Dylan’s house
Our story
March 2, 2018 is a day I will never forget. 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 he understood or thought that day. I don’t think he thought he would never again stay at the home he loved and where he lived with me, his dad and his sister Anderson for his entire life. I think before you can understand why w
e made the choice to transition Dylan at 17 to a group home you must first have a small glimpse into our life. My husband Kevin and I met when we were 21 in college. From the start we did things in the way you think you should. We got engaged, planned a wedding for after our college graduations 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 and my in laws and Kevin- all shoved in my room waiting for this baby. The first grandson for my parents and first grandchild for Kevin's parents- And things went like planned- a normal delivery, an adorable baby to bring home to the nursery we so carefully planned out- everything was planned out- the announcements, the baby "stuff", the childcare for when I went back to work, the feeding schedule- we were schedule people and Dylan was perfect. He slept through the night at 8 weeks, he crawled and walked early, he smiled and laughed all the time. He was beautiful and pure joy. But he didn't talk- I read every book on boys that talked late and first children that didn't have a need to talk- I remember the pediatrician saying maybe we should take him to a psychologist when he was 2, He should be talking she said. I remember that cold, horrible Psychologist we took him to- that watched Dylan play for 10 minutes then put his pencil down and told us 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 Rainman. I was shocked - this was my little boy - I had all these plans and hopes for Dylan/ he would play sports, and have friends over and get his driver's license. He would take girls to dances, get his first job, go to college. But I was thrown into Dr appts and specialists, tests and questionnaires and therapies- daycare after daycare that kicked Dylan out, even after I was upfront about him and they said they could handle it/ the phone calls at work- even our own school district kicking him out in 1st grade- 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- in the car- even seat belted in the back seat on the turnpike- I tried to have this "normal" childhood- I had birthday parties at skating places and jump places and I invited "friends'' and every party was a disaster. I took him places and left in tears because they never went like I planned- we went on family vacations like you are supposed to do/ to the beach, and Disney- ballgames and Sesame place and indoor water parks- they never went like I planned- they were horrible disasters with scenes and tantrums and leaving restaurants before the food came, and then we gave up on the vacations. We sat at home because we couldn't belong to a pool or really do anything that people take for granted. I am not proud to admit I was jealous of “normal families' ' I sat in my house watching neighbors sit in their driveways and enjoy drinks while their kids played. They went trick or treating in groups and had so much fun. Dylan was uncontrollable and Kevin and I would inevitably get in a big fight. I constantly disappointed my second child, a sweet little girl we named Anderson. A perfect baby that had no choice but to go along on this crazy ride. She was constantly pushed aside for the unsafe things her brother was doing and I often think the toll it took on her was more than anyone understands. Back to Dylan moving out- my Dylan moved out of his home that he shared with those that he adored more than anything in life- he moved into a group home about 25 minutes away and 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 many many things. People don’t like to talk about the hard truth with many things involving autism but Dylan was not toilet trained and when he couldn’t handle something happening he would be aggressive and hit me, Kevin and at times Anderson. The stress in our home at times was indescribable. It is hard to reveal the way we lived- it was not what people understood. Autism is a lonely world- it is hard to survive and it is hard to make a marriage survive. There were numerous times both my husband and I were not sure we could continue on- the stress was constant. 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. It never surpassed the love I had for Dylan and what an amazing young man he was and is. But we knew that we could not continue. For Dylan, Anderson and Kevin and I. We started discussions with his Neurologist, teachers and the owner of the agency we used for caregivers as to the best route for Dylan. It was a heartbreaking decision that left me awake at night. 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 telling me we were unfit parents. The decision to transition Dylan was a long and detailed process and to not confuse Dylan he did not come home to our house for a year after moving out. This nearly broke me- and it was a lot of working with Dylan on the distinction between mom and dad's house and Dylan's House. We eventually sold our home where I raised my children and moved for many reasons but the main one being it was 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 that is deafening- the moments I miss that I have to hear about from caregivers that see my son more than I do. But the independence of Dylan has made it all worth it. The joy of my son having his own home now which is 10 minutes away is all worth it. The life that my husband and I have worked so hard to create for Dylan- the independence we all want for our children no matter their needs. This is worth the last 4 years where I still cannot sleep through the night, where 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 my husband and my passion and life’s mission to continue this journey for Dylan and for many others. 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 I will be successful. If I can help parents get through what I got through then I will be
