exist and do what other people say and want you to do. Without a voice. Without a choice. Except to have behaviors to refuse choices. Then be labeled "non-compliant" because you have no voice. What a cruel joke. They just didn't realize how mighty Kreed was. 

Today Kreed uses his mighty voice as seen here when he let's us know just how it is:

We are lucky Kreed has found his voice with his Dynavox and I can't imagine if he had to continue to go this long without a voice. At the same time I can't believe we are able to have some conversations now. It's been a long and mighty road to get to here. Kreed has astounded me with his ability to adapt. He adapted when he didn't have a voice and he continues to adapt now that he has one. As Kreed continues to face incredible medical odds, I am always proud at how mighty he is in every way. He also loves. Mightily. And forgives. We can have a bad moment but in the next moment, he can be all kisses and moving on from there. He has taught me to live in the present and it's changed our life incredibly. We don't stay in anger or sadness. We live moment to moment and work on teaching him to communicate and live a better life. 

Our life is about making Kreed's life  happy. It's such a rocky and heart breaking road in so many ways. It's my privilege in life to raise Kreed and show the world what is possible when it seems everything is impossible. To show what a mighty heart our children have and how much they have to teach us. Which I guarantee is far more than we have to teach them. I'll say it again- Kreed has made me a far better person than I ever would have been. Period.

And when Kreed let us know that his body felt better and more free in a different city, we rose up and did the mighty thing and moved for him. He went from this:

To this:

And now he continues to amaze us with his strength and courage as he faces so many difficult medical issues. He faces hypothyroidism, epilepsy, an immune deficiency (CVID), metabolic disorder (SCAD), adrenal insufficiency, peripheral neuropathy, sleep apnea, POTS/dysautonomia, hyperinsulinism and possible mitochondrial disease with the mightiest heart I have ever seen. While he suffers so much, he also loves so much and enjoys his life on a much deeper level than you or I will ever know.

So when you think of the mighty- it is our kids who have to face so much and often do it with smiles like these: 

Every part of their life is Mighty. From their heart to their strength to their courage to their kindness to their innocence to their smiles in the face of so much adversity. 

Thankful

Originally published on The Mighty: http://themighty.com/2014/11/when-people-say-my-son-owes-his-life-to-me/ 

People have asked me what I’m thankful for and to even write about it. I’ve seen a lot of bloggers write about therapists or family members or even friends of their kids. But me? I’m thankful for Kreed.

He changed my life the moment he came into it. Little things ceased to matter and my whole world became about making his life better. It became about helping him find meaning in his own life, but at the same time, giving my life so much more meaning. He’s taught me about true struggle and true perseverance with his ability to smile and continue on his days, even when he’s in immense pain. Or we might have a yelling match, but he’ll still instantly cuddle with me because he understands unconditional love on a level far higher than any of us will ever understand. He understands the true meaning of love and that words or actions in hard moments have zero bearing on the actual love between two people.

Kreed taught me about what’s truly important in life. He’s taught me that it’s people who make the difference — not things. Kreed may like something or somewhere, but in the end it’s the people who make it all special for him.

I thank him for making me a better person. How many people can say that? He makes me want to be better, to work harder so he can have a life that’s easier for him or a life he wants. Because he has to work so much harder every day than I will ever have to. So he’s taught me to appreciate what I can do so much more and what I don’t have to face.

Our life is all about Kreed, but in living a life about him, he’s made me a far better person than I could have ever hoped to be. I’m kinder, more patient and I’m stronger and more courageous because I have to fight for his life too. I’ve learned to persevere and overcome whatever the world puts in front of us. I’m stubborn, and I never give up because it’s not just my life I’m fighting for but his too. I have a greater level of sympathy and empathy that I would have never possessed otherwise. I’ve learned to live in the moment and not have anxiety about the past or future because it’s impossible to do so when you are with someone 24/7 that lives and breathes only in the present. I can’t change the past and I don’t have a clue of what will come next, but I can breathe in the present, and set ourselves up for a better future.

Is our life hard? Yes — much more so than an average person’s life with a typical child. I’m never without Kreed except for brief moments of time and that’s how it will be for the rest of our lives. But knowing this has helped me push Kreed harder to learn to communicate more and be in public and interact with others so he can always go anywhere with me. I can’t do so many things other families are able to, but that’s OK, because it’s the people that matter and not the stuff I do or don’t get to do. 

Kreed has taught me I can be bitter about our life and live in anger and sadness or I can accept the life we have and make it the best possible life with what we’ve got. I can choose to find the joy and happiness in our moments and let go of the anger and sadness. Our life has been so much happier as a result.

So when people ask me what I’m thankful for… it’s Kreed. Always has been and always will be. I would not be the person I am today without him and I certainly wouldn’t be this better version of myself. Kreed made me a better person. Period. Many people say Kreed owes his life to me, but what so many other people don’t realize is that I owe my life to him.