March 2, 2018, is a day I will never forget. It is the day that my Dylan moved out. He was 17 years old. He wasn’t going away to college, and he didn’t have a choice in moving out. To this day, I’m not sure what Dylan understood or thought that day. I’m certain he did not realize he would never again stay at the home he loved, where he had lived with his sister Anderson, his dad and me his entire life. Before you can understand why we made the choice to transition Dylan at 17 years old to a group home, you must first take a small glimpse into our life to that point.

My husband Kevin and I met in college at age 21. From the start, we did things the traditional way you think you should. We got engaged, planned a wedding for after college graduation and bought a starter home. We married at 26 and at 29, I was expecting our first baby - a boy! I can picture the night he was born like it was yesterday. My mom and dad, my in-laws and Kevin were all crammed in my hospital room waiting for this baby. This baby that would be the first grandson for my parents and first grandchild for Kevin's parents. And that day, everything went just as we had planned. It was a normal delivery with an adorable baby to bring home to a meticulously arranged nursery we had so carefully designed. Everything was planned out, including the announcements, the baby "stuff", the childcare for when I went back to work, and even the feeding schedule. We were schedule people and Dylan was perfect for us. He slept through the night at 8 weeks. He crawled and walked early and smiled and laughed all the time. He was beautiful and a pure joy. But we noticed that he was not talking. So, I read every book on boys that talked late and first children that didn't have a need to talk. I remember the pediatrician recommending we take him to a psychologist when he was 2, because she said he should be talking. We followed her recommendation. 

To this day, I vividly remember that cold, horrible Psychologist to whom we took our precious baby. The person who watched Dylan play for 10 minutes then put his pencil down and told us bluntly, coldly that he was more than likely autistic. I remember being positive that couldn't be right. I didn't even know what autism was except for thinking of the movie “Rainman”. I was in shock. This was my little boy. I had all these plans and hopes for Dylan. He was going to play sports and have friends over and get his driver’s license. He would take girls to dances, get his first job then go to college. Those thoughts ended abruptly. I was immediately thrown into doctor’s appointments with various specialists who administered endless tests and questionnaires and therapies. From there, daycare after daycare kicked Dylan out, even after I was up front about him and after discussing whether they said they could handle it. I remember the phone calls at work, especially the one telling me our own school district was kicking him out of 1st grade! You see, he was a runner. No one could keep him in a room, let alone a building. He ran into neighbors’ houses, and he ran out of stores right into the parking lot. We had locks installed from the inside at home and permanently locked the windows. He got naked all the time even in the car, belted in the back seat while on the turnpike. 

But still, we continued to try to have this "normal" childhood. I had birthday parties at skating rinks and jump places. I invited "friends" and every party was a disaster. I took him places and left in tears because it never went like I planned. We went on family vacations like you are supposed to and, unfortunately, those never went as planned either. We went to the beach, to Disney, to ballgames, Sesame place and indoor water parks. They were horrible disasters with scenes and tantrums and leaving restaurants before the food came. And, at some point, we gave up on vacations. We sat at home because we couldn’t do things like join the local pool or really anything that most families take for granted. I am not proud to admit I was jealous of “normal families”. I sat in my house watching neighbors hang out in their driveways and enjoy drinks while their kids played somewhere nearby. They went trick or treating in groups and had so much fun. In those environments, Dylan was uncontrollable, and Kevin and I would inevitably get in a big fight. Eventually I had to contend with the reality (in my eyes) of constantly disappointing my second child, a sweet little girl we named Anderson. This perfect little sister had no choice but to go along on this crazy ride. She was constantly pushed aside for the unsafe things her brother was doing. I often think the toll it took on her was more than anyone understands, and that any sibling should have to endure.

Back to Dylan moving out. At a point, it became necessary for our Dylan to leave the home that he had shared with the family he adored more than anything in life. He moved into a group home about 25 minutes away. Looking back, it is something I was positive I would not survive. We are all dedicated mothers, but Dylan was my 24/7. As a 17-year-old, I was still showering him, helping him dress, often sleeping with him, making his food and countless other things. People don’t like to talk about the hard truth with many things involving autism but here they are! Dylan was not toilet trained. When he couldn’t handle something happening, he would get aggressive and hit me, Kevin and, at times, Anderson. The stress in our home was often indescribable. It is hard to illustrate the way we lived as it was so different from what people know. Autism is a lonely world. It is difficult to survive, and it is hard to make a marriage survive. There were numerous times both Kevin and I were not sure we could continue. The stress was constant.

Just imagine. Imagine being locked in your house, literally, from the inside. Imagine having your windows permanently nailed shut so your grown son wouldn’t jump out. Imagine a world of toileting accidents from a teenage boy, gas burners on the stove being turned on as a pastime and microwaves being set on fire. Picture all those things, then realize those things could never minimize or suppress the love we had for Dylan. Those things never diminished – for a second – what an amazing young man our son was and is, in our eyes. Even with that love for Dylan, we knew we could not continue the same way. For all our sakes, we had to consider some tough decisions. 

With that thought, we started discussions with Dylan’s neurologist, his teachers and the owner of the agency we used for caregivers to evaluate and chart the best path forward for Dylan. It was a heartbreaking decision that kept me awake at night. What’s more, I had caregivers that were literally mad at me for allowing my own son to move out into a group home. They told me off, talked about me to others and insulted Kevin and I as parents. One even had the nerve to tell me we were “unfit” to be parents. The decision to transition Dylan was a long, detailed process – and certainly not easy. In an effort not to confuse Dylan, he did not visit our house for a year after moving out. Yet another consequence that nearly broke me. We worked a lot with Dylan on the distinction between Mom and Dad’s house and what was now “Dylan’s House”. We eventually sold our home where we raised our children. We moved for many reasons, but primarily to help make it easier for Dylan to understand. The pain I have felt and that still haunts me is something I can’t explain. The silence around me without Dylan is deafening. There are moments I miss that I have to hear about from caregivers who see my son more than I do and that is tough. But the independence Dylan now has makes it all worth it. The joy of my son having his own home now, 10 minutes away, is worth it. Kevin and I have worked so hard to create a life of independence for Dylan – the type of independence we all want for our children no matter their needs. His independence is totally worth the last 4 years of struggling to sleep through the night. The times I wake up with part of me missing, where I am left wondering how my guy slept and texting a caregiver for a picture so I can see that smile – IT IS WORTH IT!And now, we take our passion for autism – and our undying passion for Dylan – and we make it our life’s mission to continue this journey for him and others like him! We created Dylan’s House to educate, advocate and support families that are living what we lived. If we can help one family, one young man or woman navigating this autism world then we will be successful. And, if we can help those same strong people get through what we got through just a little easier than Dylan’s House and, more importantly, Dylan will have fulfilled this mission!

- Dylan’s Mom - March 2, 2018, is a day I will never forget. It is the day that my Dylan moved out. He was 17 years old. He wasn’t going away to college, and he didn’t have a choice in moving out. To this day, I’m not sure what Dylan understood or thought that day. I’m certain he did not realize he would never again stay at the home he loved, where he had lived with his sister Anderson, his dad and me his entire life. Before you can understand why we made the choice to transition Dylan at 17 years old to a group home, you must first take a small glimpse into our life to that point.

My husband Kevin and I met in college at age 21. From the start, we did things the traditional way you think you should. We got engaged, planned a wedding for after college graduation and bought a starter home. We married at 26 and at 29, I was expecting our first baby - a boy! I can picture the night he was born like it was yesterday. My mom and dad, my in-laws and Kevin were all crammed in my hospital room waiting for this baby. This baby that would be the first grandson for my parents and first grandchild for Kevin's parents. And that day, everything went just as we had planned. It was a normal delivery with an adorable baby to bring home to a meticulously arranged nursery we had so carefully designed. Everything was planned out, including the announcements, the baby "stuff", the childcare for when I went back to work, and even the feeding schedule. We were schedule people and Dylan was perfect for us. He slept through the night at 8 weeks. He crawled and walked early and smiled and laughed all the time. He was beautiful and a pure joy. But we noticed that he was not talking. So, I read every book on boys that talked late and first children that didn't have a need to talk. I remember the pediatrician recommending we take him to a psychologist when he was 2, because she said he should be talking. We followed her recommendation. 

To this day, I vividly remember that cold, horrible Psychologist to whom we took our precious baby. The person who watched Dylan play for 10 minutes then put his pencil down and told us bluntly, coldly that he was more than likely autistic. I remember being positive that couldn't be right. I didn't even know what autism was except for thinking of the movie “Rainman”. I was in shock. This was my little boy. I had all these plans and hopes for Dylan. He was going to play sports and have friends over and get his driver’s license. He would take girls to dances, get his first job then go to college. Those thoughts ended abruptly. I was immediately thrown into doctor’s appointments with various specialists who administered endless tests and questionnaires and therapies. From there, daycare after daycare kicked Dylan out, even after I was up front about him and after discussing whether they said they could handle it. I remember the phone calls at work, especially the one telling me our own school district was kicking him out of 1st grade! You see, he was a runner. No one could keep him in a room, let alone a building. He ran into neighbors’ houses, and he ran out of stores right into the parking lot. We had locks installed from the inside at home and permanently locked the windows. He got naked all the time even in the car, belted in the back seat while on the turnpike. 

But still, we continued to try to have this "normal" childhood. I had birthday parties at skating rinks and jump places. I invited "friends" and every party was a disaster. I took him places and left in tears because it never went like I planned. We went on family vacations like you are supposed to and, unfortunately, those never went as planned either. We went to the beach, to Disney, to ballgames, Sesame place and indoor water parks. They were horrible disasters with scenes and tantrums and leaving restaurants before the food came. And, at some point, we gave up on vacations. We sat at home because we couldn’t do things like join the local pool or really anything that most families take for granted. I am not proud to admit I was jealous of “normal families”. I sat in my house watching neighbors hang out in their driveways and enjoy drinks while their kids played somewhere nearby. They went trick or treating in groups and had so much fun. In those environments, Dylan was uncontrollable, and Kevin and I would inevitably get in a big fight. Eventually I had to contend with the reality (in my eyes) of constantly disappointing my second child, a sweet little girl we named Anderson. This perfect little sister had no choice but to go along on this crazy ride. She was constantly pushed aside for the unsafe things her brother was doing. I often think the toll it took on her was more than anyone understands, and that any sibling should have to endure.

Back to Dylan moving out. At a point, it became necessary for our Dylan to leave the home that he had shared with the family he adored more than anything in life. He moved into a group home about 25 minutes away. Looking back, it is something I was positive I would not survive. We are all dedicated mothers, but Dylan was my 24/7. As a 17-year-old, I was still showering him, helping him dress, often sleeping with him, making his food and countless other things. People don’t like to talk about the hard truth with many things involving autism but here they are! Dylan was not toilet trained. When he couldn’t handle something happening, he would get aggressive and hit me, Kevin and, at times, Anderson. The stress in our home was often indescribable. It is hard to illustrate the way we lived as it was so different from what people know. Autism is a lonely world. It is difficult to survive, and it is hard to make a marriage survive. There were numerous times both Kevin and I were not sure we could continue. The stress was constant.

Just imagine. Imagine being locked in your house, literally, from the inside. Imagine having your windows permanently nailed shut so your grown son wouldn’t jump out. Imagine a world of toileting accidents from a teenage boy, gas burners on the stove being turned on as a pastime and microwaves being set on fire. Picture all those things, then realize those things could never minimize or suppress the love we had for Dylan. Those things never diminished – for a second – what an amazing young man our son was and is, in our eyes. Even with that love for Dylan, we knew we could not continue the same way. For all our sakes, we had to consider some tough decisions. 

With that thought, we started discussions with Dylan’s neurologist, his teachers and the owner of the agency we used for caregivers to evaluate and chart the best path forward for Dylan. It was a heartbreaking decision that kept me awake at night. What’s more, I had caregivers that were literally mad at me for allowing my own son to move out into a group home. They told me off, talked about me to others and insulted Kevin and I as parents. One even had the nerve to tell me we were “unfit” to be parents. The decision to transition Dylan was a long, detailed process – and certainly not easy. In an effort not to confuse Dylan, he did not visit our house for a year after moving out. Yet another consequence that nearly broke me. We worked a lot with Dylan on the distinction between Mom and Dad’s house and what was now “Dylan’s House”. We eventually sold our home where we raised our children. We moved for many reasons, but primarily to help make it easier for Dylan to understand. The pain I have felt and that still haunts me is something I can’t explain. The silence around me without Dylan is deafening. There are moments I miss that I have to hear about from caregivers who see my son more than I do and that is tough. But the independence Dylan now has makes it all worth it. The joy of my son having his own home now, 10 minutes away, is worth it. Kevin and I have worked so hard to create a life of independence for Dylan – the type of independence we all want for our children no matter their needs. His independence is totally worth the last 4 years of struggling to sleep through the night. The times I wake up with part of me missing, where I am left wondering how my guy slept and texting a caregiver for a picture so I can see that smile – IT IS WORTH IT!And now, we take our passion for autism – and our undying passion for Dylan – and we make it our life’s mission to continue this journey for him and others like him! We created Dylan’s House to educate, advocate and support families that are living what we lived. If we can help one family, one young man or woman navigating this autism world then we will be successful. And, if we can help those same strong people get through what we got through just a little easier than Dylan’s House and, more importantly, Dylan will have fulfilled this mission!

- Dylan’s Mom -