There are so many causes out there that have an “Awareness
Month”. We change our profile pictures, wear certain colors, or buy special
products (I often wonder how much of the money raised or colors worn actually
benefit the causes that are so dear to our hearts). It seems as though people
in general are aware of autism, but there still is a misunderstanding of what
autism looks like. Why? Because autism looks different for each child. It
doesn't just fit into one mold. When I was trying to make my case for why I
thought Timothy had autism, I generally got the same reaction - "He can
talk and he shows emotions. Therefore, he couldn't possibly be autistic." To be
autistic, you must either be non-verbal or Rainman. Wrong. . . At least
in our family.
April is Autism awareness month. I don’t want to just make people aware of autism, I want to
make people aware of what autism looks like in our family. My hope is that by
sharing our story, it will inspire other families to
do the same. I would love for people to share these posts and
encourage their friends and family with autistic children to do the same. You can use #myautisticreality so we can all follow each others stories.
Day 1- I think on this first day, I should introduce you to our family. My husband, Brian, and I live in Tennessee and we have five children. Tori is eighteen, Zachary is thirteen, Timothy is eleven, Benjamin is seven, and Payton is four. Mostly though, I want to introduce you to Timothy. The last week of December in 2001, I came down with a stomach virus, or so I thought. After a week of being sick and completely exhausted, I began to wonder why this virus was lasting so long. I also began to wonder how the rest of my family was able to avoid this terrible illness. I’m sure most women would’ve had the, “Duh,” moment a lot earlier, but being pregnant wasn’t anywhere on my radar. We were done. We had the “perfect” family, a girl and a boy. What more could we need? Apparently another boy (and further down the road - one more boy and another girl). To say we were a little shocked by the two pink lines on the test would be an understatement. This should’ve been my first clue as to what our life was going to be like with our newest blessing. My pregnancy was rough! I lost 22 pounds in my first trimester due to illness. By the end of my pregnancy, I was in a lot of pain. Timothy has a flare for the dramatic, so it’s only fitting that he came into this world five weeks early. Oh, and did I mention we were on vacation when I went into labor? He seemed like a healthy baby boy for the first few days of his life. He was born on a Wednesday, but by the following Monday, I couldn’t wake him up anymore. He was admitted to the hospital that day. This began a long journey of finding out all the things wrong with him. As all of the medical issues were being resolved, I knew there was more. I know for some families the diagnosis of autism can be devastating. For me it was a relief. I had been saying for a while that Timothy was autistic, but no one would listen to me. As soon as I would say it, I was met with a reason why it wasn’t possible. I knew that I was right though. Being around other children with autism, I could see the similarities between their behavior and Timothy’s. When I finally got someone to listen to me long enough, I was told there was no doubt. For this I felt relieved because the autism label was the key that unlocked the door to the help he needed. It gave us clarity for his behavior and resources for solutions.
Day 2- Timothy began early intervention therapy when he was around 1 - 1 1/2 years old. He had an occupational therapist and a physical therapist who would come to our house several times a week. I mentioned in the beginning that I sensed from an early age Timothy was autistic. He spent a great deal of time rocking and crying when something happened he didn’t expect. When he would get really upset, he would rock violently and roll his eyes back in his head. His occupational therapist told me that I needed to stop him from doing this. She said he was trying to tune us all out. He started doing it so often, she became concerned. Her concern was by him tuning us out so frequently, he would eventually tune us out altogether. So, whenever he would start to rock and roll his eyes back in his head, I would get down on the floor with him and talk to him until he would start looking at me again. If he tried closing his eyes, I would open them and keep talking. Eventually, he stopped doing it as often. He still rocks on a regular basis, but he doesn’t roll his eyes back in his head anymore, trying to tune us out.
Day 3- I’m still trying to learn the balance between making Timothy do things even when he doesn’t want to, and not expecting more of him than he can handle. I also worry way too much about how people will react to him. Some days it just doesn’t seem worth the effort to force Timothy to interact with the world as well as forcing the world to interact with him. I remember one shopping trip when my sister and her family were visiting. Timothy absolutely did not want to go. I made him go anyway. His behavior progressively got worse. Eventually, he went into full meltdown mode. Right in the middle of the store, he began screaming and throwing himself around. Out of desperation, I sat down in the floor with him. I wrapped my arms around him and squeezed tightly, while rocking back and forth as hard as I could. It took a little while, but he did finally calm down. We received lots of stares while sitting in the floor together rocking. One thing I’ve learned over the years is I need to let “the world” go and just focus on taking care of my son.
Day 4 (This story is from Timothy's older sister, Tori.)- Timothy went through a phase where he loved the High School Musical movies. He would watch them all the time and he knew every musical number. In High School Musical 2 there was one scene where the lead female character (Gabriella) said good-bye to the lead male character (Troy). It was slow, dramatic, and, for Timothy, tear-worthy. To him, this was an incredibly sad moment. He could deeply feel Troy's heartache as he watched his love walk away. Timothy knew at the end of the movie they got back together, but every time he saw this scene, his reaction was the same. Through big, crocodile tears he would say, “Gabriella said goodbye!” My best friend happens to share a name with the main character. One day, when I was leaving to go to her house, Timothy heard where I was going and started panicking. He told me, "Tell Gabriella not to say good-bye to Troy!"
Day 5- Timothy goes through phases where he becomes obsessed with certain things or people. I never know when one obsession will end and another one will begin. Some of these obsessions are funny. Others can be expensive for us (like his current obsession with putting items in his ears). Then there are the phases that are downright embarrassing. One of the most embarrassing phases he went through, I refer to as his “grabby phase”. He went through a time of grabbing women on their backsides. He didn’t do it every time he passed someone. He did it randomly enough to keep me on my toes. I felt like I should carry a sign or a recording around with me saying, “I’m sorry.” Sometimes, I would try to explain, other times I simply apologized and walked away. As if that phase wasn’t bad enough, he took it to a whole new level. He began grabbing women on their chest. One of the most embarrassing times was when I took my children to a curriculum display. At a curriculum display, you can look at all the books to see what they’re like before purchasing. When we walked into the room I saw lots of moms peacefully browsing curriculum while their well-behaved children sat quietly at a table reading their novels. Ok, maybe they weren’t really reading novels, but that’s what it seemed like to me. Then we came in, the Britt family tornado. I was trying desperately to keep Timothy from dumping books off of the table while also trying to look through the ones I thought about purchasing. I was watching my friend’s daughter as well, who was around 13 years old at the time. She saw the trouble I was having trying to hold Timothy in my lap while also filling out paperwork. So, she knelt down in front of him to try and distract him. Well, this just put her at the perfect height for him to grab her. After he grabbed her, she started laugh due to embarrassment. Timothy took this as an indication that he should keep going. He laughed loudly as he continued to grab her. She had to stand up and back away, while he continued to laugh and reach for her. Of course this caught the attention of everyone in the room. I’m not even sure that I needed everything I purchased that day. I just quickly filled out the paperwork, paid the money, and fled. I was so glad when he finally moved past that humiliating phase.
Day 6- Since Timothy was little, he’s had an eye for the ladies. Before he could talk, he would just stare at them. When I say stare, I mean an unrelenting stare. Then once he finally learned to speak, it became a little more awkward. I never really watched the show “Friends”, but I’ve seen enough to know Joey’s infamous pick up line. Somehow, so did Timothy. He was sitting in the front of my grocery cart when a pretty lady walked by him. As she walked by he said, “Hey. How you doin’?” Man, was I embarrassed! Another time as we were walking into church, a teenage girl walked by us. As she was passing Timothy said, “Hey, hey, hey…slow down. Not so fast.” He wanted this young girl to walk beside him into church. When we were in Philadelphia for Timothy’s open heart surgery, we had to stay at a Ronald McDonald House. Different groups would come in to fix dinner or do projects around the house. A group of teenagers from a local high school came one night to cook dinner and hang out with all of the kids staying there. It wasn’t long before Timothy was surrounded by every girl there. He turned on his charm and had them eating out of his hand. They did whatever he asked them to do. I think if he had asked them to jump, they would have replied, “How high?”
Day 7-In December of 2006, we welcomed Britt baby #4. I wasn’t sure how Timothy would handle having a baby around. In the beginning, he viewed Benjamin as more of a toy than a person. Timothy liked to play one particular game with his new toy, I mean little brother. He would walk up to Benjamin, look at him, and then yell, “Boo!”, causing his baby brother to jump. Timothy thought this was the most fun game. He would laugh and laugh. Benjamin did not see the humor, however; he would cry and scream. I tried to explain to Timothy that babies didn’t like being scared. He didn’t believe me, so the “game” continued. Eventually, when Timothy would approach Benjamin, he would start crying. One day, Timothy came to me and said, “Benjamin doesn’t like me.” I explained to him again how babies didn’t like to be scared and how maybe Benjamin would like him more if he was nice to him instead. It still took a while for Timothy to really understand. My sister reminded me of another time when we were all together and I found Timothy in the room where Benjamin was sleeping. When I picked up Benjamin, I noticed there were scratches all over his face. I asked Timothy what happened. He replied, “His face was itchy, so I scratched it.” Poor Benjamin laid the groundwork for teaching Timothy what babies like and dislike. By the time Britt baby #5 came along, Timothy had learned. As soon as we walked in the door with his new baby sister, Timothy began singing her a lullaby. He kept his voice soft and sweet. Now he actually does well with babies. When he sees one, there’s nothing I can do to stop him from going to them. Thankfully, he switched up his game to peek-a-boo instead of just yelling, “Boo!”
Day 8- We lived in Virginia when Timothy began kindergarten. I remember having an IEP meeting where I was told he wasn’t functioning in the school's Special Ed Program. They told me we might need to start looking at alternatives. In my mind I was thinking, “I thought Special Ed was the alternative.” Shortly thereafter, Brian unexpectedly got a job offer that moved us to Tennessee. I wasn’t sure what to expect, but I heard Rutherford County in Tennessee had great schools. We moved the weekend after Thanksgiving in 2007. Timothy had only spent a few weeks at his new school before the Christmas break. While he was on break, I noticed him playing with a learning toy we had. It had all the letters of the alphabet on it. At first I thought he was pretending to know all the letters and their sounds, but then I started listening closer. He knew every letter and the sound it made. Brian and I were blown away by how much he had learned in just those few short weeks. I’m not sure what the teachers here in Tennessee did that was different, but whatever it was worked for Timothy. We knew then God had directed our steps and provided exactly what Timothy needed.
Day 9- Not too long after we moved to Tennessee, Timothy went through a rough patch at night. He would wake up sometimes at 2 a.m. ready to start his day. Once he woke up, I couldn’t get him back to sleep. It was an extremely exhausting phase. After one particularly rough night, Zachary came stumbling down the stairs rubbing his eyes. Knowing how little sleep I had gotten, I asked him how many times Timothy had awoken him. He told me one time during the night he woke up feeling a banging on his stomach. When he opened his eyes, he saw Timothy hovering over him with a toy hammer in his hand, banging away. Like most of us would, Zachary asked him what in the world he was doing. Timothy replied, “It’s working! My wobot is working!” Zachary did not share his enthusiasm, however. I couldn’t help but laugh as I thought about Timothy being lost in his fantasy world, working so hard on his robot. I’m sure he was overjoyed to have his “creation” come to life.
Day 10- Timothy was very sick when he was younger. His first few years were full of doctor appointments, tests, procedures, hospital stays, and surgeries. By age four, he had undergone four major surgeries. It wasn't until after his last surgery, open heart surgery, that the multiple hospital stays each year lessened. It was heartbreaking to see my little one go through such awful things. Being autistic, made it harder because he couldn’t always process or understand what was happening. A lot of times I had to help hold him down while the medical staff poked and prodded him. He would look at me as though wondering why I was allowing them to do these things to him. I felt so helpless, knowing I couldn't make it stop. Out of desperation to do anything to comfort him, I would rub his hair and whisper comforting words to him. It never seemed to help because he would just keep screaming and rocking. Even though it seemed to be in vain, I kept trying to comfort him throughout the years. When Timothy was six, I was pregnant with Payton. For some reason I can't remember now, Timothy went with me to one of my pre-natal appointments. We were just there to listen to Payton’s heartbeat. He was playing with his toys when the midwife came in. As she laid me back on the table and started to locate the heartbeat, Timothy stopped what he was doing and came to my side. He started rubbing my hair and whispering in my ear all those things that I used to say to him. He kept whispering them over and over again. I knew at that moment all those years of what seemed to be comforting in vain, were not. He did hear me, and he did understand when I was trying to comfort him. I thought all those times of trying to comfort him never really mattered, but they did. I lost it. I'm sure the midwife thought I was crazy, lying there bawling. I was so overwhelmed, that I could barely explain what was happening. When he thought I was going through some of the things he had gone through, he wanted to comfort me. As most mothers of autistic children can tell you, getting glimpses into what they’re really thinking and feeling are not as common as with typically developing children. What a gift the Lord gave me that day! I have treasured it in my heart ever since. I learned that even when it seems as though you're not getting through, you are.
Day 11- Timothy went through a really rough stage when Payton was a baby. He had so much trouble controlling his anger. He took it out on me for the most part. It didn’t matter who upset him, I was the one he hit. I tried not to take him out in public much during this time. We mostly stuck to the places where he was comfortable. There was one day, however, I couldn’t avoid going out with him. By the time I neared the end of my shopping, he was done! While in the store he got very angry and began shouting at me. I couldn’t get him calmed down and it escalated into him hitting me. We had to leave our groceries and get out of the store. I was wearing Payton in a sling, so I kept my arm stiffened to keep him from accidentally hitting her. On our way out, Benjamin fell down and started crying. So, there I was, wearing a baby in a sling on my chest, carrying a crying toddler on my back, and holding my arm out while holding on to Timothy so all he would be able to punch was my arm. Of course we made quite a scene and received many stares. One woman decided to do more than look. She came over to help me. Though there wasn’t much she could do, it meant so much that she didn’t just stare or judge, she offered to help. I don’t know her name, but I’ve never forgotten that moment.
Day 12- When he was in the first grade, I was invited to a Mother's Day party at Timothy's school. The morning of the party, he reminded me about it and wanted to make sure I was coming. After letting him know I would be there, I put him on the bus. Not too long after that, we got a phone call that my father-in-law had passed away. This meant that I would need to quickly get my family ready for a 12 hour drive back to Virginia. It’s no small task getting our family of seven ready for a road trip. It's especially difficult because Timothy has lots of food allergies. Stopping to eat along the way isn't an option for us, which means I have to prepare all of our food. When I thought of all the work facing me, the idea of heading to school for an hour or so seemed to be out of the question. I knew I had to go, however, even if I didn't have time because Timothy was expecting me to be there. It may not bother him, but then what if it did? I’m never really sure of how a situation will affect him. He could handle it without any problem, or it could upset him and affect his behavior for the rest of the day. I did as much as I could and then headed off to the school. It really was a touching scene with a room full of children and their mothers. Some children were getting plates of food for their moms. Others were showing them all the gifts they had made with love. Timothy was doing therapy, so I took in this moment while waiting for him. When he came into the room, he looked at me, looked around the room, and said, “Can I go?” Heartwarming right? After I told him that he could, his teacher apologetically handed me my gifts. I reassured her that I was fine. I've learned that I can't make those moments happen with him. I just have to enjoy them when they do come. I've also learned that those heartwarming moments don’t always look the same as they do with my other children. It's not that he doesn't show affection, it just looks different and comes at unexpected times.
Day 13- Timothy doesn't have many inhibitions. When he gets into a character, he’s all in. He wants to dress, talk, and act like whatever character has his attention. That leads to some interesting moments. Some moments are pretty funny. Some can be a little embarrassing. His Tarzan phase was pretty interesting. Thankfully, it didn't last long. We never got used to him running around in his tighty whities while beating on his skinny little chest. Others lead to lots of laughs and fun. If he hears music and wants to dance down the street, he does. If he wants to act like a pirate, he does. When we were out shopping one time, Timothy decided he was a spy. Instead of trying to make him stop, I joined him in his fantasy world. While the rest of our family was shopping, we “tracked down” Daddy all throughout the store. We hid behind racks of clothing, tip-toed across aisles, and made ourselves "invisible" by standing up against the wall. Daddy figured out our game and played along with us. We got a lot of strange looks that day, but my favorite look was the smile on Timothy’s face.
Day 14 (Today's story is from Timothy's older brother, Zachary)- One Sunday, on our way home from church Timothy was pretending to be a bear hunter. He stayed in this character all the way home and through lunch. After lunch Timothy said he was going outside to hunt a bear. When he left, my mom asked me to go put on our bear costume so he could “hunt” me. My dad took him out the front door while I went out the back door to hide. I was not for the idea in the beginning because I was about 10 years old and of course every 10 year old wants to be cool. Dressing up as a bear so your little brother can “hunt” you was NOT cool. At first Tim didn’t know I had put on the costume. He was still hunting a pretend bear. I kept sneaking through the yard trying to be spotted by him. When he finally saw me, his face was priceless. He chased me through the yard and shot me with his toy gun. BAM! I was down. Tim stood over me proud of his hunting skills. Then my dad told him to butcher the meat before it goes bad. Somehow the bear revived and quickly ran inside.
Day 15- I was a little nervous when we first started letting Tori babysit. Not because I thought she was irresponsible, but because I know how difficult it can be to keep up with Timothy. He’s so impulsive. He’s also very quick. Usually, I don’t see him cause the damage, I just find the evidence. One time Tori called us saying that we needed to come home. Thankfully, we were almost there anyway. Timothy didn’t want to watch the same movie as the rest of the children, so he asked if he could go downstairs and watch something else. Tori told him that he could and off he went. After 10 minutes or so, Tori asked Zachary to go check on him while she made the popcorn. When Zachary went downstairs he noticed water coming from the bathroom. When he opened the door, he saw the sink overflowing. Timothy had turned on the water, plugged the sink, and walked out. Not only was the bathroom flooded, but it had gone through the wall into Zachary and Benjamin’s room. It took a while to get all that water off the bathroom floor and out of the carpet in the boy’s room. Tori is a wonderful babysitter, but I joke that it’s because of all the experiences that Timothy has given her. There aren’t many situations Tori could come across as a babysitter that she hasn’t already encountered in our home. I think we should call it “Britt Babysitting Boot Camp”.
Day 1- I think on this first day, I should introduce you to our family. My husband, Brian, and I live in Tennessee and we have five children. Tori is eighteen, Zachary is thirteen, Timothy is eleven, Benjamin is seven, and Payton is four. Mostly though, I want to introduce you to Timothy. The last week of December in 2001, I came down with a stomach virus, or so I thought. After a week of being sick and completely exhausted, I began to wonder why this virus was lasting so long. I also began to wonder how the rest of my family was able to avoid this terrible illness. I’m sure most women would’ve had the, “Duh,” moment a lot earlier, but being pregnant wasn’t anywhere on my radar. We were done. We had the “perfect” family, a girl and a boy. What more could we need? Apparently another boy (and further down the road - one more boy and another girl). To say we were a little shocked by the two pink lines on the test would be an understatement. This should’ve been my first clue as to what our life was going to be like with our newest blessing. My pregnancy was rough! I lost 22 pounds in my first trimester due to illness. By the end of my pregnancy, I was in a lot of pain. Timothy has a flare for the dramatic, so it’s only fitting that he came into this world five weeks early. Oh, and did I mention we were on vacation when I went into labor? He seemed like a healthy baby boy for the first few days of his life. He was born on a Wednesday, but by the following Monday, I couldn’t wake him up anymore. He was admitted to the hospital that day. This began a long journey of finding out all the things wrong with him. As all of the medical issues were being resolved, I knew there was more. I know for some families the diagnosis of autism can be devastating. For me it was a relief. I had been saying for a while that Timothy was autistic, but no one would listen to me. As soon as I would say it, I was met with a reason why it wasn’t possible. I knew that I was right though. Being around other children with autism, I could see the similarities between their behavior and Timothy’s. When I finally got someone to listen to me long enough, I was told there was no doubt. For this I felt relieved because the autism label was the key that unlocked the door to the help he needed. It gave us clarity for his behavior and resources for solutions.
Day 2- Timothy began early intervention therapy when he was around 1 - 1 1/2 years old. He had an occupational therapist and a physical therapist who would come to our house several times a week. I mentioned in the beginning that I sensed from an early age Timothy was autistic. He spent a great deal of time rocking and crying when something happened he didn’t expect. When he would get really upset, he would rock violently and roll his eyes back in his head. His occupational therapist told me that I needed to stop him from doing this. She said he was trying to tune us all out. He started doing it so often, she became concerned. Her concern was by him tuning us out so frequently, he would eventually tune us out altogether. So, whenever he would start to rock and roll his eyes back in his head, I would get down on the floor with him and talk to him until he would start looking at me again. If he tried closing his eyes, I would open them and keep talking. Eventually, he stopped doing it as often. He still rocks on a regular basis, but he doesn’t roll his eyes back in his head anymore, trying to tune us out.
Day 3- I’m still trying to learn the balance between making Timothy do things even when he doesn’t want to, and not expecting more of him than he can handle. I also worry way too much about how people will react to him. Some days it just doesn’t seem worth the effort to force Timothy to interact with the world as well as forcing the world to interact with him. I remember one shopping trip when my sister and her family were visiting. Timothy absolutely did not want to go. I made him go anyway. His behavior progressively got worse. Eventually, he went into full meltdown mode. Right in the middle of the store, he began screaming and throwing himself around. Out of desperation, I sat down in the floor with him. I wrapped my arms around him and squeezed tightly, while rocking back and forth as hard as I could. It took a little while, but he did finally calm down. We received lots of stares while sitting in the floor together rocking. One thing I’ve learned over the years is I need to let “the world” go and just focus on taking care of my son.
Day 4 (This story is from Timothy's older sister, Tori.)- Timothy went through a phase where he loved the High School Musical movies. He would watch them all the time and he knew every musical number. In High School Musical 2 there was one scene where the lead female character (Gabriella) said good-bye to the lead male character (Troy). It was slow, dramatic, and, for Timothy, tear-worthy. To him, this was an incredibly sad moment. He could deeply feel Troy's heartache as he watched his love walk away. Timothy knew at the end of the movie they got back together, but every time he saw this scene, his reaction was the same. Through big, crocodile tears he would say, “Gabriella said goodbye!” My best friend happens to share a name with the main character. One day, when I was leaving to go to her house, Timothy heard where I was going and started panicking. He told me, "Tell Gabriella not to say good-bye to Troy!"
Day 5- Timothy goes through phases where he becomes obsessed with certain things or people. I never know when one obsession will end and another one will begin. Some of these obsessions are funny. Others can be expensive for us (like his current obsession with putting items in his ears). Then there are the phases that are downright embarrassing. One of the most embarrassing phases he went through, I refer to as his “grabby phase”. He went through a time of grabbing women on their backsides. He didn’t do it every time he passed someone. He did it randomly enough to keep me on my toes. I felt like I should carry a sign or a recording around with me saying, “I’m sorry.” Sometimes, I would try to explain, other times I simply apologized and walked away. As if that phase wasn’t bad enough, he took it to a whole new level. He began grabbing women on their chest. One of the most embarrassing times was when I took my children to a curriculum display. At a curriculum display, you can look at all the books to see what they’re like before purchasing. When we walked into the room I saw lots of moms peacefully browsing curriculum while their well-behaved children sat quietly at a table reading their novels. Ok, maybe they weren’t really reading novels, but that’s what it seemed like to me. Then we came in, the Britt family tornado. I was trying desperately to keep Timothy from dumping books off of the table while also trying to look through the ones I thought about purchasing. I was watching my friend’s daughter as well, who was around 13 years old at the time. She saw the trouble I was having trying to hold Timothy in my lap while also filling out paperwork. So, she knelt down in front of him to try and distract him. Well, this just put her at the perfect height for him to grab her. After he grabbed her, she started laugh due to embarrassment. Timothy took this as an indication that he should keep going. He laughed loudly as he continued to grab her. She had to stand up and back away, while he continued to laugh and reach for her. Of course this caught the attention of everyone in the room. I’m not even sure that I needed everything I purchased that day. I just quickly filled out the paperwork, paid the money, and fled. I was so glad when he finally moved past that humiliating phase.
Day 6- Since Timothy was little, he’s had an eye for the ladies. Before he could talk, he would just stare at them. When I say stare, I mean an unrelenting stare. Then once he finally learned to speak, it became a little more awkward. I never really watched the show “Friends”, but I’ve seen enough to know Joey’s infamous pick up line. Somehow, so did Timothy. He was sitting in the front of my grocery cart when a pretty lady walked by him. As she walked by he said, “Hey. How you doin’?” Man, was I embarrassed! Another time as we were walking into church, a teenage girl walked by us. As she was passing Timothy said, “Hey, hey, hey…slow down. Not so fast.” He wanted this young girl to walk beside him into church. When we were in Philadelphia for Timothy’s open heart surgery, we had to stay at a Ronald McDonald House. Different groups would come in to fix dinner or do projects around the house. A group of teenagers from a local high school came one night to cook dinner and hang out with all of the kids staying there. It wasn’t long before Timothy was surrounded by every girl there. He turned on his charm and had them eating out of his hand. They did whatever he asked them to do. I think if he had asked them to jump, they would have replied, “How high?”
Day 7-In December of 2006, we welcomed Britt baby #4. I wasn’t sure how Timothy would handle having a baby around. In the beginning, he viewed Benjamin as more of a toy than a person. Timothy liked to play one particular game with his new toy, I mean little brother. He would walk up to Benjamin, look at him, and then yell, “Boo!”, causing his baby brother to jump. Timothy thought this was the most fun game. He would laugh and laugh. Benjamin did not see the humor, however; he would cry and scream. I tried to explain to Timothy that babies didn’t like being scared. He didn’t believe me, so the “game” continued. Eventually, when Timothy would approach Benjamin, he would start crying. One day, Timothy came to me and said, “Benjamin doesn’t like me.” I explained to him again how babies didn’t like to be scared and how maybe Benjamin would like him more if he was nice to him instead. It still took a while for Timothy to really understand. My sister reminded me of another time when we were all together and I found Timothy in the room where Benjamin was sleeping. When I picked up Benjamin, I noticed there were scratches all over his face. I asked Timothy what happened. He replied, “His face was itchy, so I scratched it.” Poor Benjamin laid the groundwork for teaching Timothy what babies like and dislike. By the time Britt baby #5 came along, Timothy had learned. As soon as we walked in the door with his new baby sister, Timothy began singing her a lullaby. He kept his voice soft and sweet. Now he actually does well with babies. When he sees one, there’s nothing I can do to stop him from going to them. Thankfully, he switched up his game to peek-a-boo instead of just yelling, “Boo!”
Day 8- We lived in Virginia when Timothy began kindergarten. I remember having an IEP meeting where I was told he wasn’t functioning in the school's Special Ed Program. They told me we might need to start looking at alternatives. In my mind I was thinking, “I thought Special Ed was the alternative.” Shortly thereafter, Brian unexpectedly got a job offer that moved us to Tennessee. I wasn’t sure what to expect, but I heard Rutherford County in Tennessee had great schools. We moved the weekend after Thanksgiving in 2007. Timothy had only spent a few weeks at his new school before the Christmas break. While he was on break, I noticed him playing with a learning toy we had. It had all the letters of the alphabet on it. At first I thought he was pretending to know all the letters and their sounds, but then I started listening closer. He knew every letter and the sound it made. Brian and I were blown away by how much he had learned in just those few short weeks. I’m not sure what the teachers here in Tennessee did that was different, but whatever it was worked for Timothy. We knew then God had directed our steps and provided exactly what Timothy needed.
Day 9- Not too long after we moved to Tennessee, Timothy went through a rough patch at night. He would wake up sometimes at 2 a.m. ready to start his day. Once he woke up, I couldn’t get him back to sleep. It was an extremely exhausting phase. After one particularly rough night, Zachary came stumbling down the stairs rubbing his eyes. Knowing how little sleep I had gotten, I asked him how many times Timothy had awoken him. He told me one time during the night he woke up feeling a banging on his stomach. When he opened his eyes, he saw Timothy hovering over him with a toy hammer in his hand, banging away. Like most of us would, Zachary asked him what in the world he was doing. Timothy replied, “It’s working! My wobot is working!” Zachary did not share his enthusiasm, however. I couldn’t help but laugh as I thought about Timothy being lost in his fantasy world, working so hard on his robot. I’m sure he was overjoyed to have his “creation” come to life.
Day 10- Timothy was very sick when he was younger. His first few years were full of doctor appointments, tests, procedures, hospital stays, and surgeries. By age four, he had undergone four major surgeries. It wasn't until after his last surgery, open heart surgery, that the multiple hospital stays each year lessened. It was heartbreaking to see my little one go through such awful things. Being autistic, made it harder because he couldn’t always process or understand what was happening. A lot of times I had to help hold him down while the medical staff poked and prodded him. He would look at me as though wondering why I was allowing them to do these things to him. I felt so helpless, knowing I couldn't make it stop. Out of desperation to do anything to comfort him, I would rub his hair and whisper comforting words to him. It never seemed to help because he would just keep screaming and rocking. Even though it seemed to be in vain, I kept trying to comfort him throughout the years. When Timothy was six, I was pregnant with Payton. For some reason I can't remember now, Timothy went with me to one of my pre-natal appointments. We were just there to listen to Payton’s heartbeat. He was playing with his toys when the midwife came in. As she laid me back on the table and started to locate the heartbeat, Timothy stopped what he was doing and came to my side. He started rubbing my hair and whispering in my ear all those things that I used to say to him. He kept whispering them over and over again. I knew at that moment all those years of what seemed to be comforting in vain, were not. He did hear me, and he did understand when I was trying to comfort him. I thought all those times of trying to comfort him never really mattered, but they did. I lost it. I'm sure the midwife thought I was crazy, lying there bawling. I was so overwhelmed, that I could barely explain what was happening. When he thought I was going through some of the things he had gone through, he wanted to comfort me. As most mothers of autistic children can tell you, getting glimpses into what they’re really thinking and feeling are not as common as with typically developing children. What a gift the Lord gave me that day! I have treasured it in my heart ever since. I learned that even when it seems as though you're not getting through, you are.
Day 11- Timothy went through a really rough stage when Payton was a baby. He had so much trouble controlling his anger. He took it out on me for the most part. It didn’t matter who upset him, I was the one he hit. I tried not to take him out in public much during this time. We mostly stuck to the places where he was comfortable. There was one day, however, I couldn’t avoid going out with him. By the time I neared the end of my shopping, he was done! While in the store he got very angry and began shouting at me. I couldn’t get him calmed down and it escalated into him hitting me. We had to leave our groceries and get out of the store. I was wearing Payton in a sling, so I kept my arm stiffened to keep him from accidentally hitting her. On our way out, Benjamin fell down and started crying. So, there I was, wearing a baby in a sling on my chest, carrying a crying toddler on my back, and holding my arm out while holding on to Timothy so all he would be able to punch was my arm. Of course we made quite a scene and received many stares. One woman decided to do more than look. She came over to help me. Though there wasn’t much she could do, it meant so much that she didn’t just stare or judge, she offered to help. I don’t know her name, but I’ve never forgotten that moment.
Day 12- When he was in the first grade, I was invited to a Mother's Day party at Timothy's school. The morning of the party, he reminded me about it and wanted to make sure I was coming. After letting him know I would be there, I put him on the bus. Not too long after that, we got a phone call that my father-in-law had passed away. This meant that I would need to quickly get my family ready for a 12 hour drive back to Virginia. It’s no small task getting our family of seven ready for a road trip. It's especially difficult because Timothy has lots of food allergies. Stopping to eat along the way isn't an option for us, which means I have to prepare all of our food. When I thought of all the work facing me, the idea of heading to school for an hour or so seemed to be out of the question. I knew I had to go, however, even if I didn't have time because Timothy was expecting me to be there. It may not bother him, but then what if it did? I’m never really sure of how a situation will affect him. He could handle it without any problem, or it could upset him and affect his behavior for the rest of the day. I did as much as I could and then headed off to the school. It really was a touching scene with a room full of children and their mothers. Some children were getting plates of food for their moms. Others were showing them all the gifts they had made with love. Timothy was doing therapy, so I took in this moment while waiting for him. When he came into the room, he looked at me, looked around the room, and said, “Can I go?” Heartwarming right? After I told him that he could, his teacher apologetically handed me my gifts. I reassured her that I was fine. I've learned that I can't make those moments happen with him. I just have to enjoy them when they do come. I've also learned that those heartwarming moments don’t always look the same as they do with my other children. It's not that he doesn't show affection, it just looks different and comes at unexpected times.
Day 13- Timothy doesn't have many inhibitions. When he gets into a character, he’s all in. He wants to dress, talk, and act like whatever character has his attention. That leads to some interesting moments. Some moments are pretty funny. Some can be a little embarrassing. His Tarzan phase was pretty interesting. Thankfully, it didn't last long. We never got used to him running around in his tighty whities while beating on his skinny little chest. Others lead to lots of laughs and fun. If he hears music and wants to dance down the street, he does. If he wants to act like a pirate, he does. When we were out shopping one time, Timothy decided he was a spy. Instead of trying to make him stop, I joined him in his fantasy world. While the rest of our family was shopping, we “tracked down” Daddy all throughout the store. We hid behind racks of clothing, tip-toed across aisles, and made ourselves "invisible" by standing up against the wall. Daddy figured out our game and played along with us. We got a lot of strange looks that day, but my favorite look was the smile on Timothy’s face.
Day 14 (Today's story is from Timothy's older brother, Zachary)- One Sunday, on our way home from church Timothy was pretending to be a bear hunter. He stayed in this character all the way home and through lunch. After lunch Timothy said he was going outside to hunt a bear. When he left, my mom asked me to go put on our bear costume so he could “hunt” me. My dad took him out the front door while I went out the back door to hide. I was not for the idea in the beginning because I was about 10 years old and of course every 10 year old wants to be cool. Dressing up as a bear so your little brother can “hunt” you was NOT cool. At first Tim didn’t know I had put on the costume. He was still hunting a pretend bear. I kept sneaking through the yard trying to be spotted by him. When he finally saw me, his face was priceless. He chased me through the yard and shot me with his toy gun. BAM! I was down. Tim stood over me proud of his hunting skills. Then my dad told him to butcher the meat before it goes bad. Somehow the bear revived and quickly ran inside.
Day 15- I was a little nervous when we first started letting Tori babysit. Not because I thought she was irresponsible, but because I know how difficult it can be to keep up with Timothy. He’s so impulsive. He’s also very quick. Usually, I don’t see him cause the damage, I just find the evidence. One time Tori called us saying that we needed to come home. Thankfully, we were almost there anyway. Timothy didn’t want to watch the same movie as the rest of the children, so he asked if he could go downstairs and watch something else. Tori told him that he could and off he went. After 10 minutes or so, Tori asked Zachary to go check on him while she made the popcorn. When Zachary went downstairs he noticed water coming from the bathroom. When he opened the door, he saw the sink overflowing. Timothy had turned on the water, plugged the sink, and walked out. Not only was the bathroom flooded, but it had gone through the wall into Zachary and Benjamin’s room. It took a while to get all that water off the bathroom floor and out of the carpet in the boy’s room. Tori is a wonderful babysitter, but I joke that it’s because of all the experiences that Timothy has given her. There aren’t many situations Tori could come across as a babysitter that she hasn’t already encountered in our home. I think we should call it “Britt Babysitting Boot Camp”.
Day 16- We don’t do a lot of vacations. We’re more stay-cationers rather than vacationers. First, because as a larger family, it’s difficult to find places that we can all stay in for a reasonable price. Second, because it’s difficult to find a place that will capture Timothy’s attention as well as the rest of the family. In 2011, our family was able to spend a few days in Gatlinburg. This was also the same time of the cicada invasion. Timothy is afraid of any flying insect. By afraid I mean, when he sees one he screams, waves his arms frantically around his head, and takes off running. I thought we had a bunch at our house, but it was nothing compared to the number in the mountains. Every time we left our cabin, Timothy would panic all the way to the van. We worked out a plan to help him out. One of us would go to the van and stand by the door to wait for Timothy. Then someone else would open the cabin door for him and run out with him. As soon as he would get to the van, we’d open the door and then quickly close it behind him. He wasn’t satisfied until everyone was safely in the van without any cicada stowaways. If one happened to follow us into the van, I’m not sure I know words that would describe the scene accurately. Once we rid the van of intruders, it would take lots of convincing for him to believe us. So needless to say, when the cicadas invade again, it will definitely be stay-cation time!
Day 17(This story is from Timothy's sister, Tori)- In the summer of 2011, I had the opportunity to serve at a mission in Mexico. I had never been so far away from my family before. I also had never been away from them for more than a week. The morning I left, I was eating my breakfast and going over the details of my trip with my parents. When Timothy came out of his room, my mom told him this was the day I was leaving. She asked him if he had anything he wanted to say to me. Timothy turned, looked at me and asked, "Can I have your toast?" And that was my good-bye from him.
Day 18- Timothy is afraid of fire. Well, anything to do with fire really - smoke, burning smells, candles, fire alarms, etc. If he sees a lit candle, he won’t stop until he blows it out. We have to hold him back at birthday parties so he doesn’t blow out the candles before the birthday child can. If he sees a pot of boiling water, he’s convinced it’s on fire. One day, Tori was making grilled cheese sandwiches for lunch. The sandwiches got a little, shall we say, crispy. It didn’t make for the most pleasant of smells. Timothy was convinced there was a fire. It took a while to reassure him there wasn’t a fire, just a slightly overcooked sandwich. To this day when Tori starts to cook, Timothy says, “You aren’t going to cook are you? Is there going to be a fire? I don’t want mine cooked.” Once something gets into his head, it’s very difficult to get it out. I don’t know how long it will take for her to live that down.
Day 19- Making friends can be difficult for Timothy. He doesn’t really excel at social skills. If he thinks something, he says it. He doesn’t have a great concept of personal space. When he sees something he wants, he takes it (it doesn’t matter if someone else had it first). Adults tend to be more understanding of these behaviors than children. Timothy can be pretty intimidating without realizing it. He also doesn’t really play with other children. He mostly plays beside them. So, as you can imagine, he didn’t have a lot of friends. When he was in the 4th grade, he came home from school with a pirate book from the book fair. I hadn’t given him money yet to buy books, so I was a little curious. He told me that his friend, Maddie, bought it for him. Timothy has a way of pestering you when he wants something. He’s so persistent that he’s hard to resist. Now I’m thinking that he pestered this poor girl until she spent the money that was supposed to be for her, on him. I talked to his Special Ed. teacher the next day and she told me that wasn’t what happened at all. She told me that Maddie and Timothy really hit it off. She would come to get him each day to take him to his Regular Ed. class or to go to lunch. She knew how much he loved pirates, so she bought him the book and brought it to him. Not too long after that, I got a note from her. Maddie told me about the birthday party she was having and how she wanted Timothy to be there. It was such a sweet note. This was the first time Timothy had been invited to a birthday party. Others in our family had been invited to parties and Timothy was able to tag along. This time someone chose him and said that the rest of our family could tag along. I cried and cried after reading it. Once I pulled myself back together, I called the number she gave me in the letter. As I spoke with Maddie’s mom, Christy, I couldn’t hold back my tears. I told her how much it meant to me that Maddie included my son. Christy had no idea that Maddie had written me that letter. I also found out later that Christy heard a lot about Timothy, but never knew that he was autistic. Maddie always referred to him as her friend, not her autistic friend. I wish that everyone could see them together. They have such a special bond. Maddie’s friendship with Timothy has been a blessing to our entire family. As a bonus, we’ve been able to grow close to their entire family. Maddie and her family will forever have a special place in our hearts.
Day 20- Being the sibling of a special needs child can be very difficult. I’ve spent so much time in hospitals taking care of Timothy. That means I’ve also spent a great deal of time away from my other children. I remember one night in particular when Timothy was still little and I was on the phone with a doctor talking through his symptoms. The doctor came to the conclusion that we needed to yet again head to the ER and most likely he would need to be admitted to the hospital. I had no idea that my daughter was standing behind me for this phone call. As I hung up the phone and turned around, she said to me with big tears in her eyes, “You’re leaving again, aren’t you?” I’m sure you can imagine how this pierced right through my heart. It’s not just the times away that can be difficult for them. There are times that we have to let Timothy get away with things because either he just can’t process it properly or we have to pick our battles. It can be difficult to understand why he can do things they aren’t allowed to do, or he may not have to do things they are expected to do. We do have expectations for him, they just aren’t the same as our typically developing children. Then there are times we couldn’t go somewhere, or we had to leave a place early because Timothy couldn’t handle it. I even remember one time when Benjamin was telling me what he wanted for his birthday. He paused for a moment and then said, “Well, maybe I shouldn’t get that. Timothy will be able to break it too easily.” He was five years old and had to consider whether the toy was made well enough to enter our home. Timothy is very impulsive as well as very quick. You don’t usually see him breaking toys, you just come across the toy carnage. So, when I see the siblings of special needs children acting out, I try to put myself in their place, and try to understand what they may really be feeling.
Day 21- Timothy LOVES Disney movies! He gets completely engrossed in the characters and wants to act out scenes from the movies. He really loves Toy Story, Cars, Wreck It Ralph, and Peter Pan. Since he loves pirates, Peter Pan is the movie he’s loved the longest. My concern, though, is that he always wants to be the villain. Therefore, Captain Hook makes frequent appearances at the Britt house. He’s even gone so far as to make himself a hook for his hand. He took a plastic hanger and snapped the hook part off and then used that to poke a hole in the bottom of a plastic cup. He was then able to put the cup with the hook, over his hand. One day, I pointed out what a great character Peter was and suggested that Timothy be someone other than the villain. He took my advice, just not the way I had hoped. I found Timothy wearing Payton’s tu-tu the next day. He was acting out the scene where Tinker Bell stands over the mirror and sees her hips. He did the hand measurement and finished the scene with the shocked face at the size of his hips. The next morning, I found him sitting in the floor shirtless and both legs in one side of his pajama pants. He was acting out the scene where the mermaids were sitting on a rock, flipping their tails. After seeing that, I told him that I changed my mind. Being Captain Hook was fine with me.
Day 17(This story is from Timothy's sister, Tori)- In the summer of 2011, I had the opportunity to serve at a mission in Mexico. I had never been so far away from my family before. I also had never been away from them for more than a week. The morning I left, I was eating my breakfast and going over the details of my trip with my parents. When Timothy came out of his room, my mom told him this was the day I was leaving. She asked him if he had anything he wanted to say to me. Timothy turned, looked at me and asked, "Can I have your toast?" And that was my good-bye from him.
Day 18- Timothy is afraid of fire. Well, anything to do with fire really - smoke, burning smells, candles, fire alarms, etc. If he sees a lit candle, he won’t stop until he blows it out. We have to hold him back at birthday parties so he doesn’t blow out the candles before the birthday child can. If he sees a pot of boiling water, he’s convinced it’s on fire. One day, Tori was making grilled cheese sandwiches for lunch. The sandwiches got a little, shall we say, crispy. It didn’t make for the most pleasant of smells. Timothy was convinced there was a fire. It took a while to reassure him there wasn’t a fire, just a slightly overcooked sandwich. To this day when Tori starts to cook, Timothy says, “You aren’t going to cook are you? Is there going to be a fire? I don’t want mine cooked.” Once something gets into his head, it’s very difficult to get it out. I don’t know how long it will take for her to live that down.
Day 19- Making friends can be difficult for Timothy. He doesn’t really excel at social skills. If he thinks something, he says it. He doesn’t have a great concept of personal space. When he sees something he wants, he takes it (it doesn’t matter if someone else had it first). Adults tend to be more understanding of these behaviors than children. Timothy can be pretty intimidating without realizing it. He also doesn’t really play with other children. He mostly plays beside them. So, as you can imagine, he didn’t have a lot of friends. When he was in the 4th grade, he came home from school with a pirate book from the book fair. I hadn’t given him money yet to buy books, so I was a little curious. He told me that his friend, Maddie, bought it for him. Timothy has a way of pestering you when he wants something. He’s so persistent that he’s hard to resist. Now I’m thinking that he pestered this poor girl until she spent the money that was supposed to be for her, on him. I talked to his Special Ed. teacher the next day and she told me that wasn’t what happened at all. She told me that Maddie and Timothy really hit it off. She would come to get him each day to take him to his Regular Ed. class or to go to lunch. She knew how much he loved pirates, so she bought him the book and brought it to him. Not too long after that, I got a note from her. Maddie told me about the birthday party she was having and how she wanted Timothy to be there. It was such a sweet note. This was the first time Timothy had been invited to a birthday party. Others in our family had been invited to parties and Timothy was able to tag along. This time someone chose him and said that the rest of our family could tag along. I cried and cried after reading it. Once I pulled myself back together, I called the number she gave me in the letter. As I spoke with Maddie’s mom, Christy, I couldn’t hold back my tears. I told her how much it meant to me that Maddie included my son. Christy had no idea that Maddie had written me that letter. I also found out later that Christy heard a lot about Timothy, but never knew that he was autistic. Maddie always referred to him as her friend, not her autistic friend. I wish that everyone could see them together. They have such a special bond. Maddie’s friendship with Timothy has been a blessing to our entire family. As a bonus, we’ve been able to grow close to their entire family. Maddie and her family will forever have a special place in our hearts.
Day 20- Being the sibling of a special needs child can be very difficult. I’ve spent so much time in hospitals taking care of Timothy. That means I’ve also spent a great deal of time away from my other children. I remember one night in particular when Timothy was still little and I was on the phone with a doctor talking through his symptoms. The doctor came to the conclusion that we needed to yet again head to the ER and most likely he would need to be admitted to the hospital. I had no idea that my daughter was standing behind me for this phone call. As I hung up the phone and turned around, she said to me with big tears in her eyes, “You’re leaving again, aren’t you?” I’m sure you can imagine how this pierced right through my heart. It’s not just the times away that can be difficult for them. There are times that we have to let Timothy get away with things because either he just can’t process it properly or we have to pick our battles. It can be difficult to understand why he can do things they aren’t allowed to do, or he may not have to do things they are expected to do. We do have expectations for him, they just aren’t the same as our typically developing children. Then there are times we couldn’t go somewhere, or we had to leave a place early because Timothy couldn’t handle it. I even remember one time when Benjamin was telling me what he wanted for his birthday. He paused for a moment and then said, “Well, maybe I shouldn’t get that. Timothy will be able to break it too easily.” He was five years old and had to consider whether the toy was made well enough to enter our home. Timothy is very impulsive as well as very quick. You don’t usually see him breaking toys, you just come across the toy carnage. So, when I see the siblings of special needs children acting out, I try to put myself in their place, and try to understand what they may really be feeling.
Day 21- Timothy LOVES Disney movies! He gets completely engrossed in the characters and wants to act out scenes from the movies. He really loves Toy Story, Cars, Wreck It Ralph, and Peter Pan. Since he loves pirates, Peter Pan is the movie he’s loved the longest. My concern, though, is that he always wants to be the villain. Therefore, Captain Hook makes frequent appearances at the Britt house. He’s even gone so far as to make himself a hook for his hand. He took a plastic hanger and snapped the hook part off and then used that to poke a hole in the bottom of a plastic cup. He was then able to put the cup with the hook, over his hand. One day, I pointed out what a great character Peter was and suggested that Timothy be someone other than the villain. He took my advice, just not the way I had hoped. I found Timothy wearing Payton’s tu-tu the next day. He was acting out the scene where Tinker Bell stands over the mirror and sees her hips. He did the hand measurement and finished the scene with the shocked face at the size of his hips. The next morning, I found him sitting in the floor shirtless and both legs in one side of his pajama pants. He was acting out the scene where the mermaids were sitting on a rock, flipping their tails. After seeing that, I told him that I changed my mind. Being Captain Hook was fine with me.
Day 22- I mentioned in the previous post that Timothy loves pirates. Actually, he’s obsessed with them. During his recovery from a traumatic brain injury, the Child Life Specialist at the rehab hospital asked him what toys he liked to play with. He replied, “Pirates”. When she asked him what else he would like to play with if she couldn’t find any he answered, “Pirates”. Thankfully, deep in their storage, she found some pirates and a pirate ship. Captain Hook is his favorite. His copy of Peter Pan is also an anniversary edition. At the end of the movie there’s a documentary on the making of the film. I imagine most children wouldn’t sit and watch that, but Timothy isn’t like most children. He not only watched it, he memorized it. One night, as Brian was going to say good night to Timothy, he heard him reciting it. He was sitting in the dark, rocking, and reciting the entire thing. Timothy was even doing the British accents from the actor interviews. His love for pirates runs deep. Even in his dreams, he’s Captain Hook. It’s not uncommon to hear him yell out in the middle of the night, “Blast you Peter Pan!” One morning I woke him up and, in his best Captain Hook voice, he said, “Who dares to disturb my slumber?” I often wonder what it would be like to take him to Disney World. Would it excite him to see all these characters that he loves so much or would it overwhelm him? I don’t know but maybe one day we’ll find out.
Day 23- Timothy is a very sweet, loving child. It just may look a little different than other children. He’s not overly affectionate or a person prone to compliments. When he’s overwhelmed, he can be a little violent. Not fear for your safety violent, but enough to keep me on my toes. Once Timothy woke up after his brain injury and began moving around, I noticed that he was very affectionate. All throughout the day he would ask me to come closer so he could hug me. He would tell me that he loved me or that I was beautiful. It wasn’t just me though. As we made our way down the hallways of the rehab hospital, he would stop people and say, “You look like you need a hug.” This was all very new to me. I heard over and over from personnel at the hospital that the goal was to get Timothy as close to baseline as possible, meaning as close the way he was before the fall as possible. I would joke with them and say, “I’m ok if not everything goes back to baseline.” As I was discussing this with one of his therapists she told me that normally traumatic brain injuries can have the opposite effect. She told me how children with the sweetest dispositions before their injury became angry and difficult after. Now the opposite was happening with Timothy. We both became curious how big of a role his autism played in the difference. Either way, I just kept telling people that I was going to enjoy it while it lasted. It did last for a couple of weeks. Then one day I made Timothy do something in therapy that he didn’t like and I got bopped on the head. After that, the hugs and compliments diminished. So while it was just for a couple of weeks, it was fun while it lasted.
Day 24- Being at a rehab hospital in Atlanta was difficult for Timothy. Routine and familiar surroundings are important to him. We both missed our family. I noticed bedtime was the most difficult for him. Timothy seemed to cry and ask to go home at bedtime more than any other time of day. Then it dawned on me why. Every night at bedtime, Brian prays with Timothy. It doesn’t happen the same way as it does with our other children though. Timothy always tells his daddy he wants to pray by himself. Then when Brian says he can, off to his room he goes. Brian waits a few minutes and then goes into Timothy's room. When he asks Timothy what he prayed about, he begins to pray out loud. After he finishes, Brian prays. The same scene plays out night after night with Timothy pretending he doesn’t want his daddy to pray with him. I realized Timothy was sadder at bedtime because he really missed this prayer time with his daddy. Brian had questioned whether or not Timothy really wanted to have this time with him. When your child has autism, you have to learn how to read clues and then put all the pieces together. Our time in Atlanta showed me Timothy really does enjoy the time of prayer with his daddy.
Day 25- Confession time - I’m a little jealous of moms of children with an easily recognized disability. I know it sounds weird, but let me explain. It’s not that I think these moms have an easier time having children with a particular diagnosis. I know people who have children with a wide range of disabilities, so I know there are many trials and difficulties no matter what the official title may be. The reason I’m a little jealous is their diagnosis is easy to spot. I've noticed when you know immediately that a child has a disability, your interaction with them is different. Your expectations of their behavior is modified. If they did something odd, you’re more likely to excuse it based on their disability. When you look at Timothy, you don’t immediately recognize his autism. The people who know him, are well aware of his physical and mental differences. Strangers, however, just see a “normal” boy. So, when he does things that are inappropriate or just plain odd, we get some terrible looks. I still fight the urge to explain to everyone he comes in contact with about his autism, not that I need to discipline him more or that I’m a lazy parent. When he fell in August of 2012 and suffered a Traumatic Brain Injury, I got a glimpse of what it would be like. Before his hair grew back, you could easily see the large incision on the left side of his head. When we went out in public, I noticed that stranger’s expectations of him dropped and he was free to be himself. His hair has grown back now and his scar is less noticeable, but for a short time I got to experience what it was like to have strangers meet Timothy on his level.
Day 26- I mentioned in an earlier post how special Timothy’s friend, Maddie, is to us. After Timothy’s accident, she came to the hospital to visit him several times until he was sent to Atlanta. For one of her visits, Maddie went to the school’s library to find pirate books that he hadn’t seen yet so she could read to him. Timothy only lasted around five minutes after he agreed to let Maddie read the book. He became overwhelmed and began throwing himself around. Maddie apologized to me for upsetting him, but I assured her there was no reason to apologize. I asked Timothy several times if I could read him a book, but he always turned me down. Because of the special bond they share, Maddie was able to do something with Timothy that even I wasn’t able to do. Their friendship is such a beautiful thing to witness, I knew more people needed to know about it. I wanted the world to see how special their relationship is. When I contacted a local news station, they were eager to share their story. Here is a link to the news story: https://www.youtube.com/watch?v=JhBJ35MQNmY
Day 27- Some mornings Timothy wakes up determined to do whatever it takes to completely frustrate me. I try to be determined to not let Timothy frustrate me. He does everything he can to push every button I have. As I dig my feet in, to prove I won’t lose my temper, he digs his in deeper. Then, when I can’t take it anymore, I lose my temper and start yelling. What makes it worse is that he usually laughs at me. Sometimes I cry. Sometimes, I get really frustrated with myself. There have been times that I’ve wondered why God would choose me to be Timothy’s mother. Not because I don’t want to deal with him, but because I think surely there’s someone else who could do a much better job raising him. Someone with more patience, more experience. It’s a bad place to go. A place full of accusations and guilt. When I can’t trust my own thoughts, I have to trust what I know. God did choose me to be Timothy’s mother. If He chose me, He will equip me. When I feel I have messed up, I can find forgiveness and be filled again.
Day 28- I mentioned in an earlier post how difficult it can be on the siblings of a special needs child. While there are difficult times, there are also really special times. There are many things my children have learned by having Timothy in our family. They have learned to have compassion, learned to interact with someone who can be difficult, and learned to love sacrificially. I have witnessed many scenes of love for Timothy play out in our family. One time that stands out in particular took place on a trip to Atlanta for a follow up appointment. While we were at the doctor’s office, the fire alarms were being tested. I’ve heard a lot of fire alarms in my day, but none as loud and obnoxious as this one. We had finished our appointment and were trying to schedule the next one when the alarms went off. Timothy immediately began to panic. He was screaming, crying, and trying to cover his ears. I had Zachary, Benjamin, and Payton with me as well, so when he tried to take off running, it made the scene very chaotic. I managed to grab on to Timothy’s coat before he could get too far away from me. I struggled to hang on to him while trying to get my other children to hurry out of the building. The alarm seemed to be just as loud outside of the building as it was on the inside. Timothy continued panicking and trying to run. We had to walk a little ways to get back to our van in the parking garage. I managed to keep my grip on his coat and keep track of my other children. Once we got inside the van, his meltdown continued. I tried to drive away as quickly as I could, reassuring him that we were far away from that terrible noise. My reassurances didn’t seem to calm him down. That’s when Zachary stepped up in a way that warmed my heart and made me so proud. Knowing Timothy’s love of animals, Zachary started talking to him about animals. Even as Timothy kept crying, Zachary kept going. Eventually Timothy started to listen more and more to Zachary talk about animals. Then he went from listening, to talking with Zachary. The more Timothy talked about animals, the more he calmed down. I was one proud mom watching Zachary love his brother through such an upsetting time.
Day 23- Timothy is a very sweet, loving child. It just may look a little different than other children. He’s not overly affectionate or a person prone to compliments. When he’s overwhelmed, he can be a little violent. Not fear for your safety violent, but enough to keep me on my toes. Once Timothy woke up after his brain injury and began moving around, I noticed that he was very affectionate. All throughout the day he would ask me to come closer so he could hug me. He would tell me that he loved me or that I was beautiful. It wasn’t just me though. As we made our way down the hallways of the rehab hospital, he would stop people and say, “You look like you need a hug.” This was all very new to me. I heard over and over from personnel at the hospital that the goal was to get Timothy as close to baseline as possible, meaning as close the way he was before the fall as possible. I would joke with them and say, “I’m ok if not everything goes back to baseline.” As I was discussing this with one of his therapists she told me that normally traumatic brain injuries can have the opposite effect. She told me how children with the sweetest dispositions before their injury became angry and difficult after. Now the opposite was happening with Timothy. We both became curious how big of a role his autism played in the difference. Either way, I just kept telling people that I was going to enjoy it while it lasted. It did last for a couple of weeks. Then one day I made Timothy do something in therapy that he didn’t like and I got bopped on the head. After that, the hugs and compliments diminished. So while it was just for a couple of weeks, it was fun while it lasted.
Day 24- Being at a rehab hospital in Atlanta was difficult for Timothy. Routine and familiar surroundings are important to him. We both missed our family. I noticed bedtime was the most difficult for him. Timothy seemed to cry and ask to go home at bedtime more than any other time of day. Then it dawned on me why. Every night at bedtime, Brian prays with Timothy. It doesn’t happen the same way as it does with our other children though. Timothy always tells his daddy he wants to pray by himself. Then when Brian says he can, off to his room he goes. Brian waits a few minutes and then goes into Timothy's room. When he asks Timothy what he prayed about, he begins to pray out loud. After he finishes, Brian prays. The same scene plays out night after night with Timothy pretending he doesn’t want his daddy to pray with him. I realized Timothy was sadder at bedtime because he really missed this prayer time with his daddy. Brian had questioned whether or not Timothy really wanted to have this time with him. When your child has autism, you have to learn how to read clues and then put all the pieces together. Our time in Atlanta showed me Timothy really does enjoy the time of prayer with his daddy.
Day 25- Confession time - I’m a little jealous of moms of children with an easily recognized disability. I know it sounds weird, but let me explain. It’s not that I think these moms have an easier time having children with a particular diagnosis. I know people who have children with a wide range of disabilities, so I know there are many trials and difficulties no matter what the official title may be. The reason I’m a little jealous is their diagnosis is easy to spot. I've noticed when you know immediately that a child has a disability, your interaction with them is different. Your expectations of their behavior is modified. If they did something odd, you’re more likely to excuse it based on their disability. When you look at Timothy, you don’t immediately recognize his autism. The people who know him, are well aware of his physical and mental differences. Strangers, however, just see a “normal” boy. So, when he does things that are inappropriate or just plain odd, we get some terrible looks. I still fight the urge to explain to everyone he comes in contact with about his autism, not that I need to discipline him more or that I’m a lazy parent. When he fell in August of 2012 and suffered a Traumatic Brain Injury, I got a glimpse of what it would be like. Before his hair grew back, you could easily see the large incision on the left side of his head. When we went out in public, I noticed that stranger’s expectations of him dropped and he was free to be himself. His hair has grown back now and his scar is less noticeable, but for a short time I got to experience what it was like to have strangers meet Timothy on his level.
Day 26- I mentioned in an earlier post how special Timothy’s friend, Maddie, is to us. After Timothy’s accident, she came to the hospital to visit him several times until he was sent to Atlanta. For one of her visits, Maddie went to the school’s library to find pirate books that he hadn’t seen yet so she could read to him. Timothy only lasted around five minutes after he agreed to let Maddie read the book. He became overwhelmed and began throwing himself around. Maddie apologized to me for upsetting him, but I assured her there was no reason to apologize. I asked Timothy several times if I could read him a book, but he always turned me down. Because of the special bond they share, Maddie was able to do something with Timothy that even I wasn’t able to do. Their friendship is such a beautiful thing to witness, I knew more people needed to know about it. I wanted the world to see how special their relationship is. When I contacted a local news station, they were eager to share their story. Here is a link to the news story: https://www.youtube.com/watch?v=JhBJ35MQNmY
Day 27- Some mornings Timothy wakes up determined to do whatever it takes to completely frustrate me. I try to be determined to not let Timothy frustrate me. He does everything he can to push every button I have. As I dig my feet in, to prove I won’t lose my temper, he digs his in deeper. Then, when I can’t take it anymore, I lose my temper and start yelling. What makes it worse is that he usually laughs at me. Sometimes I cry. Sometimes, I get really frustrated with myself. There have been times that I’ve wondered why God would choose me to be Timothy’s mother. Not because I don’t want to deal with him, but because I think surely there’s someone else who could do a much better job raising him. Someone with more patience, more experience. It’s a bad place to go. A place full of accusations and guilt. When I can’t trust my own thoughts, I have to trust what I know. God did choose me to be Timothy’s mother. If He chose me, He will equip me. When I feel I have messed up, I can find forgiveness and be filled again.
Day 28- I mentioned in an earlier post how difficult it can be on the siblings of a special needs child. While there are difficult times, there are also really special times. There are many things my children have learned by having Timothy in our family. They have learned to have compassion, learned to interact with someone who can be difficult, and learned to love sacrificially. I have witnessed many scenes of love for Timothy play out in our family. One time that stands out in particular took place on a trip to Atlanta for a follow up appointment. While we were at the doctor’s office, the fire alarms were being tested. I’ve heard a lot of fire alarms in my day, but none as loud and obnoxious as this one. We had finished our appointment and were trying to schedule the next one when the alarms went off. Timothy immediately began to panic. He was screaming, crying, and trying to cover his ears. I had Zachary, Benjamin, and Payton with me as well, so when he tried to take off running, it made the scene very chaotic. I managed to grab on to Timothy’s coat before he could get too far away from me. I struggled to hang on to him while trying to get my other children to hurry out of the building. The alarm seemed to be just as loud outside of the building as it was on the inside. Timothy continued panicking and trying to run. We had to walk a little ways to get back to our van in the parking garage. I managed to keep my grip on his coat and keep track of my other children. Once we got inside the van, his meltdown continued. I tried to drive away as quickly as I could, reassuring him that we were far away from that terrible noise. My reassurances didn’t seem to calm him down. That’s when Zachary stepped up in a way that warmed my heart and made me so proud. Knowing Timothy’s love of animals, Zachary started talking to him about animals. Even as Timothy kept crying, Zachary kept going. Eventually Timothy started to listen more and more to Zachary talk about animals. Then he went from listening, to talking with Zachary. The more Timothy talked about animals, the more he calmed down. I was one proud mom watching Zachary love his brother through such an upsetting time.
Day 29(This story is from Timothy's older sister, Tori)- Timothy loves music! When he hears a song with a good beat, he can't resist the urge to dance and sing along. Whenever I drove Timothy anywhere, we would listen to my 80s playlist. If it wasn't on when we got in, he made sure to ask for it. We would always roll the windows down, turn the music up, and sing along. If it was a song he knew, he would sing along with reckless abandon. If he didn't know it, he would just play his air guitar and encourage my dramatic singing performance in the front seat. He would say, “Oh yeah! That’s right. Sing it Tori.” Either way we've always had a lot of fun jammin' to 80s music together.
Day 30- Our family rented a house for the first year we lived in Tennessee. When the time came to buy a house, we tried to stay in the same district so Timothy wouldn’t have to change schools again. That didn’t work out however, and he had to change schools. I was nervous since Timothy had done so well at his new school. I quickly realized God knew exactly what he needed and put him with, in my opinion, the best Special Ed teacher and Teacher Assistants around (Although, I’m still getting to know the middle school teacher and assistants, I think they’re pretty fabulous as well!). Timothy clicked with them right away and his learning continued. They were so invested in him and helping him learn everything he could. Even while he was in the hospital recovering from his Traumatic Brain Injury, they came to see him. They didn’t just come visit though. They had taken pictures of all his teachers and students from his Regular Ed and Special Ed classes to help him remember the people in his life. They put together some of his favorite activities that would also help with his recovery. His last day at Rock Springs Elementary was very sad for all of us. I had grown to love these beautiful women. At his 5th grade graduation party, Mrs. Martz played video she made of his years with them. We were all emotional. Our lives will forever be better because of Mrs. Martz, Mrs. Dangerfield, Ms. Susan, and Ms. Emily.
Day 31- As I wrap up this project, I want to share some final thoughts with all of you. What does autism look like in our family? It is frustrating, exhausting, heartbreaking, and difficult. It’s also rewarding, joy filled, hilarious, and life changing. Would I have chosen this path on my own? Probably not. Most of us, if given the choice, would want our days to be easy. I have learned that through the most difficult trials can come the greatest blessings. I used to say that I was blessed to have healthy children. I am no less blessed to have Timothy than my other children. Mostly, I am blessed because God is at work in our lives. He is using difficult circumstances to teach us how to be more like Him. My hope is that through reading our stories, you know a little more about our day-to-day life with autism. I also hope that if your life has been touched by autism, you have been inspired to share your story. Whether it’s one a day like I did, once a week, or just once, all that matters is that you share. Our children have so much to offer the world, but how will they know if we don’t tell them.
Day 31- As I wrap up this project, I want to share some final thoughts with all of you. What does autism look like in our family? It is frustrating, exhausting, heartbreaking, and difficult. It’s also rewarding, joy filled, hilarious, and life changing. Would I have chosen this path on my own? Probably not. Most of us, if given the choice, would want our days to be easy. I have learned that through the most difficult trials can come the greatest blessings. I used to say that I was blessed to have healthy children. I am no less blessed to have Timothy than my other children. Mostly, I am blessed because God is at work in our lives. He is using difficult circumstances to teach us how to be more like Him. My hope is that through reading our stories, you know a little more about our day-to-day life with autism. I also hope that if your life has been touched by autism, you have been inspired to share your story. Whether it’s one a day like I did, once a week, or just once, all that matters is that you share. Our children have so much to offer the world, but how will they know if we don’t tell them.
Bonus Video- My husband, Brian, and I put together a video of pictures from Timothy's life thus far. We enjoyed looking back and seeing how much he's grown and remembering all that the Lord has brought him through. You can't really see in these pictures how sick he actually was as a baby. I also don't have pictures from all of his surgeries and procedures. I think the words of this song say it best-
Scars and struggles on the way
But with joy our hearts can say
Never once, no we never walked alone.
I hope as you watch this video with his stories in your mind, you enjoy one more look at what autism looks like in our family.
https://www.youtube.com/watch?v=16raIdWIliQ
