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.

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2 thoughts on “Why I am not Lighting it Up Blue

  1. My son is 6 – this year I decided if anyone asked me about Autism & Light it Up Blue…..I was going to give them the middle finger. I thought that was funny…..no one knows that our 6 yr old, Brennan, who has “Aspergers” &
    “Oppositional Defiance Disorder” broke his little 3 yr old brother’s TWO front teeth in half and busted his chin wide open, across – wide open. Yep, 9 stitches @ Christ Hospital……the teeth…..I can’t even handle. No one gets their teeth broken. That was just a forceful push!! My biggeest fear has always been and will be, Brennan breaking Nolan’s arm. Services are non-existent & we can’t afford them privately. So, he is also on a “cocktail of pharmaceuticals.” Brennan never slept, always tantruming, and violent…..we had no choice by the age of 3 to get him medicated. Now, 3 years later, it’s like a constant evolution. I am always chasing “peace.” I am sorry that you had to grow up in that web, but I am also proud that you so clearly can define the instances that took place. God has a plan for all of us. Sometimes it is hard to see…….Brennan is 1 of 5 children and he affects all of them – I hope my other children are as articulate and not spiteful……keeping Brennan “ok” is hard, but keeping the family “ok” is near impossible.

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    1. Thank you so much for taking the time to comment on my post, Anmarie. It truly does help to know that we are not alone in these experiences; even though I wish them upon no one. I can completely relate, and I can imagine that my father would have related even more so, to the feeling of “chasing peace”. Having a member of your family on the spectrum is a struggle. All we want are resources for our loved ones and there never seems to be a right fit. If you ever need another family to reach out to, feel free to message me and the same goes to your sons; I know the struggles of loving a sibling with autism– it can be so rewarding and so difficult at the same time.
      Sending good vibes your way,
      Emily

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