What I hope you know

Daddy,

So much has changed since you have been gone. I can’t even begin to tell you how many times I have wanted to call you to ask for your advice, or to hear you laugh at the shenanigans I have gotten myself into, maybe to get some sense knocked into me, but mostly to hear you say that you love me and that you support me. It is so hard not knowing. For the sake of making myself feel like life is slightly more normal than it is, I decided to write you this letter. Even though I know you aren’t here, I still feel the compulsion to tell you about all of the incredible, life changing things that have happened in the four months that you have been gone.  How has it only been four months? I’m so scared of time passing, Dad; I want to stay as close to when you were alive for as long as I can—I’m not ready to forget things about you. I can’t tell you how much I wish this life update could be a conversation instead of a letter—but as you always taught me, I just have to do the best with what I have.

As you can imagine things got pretty crazy after you died. I don’t really want to go into detail about everything that happened with Matty because I know you know Matt better than anyone—so you know what Mom, Steph and I went through with him.  From the months that Matt was still home, there is only one thing I want you to know, and that is how much love for you I saw in him. I can’t imagine it was easy for you to put everything you had into caring for Matt and to not get that “appreciated” feeling in return. But I saw how much he loved you and how much he missed you. I hope you know how much he misses you. Finding Matt a home was a difficult task, but we did it. His home is not exactly what you might want for him; but I can tell you that there are a few stand-out people there that truly care for him and that is what eases my mind. It isn’t perfect, but it is as good as a temporary situation can be and I am so thankful for that. I truly think that someday I will be able to help find somewhere even better; somewhere with a staff that challenges him as much as he challenges them, with people who see him as the beautiful human he is, who recognize his intelligence and are passionate about understanding him. While I don’t feel that his current home has any of these things to offer, I want you to know that just by being there he has grown. He is so much like you, in that even if he is surrounded by people who don’t understand him, he finds a way to grow. I really feel that if we can find somewhere that will actually help him, he will simply thrive. But I know you have always known that.

You would truly be so proud of him.

You would be so proud of everyone, Dad. Mom has continually amazed me, I wish you could see her now. During those months that Matt was home and you were not, she exuded an energy that I can’t describe. She was exactly what Steph, Matt and I needed. In a time when she could have had so much hate and depression she gave us so much strength. After Steph went back to Madison and Matt was in his group home, I stayed with her for about another month. In that month we landscaped the front yard, took out the carpet upstairs and downstairs and then put in all new floors—ALL BY OURSELVES. But, you know how Mom is, when she gets an idea in her head there are not many things that can stop her. She did even more work after I left—the backyard is like an oasis now. While I’m sure that if you had been there you would have been laughing at us the whole time because we really had no idea what we were doing, I also think you would have been really proud of the end product. And it was all spearheaded by Mom.

You would be so proud of her.

Steph is doing everything you could have ever wanted for her (besides the fact that she is moving to Chicago 😉 hahaha, just kidding). She is kicking this PhD in the ass. I have been seeing so much of you in her…. I see you in her insane intelligence and her persistence and most of all in her determination. She is going to do her thesis defense the day before we go to The Boundary Waters and she has already accepted a post-doc at Northwestern. Dad, I can’t tell you how amazed by her I am every day. I feel like in the past few months there has been a change in her. When you died she wrote about how you would always advocate for us to take every tragedy in stride—to do our best to keep going and to accept what has happened and to eventually let it go. She has truly done this. There is a calmness about her that I don’t think I have ever seen—as if she is finally seeing herself the way you saw her all along; the beautiful, insightful loving woman that she is. She is going to continue to grow and love herself and I know that

You would be so proud of her.

Then there is me. I kind of mentally checked out after you died. In the immediate weeks after you passed I couldn’t think straight. I got a small taste of what life was like for you; just a series of things that happened in between different meltdowns. It was so hard knowing that at any moment when Matt started screaming, I would be the one to put myself in front of him and not you. I know you would have never wanted me to do what you did, but I’m glad I got to see a part of your life that you never allowed me to see. I tried so hard to replicate what you did; I tried to be calm, but every time I looked at him all I saw was his confusion as to why it was me and not you. So I checked out—but looking back, I think I experienced a fundamental change during that time. When Matt got settled in his group home I started to feel a little bit more like myself—but it made your absence that much more obvious. When I got back to Minneapolis the fact that I was living a life that wasn’t mine anymore started to become evident. I wasn’t happy. Of course I wasn’t happy for the obvious reasons, but even beyond being depressed about you not being here, I was not happy about the life that I was living. And then I went to work at the autism camp I had been telling you about all year—Camp Hand in Hand. I wanted to call you every day I was at that camp because I saw so much of you and Matt there. I wanted to tell you how much you did right; how much you figured out all on your own and I mostly wanted to tell you how proud of you I was. I wanted you to meet every single incredible person I met—the other counselors, the staff, the campers—everyone. I wanted you to be able to experience the incredible feeling of being around people who actually get it or at least fucking try. I watched you attempt to relate to so many people about Matt and I know you never did; I never did either until this camp. I wish so much that you could have known about this place; there were times when I even imagined what it would have been like for you to bring Matt there—I think it would have made you so happy. I spent almost every night there by myself, usually situated in a good place to look at the stars. It reminded me of the summer nights we would spend on the porch talking, which made it easier to be alone. I felt like you were with me when I realized I needed to take my life in a different direction from what I had planned; something that seemed so far out of the question for so long. I felt you giving me the insight to look at my life as a 23 year old, I felt you telling me to follow my gut and I felt you telling me that everything was going to be OK, even if it meant I was going  to go through life alone for a while. In a moment that should have scared me, I felt you giving me courage and acceptance. And after everything was said and done, I felt like you were with me as a passion for life crept back inside of me. I have reclaimed my life in a way that I was not expecting to and I hope in a way that would make you proud.

You always advocated for Mom, Matt, Steph and I to push ourselves—to constantly strive for the best version of ourselves. I think what I want you to understand the most from this letter is that your death has pushed every single one of us to do things that we didn’t think we could do before. You were the catalyst that made each of us grow in ways we didn’t know were possible.  I don’t know how, but so many of the events that followed your death embodied everything you could have wanted for us when you were alive. Realizing this makes me feel closer to you, as if your loving energy is now a part of every decision I make– because if I hadn’t lost you, I wouldn’t have rediscovered this part of myself. I will always miss the solidarity that an actual conversation with you would give me, but I know now that you are in everything I do—which makes the pain of missing your physical presence a little easier to bear.

I will never be able to thank you enough for being the man that you were.

I love you so much.
Emy

Searching for Signs After Death

Nighttime is the most difficult for some reason. When it is dark and Matt is calm, I think about the void of my dad’s presence. When there are no other distractions, I feel his absence. And that’s when the thoughts come rolling in. What do I really think about my dad’s death? Where has his soul gone? Is it anywhere? When someone so dear to you dies so suddenly and it seems far before “his time” what are you supposed to believe? Up until this point I considered myself to be an optimist when it came to my beliefs on death. I wouldn’t have labeled myself as religious– I didn’t believe in a heaven per se, but I believed that when someone died their “soul” was released into the universe. I believed that their energy became a part of everything –they weren’t in heaven but they were at rest and still with their loved ones in some way.

But I had never experienced real loss before.

My beliefs on death combined with having to hear the same phrases over and over again catapulted me into a fervent search for signs: Signs that he is sending us in his death, signs from his past showing that this was inevitable, signs that this hurt could somehow be a part of some plan that is far too big for my small human brain to comprehend. There are so many signs.

While I was in undergrad I rarely called home—once every few weeks at most. But once I moved to Minneapolis for grad school, which were the last few months of my dad’s life, I called every day. Every day. I can’t tell you why.

In the last months of my dad’s life he got a Facebook. He was so against all things millennial and all things that promote the demise of face to face interaction, but he got one. And he reconnected with so many old friends that he never would have if he had not made it on a whim one night.

The weekend before he died he left my mom alone with Matt for an entire weekend—something he hadn’t done in years—so he could finally come see my apartment in Minneapolis. He had been trying to come visit me since I moved there in August and it was never the right time and then my car randomly broke and he had to come to help me buy a new one and I saw him, I saw him the week before he died when prior to this I would go months without seeing him. My car broke so that I could see my dad one last time, right?

My sister recently started dating someone who lives in Chicago and when she would drive from Madison to visit him she would always stop home. She stopped home the night before he died.

The last thing he said to me was in a text message hours before he passed: “Goodnight sweet princess”

There has to be a reason behind the pain.

After he died more signs came. Birds hovering outside of our windows, objects falling, weather being incredibly unpredictable. I can hear the disdain in others’ voices as I say, “something else weird happened”. I can feel myself reaching for anything that might tell me that he is somehow still here. I’m grasping for signs like someone who is drowning gasps for air because how could he just be gone?

Then the dark thought that has been waiting for me to stop trying to make sense of the senseless takes over. He is gone. No rhyme or reason, no signs, no plan, nothing; he is just gone.

I fight this thought because he was just here, his boisterous laugh ringing through our home, his life advice, his wisdom and experiences; how can an entire life just cease to exist? As I write this, it all feels so futile because I realize that death is so much a part of life but I’m only 23 and he was only 59. I thought I had so much more time with my mentor, role model and best friend— it just doesn’t feel natural. I still needed him. I wanted him to be there for so many things.

I am now forced to ask myself, do I keep looking for signs or do I remember the past fondly and accept that I will never feel his presence again?

As I write this there is a part of me that feels his embrace. Honestly, I am aware that this feeling could be one of the incredible things that the human brain is capable of creating in times of loss, but for tonight, I am going to choose to embrace back.

The Gift of Matty

It has been almost three weeks since my dad died and I still haven’t fully comprehended that he is gone. I haven’t been able to stop thinking about what my dad would be feeling about this situation. How would he feel about the decisions we have to make about where to place Matthew (if we are lucky enough to have a choice), how would he feel about my decision to tell our story so freely? My dad rarely opened up about his life with Matt and I believe he kept his experiences to himself for several reasons. I think that the main reason was that he never wanted anyone to view him as anything more than a father doing all that he could for his child. He would have hated all of this attention praising him for something that he felt was just part of being a dad. I suspect he didn’t open up about the difficulty of being Matt’s dad because he didn’t view it as a difficulty to begin with. My father felt that the challenges that life presents to us are placed there to teach us lessons. There is a lesson to be learned from each and every hardship given to us, or as Richard Bach said in his book Illusions, “There is no such thing as a problem without a gift for you in its hands. You seek problems because you need their gifts.”

Because I know that this is how my dad viewed his life, I feel uneasy about how I have chosen to describe Matt’s presence in our lives. I have decided that spreading awareness of the challenges that exist across the spectrum is something I need to do and I can do this by sharing our story, but I can’t in good conscious share only one side of who Matt is. I have opened up about the hardships that Matt’s autism has presented us with, but I have yet to show a side that so many have not had the privilege to experience. I made this video to show others another side of Matt and to remind myself in this difficult time that every challenge presented has a gift in its hands.

 

Why I am not Lighting it Up Blue

I could cite countless sources stating all of the ways in which several organizations in the name of autism do not actually advocate for those with autism but I am simply going state the facts I have surrounding the difficulty my own family has had in finding help for my brother. The complications we have encountered embodies everything wrong with how these organizations are run.
Here are the facts I do have:

When my parents were informed of my brother’s diagnosis they had several options. It was of the utmost importance to my dad that we remain a family. Above all else, we needed to understand each other and be a part of each other’s lives. I don’t think he anticipated how difficult the decision he made for us would be in the future, but I want to believe that even if he knew how hard it would be, he would not have changed a single thing.

My dad didn’t anticipate that Matt would also be diagnosed with something called “explosive behavioral disorder” meaning his son randomly lost control of his emotions and could therefore become a threat to the rest of his family. He kept trying. He never once gave up. Which is far more than I can say about any other person whose job it was to help my brother.

Matt had spectacular resources until he was about nine years old and then the resources started dwindling at an alarming rate.

I wrote a paper in high school briefly describing the experiences my family and I have had with attempting to find Matt help. This is what I had to say when I was 17,

Third Grade Essay Topic Sentence (9 years old):

I think my relative of the year should be my borther Matt. He’s autistic and heres why I nominate him. First, he is very smart. Second, he won an award already. Finaly, he always laughs.

I had not seen him in almost two months. I walked down the stairs into my basement and there he was. I had forgotten what it was like to see him sitting outside my door, laughing at Disney cartoons on his computer. I stood there feeling and thinking a million different things at once. How had I forgotten that he was going to be home? I stood there staring at my brother. I had missed his smile and his laugh. I had missed the way he said “McDonalds” under his breath. I had missed waking up to his fights with my dad in the middle of the night. I had missed how he would greet me as I was attempting to sneak into my house one hour after I was supposed to be home for curfew. I love my brother and I missed him more than I could ever begin to say.

2006 Journal Entry (13 years old):

In my last entry I forgot to put that, I, Emily Knezz, actually punched someone in the face (and was for real pissed) for the first time on the 16th of August. HA! A stupid guy asked me if my brother had a cage. He doesn’t know what he is talking about.

2006 was a rough year for Matt. My family had been seeing so many different doctors for advice on what exactly we should be doing with him. As he got bigger and stronger, his tantrums became more frequent and more threatening. Around 2004 Matthew was put on a sizeable cocktail of pharmaceuticals, he was eight at the time.  Yet, it seemed this was just creating more problems. Different doctors kept upping his doses, or cutting them in half or trying completely new drugs.  In the time of this pharmaceutical mess, Matt’s meltdowns were not getting better; they were getting worse.

Matt’s violence was beginning to interfere with his ability to stay in school. He bit another child in his class when he was in the 6th grade and was asked to leave.

My parents didn’t know what to do.

Their son was becoming a threat to their daughters, and they were desperate.

My dad created a restraint that was necessary to keep Matt from biting or pinching while my dad attempted to talk him down from his violent outbursts.

Matt was left without an education for several months. In the spring of 2006 two women from the school he was previously asked to leave came into our home to evaluate whether my brother was ready to come back to school. They saw the restraint my father had created and he specifically asked the two women what they had thought of it– was it too much? “No.” they answered reassuringly. Two days later, I was confused when I saw an unfamiliar man in an unfamiliar car in my driveway. I walked quickly from my bus stop to my house. I opened my front door to hear my mother in the kitchen, sobbing.

My parents had been waiting for so long for anyone who was willing to help my brother. At the height of their despair, the people who were supposed to be helping my parents find the best solution for Matt gave up on him in the worst way possible. The Department of Children and Family Services came to our house, because two women from a school for autistic children thought my parents were abusive.

My parents only wanted was what was best for Matt and because of educators that don’t know what they are doing, my family was lost now more than ever.

2007 Journal Entry (14 years old):

Matt is the reason my family is separated right now. My mom and I just moved away from Lockport but Matt got a good teacher in Lockport before we left, so my dad is staying with him there for a while. There is actually no option for schooling for him here in Geneseo… Why? Why is there nowhere, anywhere that we can go that will reach out a hand to help my brother? All there is here is a school where he doesn’t belong. He deserves to get the best schooling available, but we can’t afford to send him.

Geneseo has nothing to offer.

2010 Journal Entry (17 years old):

 “Matt is going to be leaving by the end of this week.” As I heard this statement coming from my father’s mouth, I simply stared at my birthday dinner. I had been waiting to hear that for more than a year, but as he said it I just looked at Matt smiling at me across the table and it was just too real. I had been fighting for Matt to be sent to go to school for so long, coming up with arguments that would convince my dad to just let go. It had been so long that I was convinced it wasn’t going to happen. Now that that time was here, it was real, I didn’t want to let go either. It’s funny how you can want something so much, for so long, and then when it’s there you don’t want it anymore. The last few days that Matty was home I couldn’t seem to make up my mind. One moment he was melting down so terribly that my dad needed to tie him up with ropes and a sleeping bag, and then the next moment he was outside my room laughing hysterically at a Disney cartoon. I felt there was no way I could let him leave.

Matt went two entire years without any education whatsoever.  After one year of Matt being at home with my dad in Geneseo with no leads to anything, the option of sending Matt away to receive an education was proposed to my family.

2001 Diary Entry (8 years old):

Today was scary. Matt was really really bad. Mom and me had to shut the doors of the dining room and go under the table, mom and me cried for a while. After dad got home we talked in my room and she said that if things get bad enough, Matt will have to go away. I talked to Stephy about it in the bathroom and we felt bad saying that that might be ok with us.

The decision to send Matt to a school in Wisconsin would ultimately be made by my father. For two years, my family was in no man’s land, waiting for him to make up his mind. It was easy for me to say “Matt needs to go away to school; it is what is best for him.” It was easy for me to cast blame on my dad. It was easy for me to let go of Matt inside my head. None of this was easy for my dad. The past fifteen years of his life were spent working with Matt, and attempting to make mine and my sister’s childhood as stable as it can be with an autistic sibling. He devoted his life to it.

2010 Journal Entry (17 years old):

The day came. It was Monday the 18th of January. I woke up to the sound of Dad telling Matt everything was going to be okay. “Alright Buddy, Me, Mom, You and Emy are gonna get in the car and drive to your school. Me and Mom and Emy are gonna drive back, and you are gonna stay there. You understand Buddy?” My dad told me that the night before we left Matt was really excited. He had been putting on his shoes and saying “GO!” This made me happy, until my dad looked down and said, “I don’t think he understands he’s not coming back.”

We needed to let go. It had gotten to the point where one of the only times my entire family was in the same room was when my dad needed all of our help to hold Matt down, so he could get a sleeping bag over his head. We had to hold the sleeping bag down and wait for Matt to calm down. We would sit, and wait, listening to him whisper the few words he knew how to say under his breath. Someone would say something to attempt to make the rest of us smile—usually my dad—and then we would come back to reality: Matt lying in a sleeping bag, helpless on the ground. This was the moment I think my entire family, especially my dad, knew what was being put off needed to be done.

2010 Journal Entry (17 years old):

We arrived at the school, but Matt was almost falling asleep because he got almost no sleep the night before. I was fine the entire day, until the end. Matt started to drift asleep in the chair. He wanted to stay awake, but couldn’t even fight his own tiredness after a while. As he fell asleep, my family was ready to head home. We had planned to just leave while he was sleeping. But as we started to walk out the door he woke up. My dad started sobbing and just softly said, “Bye Matty.” My mom couldn’t say anything. And I just patted the back of his head and told him goodbye. I started crying when I looked back and saw Matty trying to leave with us. I saw his face through the window of the door that the teachers shut, and my heart was broken. I had begun to feel the most emotional pain I have ever felt in my entire life. Saying goodbye to Matty was one of the hardest things I have ever had to do.

 

About six months later, Matt was asked to leave the school.

Matt has been “excused” from countless schools for autistic children.

My family and I are back to square one.

And I’m almost okay with that.

 

I have always been frustrated with the lack of resources for my brother and others like him, but my anger has escalated to a whole other level. I wrote this paper six years ago and we are still in square one. Today is “World Autism Awareness Day” which is the start of Autism Awareness Month and reading those words over and over again has honestly made my blood boil. Autism awareness? Awareness of what? Awareness of one segment of the entire spectrum? What about the other side of the spectrum? Why is it that these people can boast of how many resources they have created when we can’t find a single one? My brother’s biggest advocate died two weeks ago and try as my mother, my sister and I may, we can’t do what he did. I am coming to find that almost no one can do what he did.

For the longest time I thought Matt staying at home was a choice but I am slowly realizing that might not be the case. It wasn’t just that my dad wanted us to be a family, it was that he could not find any resources beyond himself. So he did what he always did—he took what he had and did the absolute best he could with it.
It just doesn’t seem that many people, or professionals, are very aware of Matt’s side of the spectrum and that isn’t acceptable. There has to be people out there who see him for more than the bruises he has given himself, my mother and I. Finding Matt the appropriate resources shouldn’t have to be a fight, but it is, and I am more than ready to do my part in that fight. For the sake of my brother and for the sake of my father’s life work, we won’t give up.

I do have to say that although I am upset that the resources for individuals with autism have not reached the side of the spectrum that my brother is at, immense progress has been made. When my brother was diagnosed, autism awareness was something that needed to be spread; not many people knew what it was. In my brother’s lifetime of 22 years an incredible amount of research has been done, funds have been collected and support has been gained in the name of autism. What I hope for the future is that the progress does not stop. I hope that the funds that are collected are utilized for research that explore educational settings and techniques to help individuals with autism; not for research that is attempting to “fix” or “cure” a part of who someone is. I hope that the resources gained from these funds stretch across the entire spectrum and I hope that these resources will give people like my brother just as much of a chance to maintain their dignity and lead meaningful lives as any other person

That is my hope.

The past week and two days

I have had more thoughts in the past week and two days than I can even begin to comprehend. My best friend; the man that I admire most in this life died. But I have not been able to begin grieving my father’s death because, how does one mourn the death of one family member while simultaneously attempting to save the life of another? Over this past week my sister, my mother and myself have attempted to take on the job that my father had single-handedly done without complaint for the past 20 years and to put it simply, we cannot do it.

One thing I learned from my father is the importance of not seeking out pity or attention for our own hardships in life, so writing a blog on my experiences surrounding his death and the mission to find my brother the help he deserves is confusing for me. I feel torn. I feel that if I am going to put my entire life on the internet, I have to have a reason beyond the millennial desire to be constantly affirmed by others. This blog can’t be another facebook post, instagram picture or snapchat video– attempting to give glimpses into my life for no real reason beyond the inclination to document everything about my existence.

I decided that I have three reasons for putting my ramblings into the internet. The first, is simply making our story available for those who care to know. My family has been astounded by the amount of support we have received in our time of need. Our family and friends have not only raised approximately 54,000 dollars in total for the “Stephen Knezz Memorial Fund for the Care of Matthew Knezz” but have also donated an unbelievable amount of time and love. I want to offer our story without reservations to these people.

The second is to gain some guidance in the process of accepting my father’s death. I have had so many individuals reach out to me saying, “I also lost my father too soon. If you need anything, let me know”. I want to share my thoughts with these individuals and ask my questions and hopefully gain perspective on how I will go about accepting something that still feels like a dream.

The third is to reach out to other families with members like Matty. I feel that there is an injustice being done to people like my brother. Autism awareness is at an all time high– but awareness of what kind of autism? My brother has been put in and has been taken out of countless “schools for autistic individuals”. My family has been told that the best place for my brother is a glorified jail cell. I refuse to believe that there are no other families that are encountering these same issues. My brother is not his violent meltdowns and my brother is not his diagnosis; he is so much more than these things. I hope our story reaches others like us and I hope that this experience can act as a catalyst inside of us to spearhead a change that must happen.

Excuse me while I get off of my soapbox to end on a simpler note. My father was a complex man who led a simple life– so I have to remember that if his death doesn’t in fact lead to a revolution in the autistic community, his life’s devotion to my brother is not in vain. One of the last posts on Facebook that my dad made was for my brother’s birthday. He wrote, “Happy birthday Matt. Thanks for teaching me life is its own reward”. No matter what these experiences amount to, I will carry what my father learned from my brother with me forever: Life is its own reward.