I can't believe it is already March, and that Gavin will be graduating from the Pre-K CSA (Classroom for Students with Autism) at the Pawtucketville Memorial Elementary School. It feels like just yesterday I applied for a transfer to teach at P'Ville so that I could be close to him and be involved in his educational experience and growth. Gavin will be moving on to a K-2 CSA Program. We are not sure which school he will be assigned to as of yet. To say that I don't have anxiety in regards to him moving on would be a lie. I am anxiety ridden. Anxiety about him being at a different school, anxiety in regards to his progress. Anxiety about his transition.
With March comes kindergarten registration. The time of year when 4 (soon to be 5) and 5 year old children tour schools with their parents. The time of year when parents register their babies for kindergarten. Lately, I have been really sad thinking that I will never get to experience some of the same traditional things with Gavin that I got to experience with his two older brothers. Last week I saw a family touring our school with their child in hand. And of course I thought, "how come?" How come Gavin? As I was thinking this, a third grader walked past me and said, "Hi Gavin's mom!" I smiled, said hello, and thought, "That is right, I am Gavin's mom". My heart then smiled as I thought of how far Gavin has come.
Running continues to help clear my mind, however, sometimes it also makes me think long and hard about life's lessons. During a run last week I was thinking about autism speaking to me. I then realized that autism speaks to me each and every day. This is what I sometimes hear............
Dear Paula,
I entered your life June 29, 2008, however, we weren't formally introduced until almost two years later. I saw how you looked at me that first year. I saw your raw emotions, your fear, your guilt, your sadness, your grief. I witnessed first hand your determination. Determination to get to know me better, determination to unlock you boy's mind and teach him how to speak. You won that battle. Matter of fact, there are many battles that you and I have had. Some you have won, some you have lost. I have noticed that over the last two years our relationship has changed. You have learned not to battle with me anymore. At times, I do still see your fear, your guilt, your sadness, your grief. However, I don't see those times as frequently as I used to. Instead, I see you carry on. Carry on with unconditional love, acceptance, devotion, and determination. At times, you despised me. That look has also faded. You see, Paula, what you don't realize yet is that you have won the lottery. The lottery you have won doesn't consist of money. It consists of priceless life lessons that you will continue to learn from me. You won the lottery that day in June when Gavin came into your world. Your chances of winning were 1 in 88, and your boy was that 1. When your feelings of sadness creep up on you, then take a step back and remember to celebrate. Celebrate your win. You and I will continue to have long talks as to how to keep unlocking your Gavin's mind. Continue to look at me with your heart, for your love sees more clearly. Lastly, continue to carry on.
Your friend,
Autism
I have come to realize that, yes, I may not get to experience the same things with Gavin as I did with his two older brothers. Instead I get different experiences, and in my heart different doesn't mean less. I am learning to take a step back and celebrate my winnings. Some days are easier then others, but for now I will carry on.
Carrying on,
Paula
Saturday, March 9, 2013
Friday, February 8, 2013
Picture Perfect
Gavin is now beginning to be able to carry on simple conversations. Something I thought that he would never be able to do. He is able to answer basic questions about his day. He doesn't do this consistently, however, this is a huge accomplishment for him. The understanding of language is such a struggle for him. I honestly thought my son would never talk. So, for him to be able to tell me little things about his day is a dream come true. The other day our school principal, Mr. Stahl, read a story to Gavin's class. I asked Gavin if Mr. Stahl came to his class and read. He answered, "yes," I then asked him what story did Mr. Stahl read. He replied, "Jacket in the Snow." A small conversation that was picture perfect to me.
I found myself sitting on my bed staring into space this week. I guess you could say I was daydreaming. When my eyes came back into focus I noticed that I was staring at my special rosary beads. I call these rosary beads, "Aunt Claire's Rosary Beads." My sister had them made for me after our aunt Claire had passed. The beads are made from roses that were at Aunt Claire's wake and funeral. Aunt Claire's Rosary Beads are very special me. Not only do they represent my special aunt, these beads have been used to get me through my dark days of autism. The dark days of autism consist of days that are filled with sadness. Days of crying and feelings of defeat. Days when I fall asleep crying, and wake in the middle of the night, reach down, and feel the beads still beside me. Honestly, these beads got me through. They were something to hold when I felt sad and defeated. These beads brought me sunshine and hope. When I am having a bad day I now find myself reaching for Aunt Claire's Rosary Beads. I now refer to them as my miracle beads. I have a friend who is currently going through a dark time in her life. I have been thinking of loaning her the beads in hope that they bring her the same comfort that I received from them.
Staring at Aunt Claire's Rosary Beads got me thinking about the autism parents that don't have anything to get them through the bad days. I think we all need something. Something to give us hope and sunshine. Something to bring us out of the darkness and be able to see the rainbows. Something else I though of this week is all the progress Gavin has made. My colleagues and principal, Mr. Stahl, have all commented recently how far Gavin has come. How they are noticing his progress. It made me think back to the early autism days. The days that Gavin was receiving intensive early intervention. The days when I wondered if he would ever talk. The days where he couldn't make eye contact. The days when he used pictures to communicate instead of words. The days when I was first introduced to autism. Autism has taught me to not look too far ahead. It has taught me to watch for the obstacles and plan how to defeat them. It has taught me to always look in my rear view mirror. For when you look in that mirror you get a glimpse of how far you have come.
Lastly, everyone has a different view of picture perfect. Here is what picture perfect looks to me: Picture perfect flaps and stims. Picture perfect is rigid. Picture picture needs routine and structure. It needs visuals to learn. Picture perfect makes you smile when least expected. Picture perfect amazes you when something new is learned. Picture perfect works harder then anyone else I know. Picture perfect struggles with making eye contact. Picture perfect also has meltdowns when he can't express his wants or needs. Picture perfect loves sensory input. Picture perfect struggles with self regulation. Picture perfect loves unconditionally and accepts everyone for who they are. My picture perfect has autism. He is 1 in 88, and he is picture perfect to me.
Mother of a picture perfect boy,
Paula
Tuesday, January 1, 2013
Boogies with Milk and Cookies
We survived the holidays! Phew! Overall it was a difficult Thanksgiving. I ran out of steam around Thanksgiving. I was tired of being on this autism journey. The week of Thanksgiving I clocked 15 miles with my running sneakers. I realize now that running was helping me to escape. Escape from the autism meltdowns, escape from the stimming, escape from visuals, escape from autism. I wasn't really thankful on Thanksgiving. Instead, I continuously asked, "why?". I questioned my parenting skills, I questioned my stamina, I questioned and cursed. I also cried a lot. As I often tell my coworkers, "Crying cleanses the soul." Something I learned a long time ago from an amazing principal that I had the opportunity to spend 12 years of my teaching career with. Thank you, Ray Sierpina, for teaching me that tears help to cleanse.
I was hesitant to decorate for the holidays. I was dreading how the physical change in the house would affect Gavin. I can now say that he adjusted better than expected. He loved the Christmas tree and all the lights. He was the one turning the tree on each morning and evening. However, he also loved playing with any and all Christmas decorations. He broke quite a few decorations and ornaments. I realize now that I probably should have 'autism proofed' the house during the holiday season.
The weeks leading up to Christmas were up and down. We got on our autism roller coaster again. Some days were just down right difficult. The difficult days I refer to as the days of darkness. Days where Gavin struggled telling us what he needed or wanted. Days where he couldn't self regulate. Days where he would hit me, attempt to bite me, throw things, and scream. Then there were days that I refer to as our rainbow days. Days that Gavin was calm and was able to self regulate. Days that Gavin socialized with his brothers. Days that Gavin would say something that would make you smile. Days that he would grab a guitar, strum it, and sing Jingle Bells. I would remind myself to remember the rainbow days when we are having our days of darkness. In order to see the rainbow you need to go through the darkness.
Gavin continues to make great progress at school. We had an IEP meeting. His IEP will be amended, and, he will attend the regular Pre-K class for an hour per day. Basically, he will be with typically developing peers for an hour a day. Something I thought would never happen. Great news. His teacher, Lynne, and I have noticed a huge burst of language lately. When asked what he wanted for Christmas, he was able to tell us, trucks and dinosaurs. Gavin's new obsessions: trucks, Jurassic Park, and the Beatles. He loves the song, "Baby you can drive my car." He likes to have it on repeat play over and over again. He also loves to play it very loudly. I think it is his way of letting me know that he is the one in the driver's seat, not mama. The day before school vacation we had an all school assembly. The entire school was in the gym singing Christmas songs, and many parents were there also. After the songs, our principal, Mr. Stahl, announced over the microphone and in front of the entire school, the students who were nominated by their teachers for "We Try Our Best." The students who were nominated received a certificate. It is along the lines of student of the month. Once the students' names were called they had to walk across the gym and receive their certificate. I was ecstatic, surprised, amazed, and emotional when I heard, Mr. Stahl, say "Gavin Peters." All my students started cheering for Gavin. It was so difficult to hold back my tears. I had no idea that he had been nominated. Lynne prepared him so that he would walk across the gym and receive his certificate. Which he did without holding her hand. That was a rainbow day for us.
We tried to keep Christmas as low key as possible for Gavin. Christmas Eve consisted of our family ritual. Reading, The Night Before Christmas, and leaving cookies and milk for Santa and carrots for Rudolph. Gavin wanted to leave apples for Santa. He also wanted to leave Santa some boogies. As we were putting everything on a plate, I looked over and noticed Gavin picking his nose. Well, once you call attention to negative behavior you might as well as raise the white flag.
Gavin woke at 4 am Christmas morning. He didn't ask to open presents. He didn't ask if Santa had come. This is what he does often. Wakes and does not go back to sleep. I remember when we first got the autism diagnosis, a lot of people asked me if he slept. I then learned that many children on the autism spectrum have difficulty sleeping and have awful sleeping patterns. Gavin sleeps great some of the time, other times I am running on pure exhaustion from his out of sync sleeping pattern.
Both Gavin and I ended up with the stomach virus during the week. The virus for him lasted a couple of days. The worst part was that he couldn't tell me that he didn't feel good. I did notice the past couple of days that he is flapping and jumping a lot. I'm guessing it's due to his body fighting this awful virus. He becomes traumatized when he vomits. It is heartbreaking to watch. He usually yells, cries, and flaps. We have been trying to teach him that he needs to vomit in the toilet. I have spent days cleaning up vomit because he will be running around like he is fine one minute, then the next minute he is vomiting all over the place. Gavin woke around midnight this morning. He was yelling, "no! no!" in his sleep. My gut was telling me to get him to the bathroom. He began crying and flapping. The next thing I knew he was vomiting all over the bathroom. I called for Phil to come help. We managed to reassure him that he was ok, and hold his head over the toilet. After cleaning up the bathroom I glanced at the time. 12:10 am. It was a new year. Many people were out celebrating. Many were toasting with champagne. Many people were embracing their loved ones. I looked over at Phil and gave him a high five. A high five for helping me teach our boy to vomit in a toilet. A high five that we made it another year on this autism journey.
Before I fell back to sleep I thought of how this wasn't the path I would have chosen. I thought how I often see pictures of families on facebook and am jealous that all their children are typically developing children. I thought about how many families don't have to over plan holidays, don't have to worry about the fact of decorating their house for Christmas may throw 'off' their autistic child. I thought about my younger years before children. How I had my whole life planned out. I thought about champagne, new year's resolutions, celebrations, and midnight embraces. Then I thought about how much progress my boy has made. How much hard work has gone into his progress. I thought about boogies with milk and cookies. I may not have chosen this path, but there is a reason I was placed on it. I will never give up hope. I am slowly finding that key. This path has led me to bigger and greater things. It reminds me often that life isn't perfect. It reminds that you have to walk through the darkness in order to see the rainbow.
Enjoying the boogies with the milk and cookies,
Paula
I was hesitant to decorate for the holidays. I was dreading how the physical change in the house would affect Gavin. I can now say that he adjusted better than expected. He loved the Christmas tree and all the lights. He was the one turning the tree on each morning and evening. However, he also loved playing with any and all Christmas decorations. He broke quite a few decorations and ornaments. I realize now that I probably should have 'autism proofed' the house during the holiday season.
The weeks leading up to Christmas were up and down. We got on our autism roller coaster again. Some days were just down right difficult. The difficult days I refer to as the days of darkness. Days where Gavin struggled telling us what he needed or wanted. Days where he couldn't self regulate. Days where he would hit me, attempt to bite me, throw things, and scream. Then there were days that I refer to as our rainbow days. Days that Gavin was calm and was able to self regulate. Days that Gavin socialized with his brothers. Days that Gavin would say something that would make you smile. Days that he would grab a guitar, strum it, and sing Jingle Bells. I would remind myself to remember the rainbow days when we are having our days of darkness. In order to see the rainbow you need to go through the darkness.
Gavin continues to make great progress at school. We had an IEP meeting. His IEP will be amended, and, he will attend the regular Pre-K class for an hour per day. Basically, he will be with typically developing peers for an hour a day. Something I thought would never happen. Great news. His teacher, Lynne, and I have noticed a huge burst of language lately. When asked what he wanted for Christmas, he was able to tell us, trucks and dinosaurs. Gavin's new obsessions: trucks, Jurassic Park, and the Beatles. He loves the song, "Baby you can drive my car." He likes to have it on repeat play over and over again. He also loves to play it very loudly. I think it is his way of letting me know that he is the one in the driver's seat, not mama. The day before school vacation we had an all school assembly. The entire school was in the gym singing Christmas songs, and many parents were there also. After the songs, our principal, Mr. Stahl, announced over the microphone and in front of the entire school, the students who were nominated by their teachers for "We Try Our Best." The students who were nominated received a certificate. It is along the lines of student of the month. Once the students' names were called they had to walk across the gym and receive their certificate. I was ecstatic, surprised, amazed, and emotional when I heard, Mr. Stahl, say "Gavin Peters." All my students started cheering for Gavin. It was so difficult to hold back my tears. I had no idea that he had been nominated. Lynne prepared him so that he would walk across the gym and receive his certificate. Which he did without holding her hand. That was a rainbow day for us.
We tried to keep Christmas as low key as possible for Gavin. Christmas Eve consisted of our family ritual. Reading, The Night Before Christmas, and leaving cookies and milk for Santa and carrots for Rudolph. Gavin wanted to leave apples for Santa. He also wanted to leave Santa some boogies. As we were putting everything on a plate, I looked over and noticed Gavin picking his nose. Well, once you call attention to negative behavior you might as well as raise the white flag.
Gavin woke at 4 am Christmas morning. He didn't ask to open presents. He didn't ask if Santa had come. This is what he does often. Wakes and does not go back to sleep. I remember when we first got the autism diagnosis, a lot of people asked me if he slept. I then learned that many children on the autism spectrum have difficulty sleeping and have awful sleeping patterns. Gavin sleeps great some of the time, other times I am running on pure exhaustion from his out of sync sleeping pattern.
Both Gavin and I ended up with the stomach virus during the week. The virus for him lasted a couple of days. The worst part was that he couldn't tell me that he didn't feel good. I did notice the past couple of days that he is flapping and jumping a lot. I'm guessing it's due to his body fighting this awful virus. He becomes traumatized when he vomits. It is heartbreaking to watch. He usually yells, cries, and flaps. We have been trying to teach him that he needs to vomit in the toilet. I have spent days cleaning up vomit because he will be running around like he is fine one minute, then the next minute he is vomiting all over the place. Gavin woke around midnight this morning. He was yelling, "no! no!" in his sleep. My gut was telling me to get him to the bathroom. He began crying and flapping. The next thing I knew he was vomiting all over the bathroom. I called for Phil to come help. We managed to reassure him that he was ok, and hold his head over the toilet. After cleaning up the bathroom I glanced at the time. 12:10 am. It was a new year. Many people were out celebrating. Many were toasting with champagne. Many people were embracing their loved ones. I looked over at Phil and gave him a high five. A high five for helping me teach our boy to vomit in a toilet. A high five that we made it another year on this autism journey.
Before I fell back to sleep I thought of how this wasn't the path I would have chosen. I thought how I often see pictures of families on facebook and am jealous that all their children are typically developing children. I thought about how many families don't have to over plan holidays, don't have to worry about the fact of decorating their house for Christmas may throw 'off' their autistic child. I thought about my younger years before children. How I had my whole life planned out. I thought about champagne, new year's resolutions, celebrations, and midnight embraces. Then I thought about how much progress my boy has made. How much hard work has gone into his progress. I thought about boogies with milk and cookies. I may not have chosen this path, but there is a reason I was placed on it. I will never give up hope. I am slowly finding that key. This path has led me to bigger and greater things. It reminds me often that life isn't perfect. It reminds that you have to walk through the darkness in order to see the rainbow.
Enjoying the boogies with the milk and cookies,
Paula
Sunday, December 16, 2012
Faith, Hope, Love, and Inspiration
I started a new blog entry a few weeks back. I was slowly adding and saving updates about Gavin and our journey with autism. Today, I went ahead and deleted that entry. I have decided that this entry is going to be entirely different. This entry will be written about what I do 365 days of the year. No, I am not talking about being a mother of a special needs child. I am writing about being a special needs teacher.
I remember the day so clearly. I was a senior in high school. I was about to turn 18 years old. I had to decide what I wanted to do with the rest of my life. I remember the day I wrote it down, Special Education Teacher. I closed my eyes and dreamed about teaching in a small town. My dreams consisted of teaching students with learning disabilities. Students that needed a little bit of extra support academically to help them absorb the curriculum. Never in my wildest dreams did I ever dream or think about teaching "those" kids. "Those" kids being students with an emotional disability. I remember graduating from college and being offered my first teaching job in a public school system. I actually had two job offers on the table. One being in a high school resource room, the other being a teacher of "those" kids. That job offer came 19 years ago. 19 years ago I chose to be a teacher of "those" kids. The kids who have an emotional disability. "Those" kids are now considered "my" kids.
Some of my kids have bipolar disorder, schizophrenia, fetal alcohol syndrome, oppositional defiant disorder, obsessive compulsive disorder, mood disorder, and post traumatic stress disorder. Some of my kids have witnessed domestic violence and have experienced unspeakable trauma. I have experienced manic episodes, physically aggressive cycles, and watched them relive trauma. I have been spit at, kicked, punched, bruised, and bitten. I have had my hair pulled and been beaten with a shoe. I have had visits to the emergency room as well as multiple sessions of physical therapy due to injuries from some of my kids. Some of my kids have verbally threatened to bring a knife to school and stab me. Some of my kids have told me that they hate me and wanted to bring a gun to school to shoot me. Some of my kids have threatened to take their own life. Some would say that some of my kids suffer from a form of mental illness.
What do I say? I say that my kids struggle with making friends. My kids struggle with expressing their anger and frustration. I say that my kids are often misunderstood. I say that my kids are great kids. They are kids that need a teacher to believe in them. They are kids that need a system that doesn't fail them. They are kids that I will fight for. They are kids that I will work overtime to get them to appropriately express their anger. They are kids that are always on my mind. They are my kids!
I spent most of the day yesterday glued to the television. Watching the news coverage about the unspeakable tragedy that happened in Newtown, CT. I cried thinking of all those innocent children. I cried hearing about the teachers and staff that died protecting their students. I, like everyone else, wanted answers. Why did this happen? How could this happen? Some people blame it on the gun laws. Some people blame it on mental illness. We are always looking to blame someone or something. What happened in Newtown could happen anywhere. We, as a society, need to change. We need to believe in each child. We need to help the system so that it doesn't fail our children. We need to show kindness and love. We need to work together to rid this world of violence. We need to make this world a safe, loving, and accepting place.
Tomorrow I will go to school. I will greet each of my special kids with a smile. Some will smile back, some will come in angry, some will not make eye contact, some will come in exhausted, some will greet me with a hug. No matter how they look, no matter how they act, no matter what they say, no matter what they do, I will be thinking of four words. Faith, hope, love, and inspiration. I have faith in my students, I have hope for their future, I will show them love, and most of all they inspire me. Inspire me to work harder for them, inspire me to believe in them, inspire me to fight harder for them. 19 years ago I welcomed "those" kids into my life. "Those" kids changed my life. They are my teacher.
With faith, hope, love, and inspiration,
Paula Peters
Adjustment Teacher
I remember the day so clearly. I was a senior in high school. I was about to turn 18 years old. I had to decide what I wanted to do with the rest of my life. I remember the day I wrote it down, Special Education Teacher. I closed my eyes and dreamed about teaching in a small town. My dreams consisted of teaching students with learning disabilities. Students that needed a little bit of extra support academically to help them absorb the curriculum. Never in my wildest dreams did I ever dream or think about teaching "those" kids. "Those" kids being students with an emotional disability. I remember graduating from college and being offered my first teaching job in a public school system. I actually had two job offers on the table. One being in a high school resource room, the other being a teacher of "those" kids. That job offer came 19 years ago. 19 years ago I chose to be a teacher of "those" kids. The kids who have an emotional disability. "Those" kids are now considered "my" kids.
Some of my kids have bipolar disorder, schizophrenia, fetal alcohol syndrome, oppositional defiant disorder, obsessive compulsive disorder, mood disorder, and post traumatic stress disorder. Some of my kids have witnessed domestic violence and have experienced unspeakable trauma. I have experienced manic episodes, physically aggressive cycles, and watched them relive trauma. I have been spit at, kicked, punched, bruised, and bitten. I have had my hair pulled and been beaten with a shoe. I have had visits to the emergency room as well as multiple sessions of physical therapy due to injuries from some of my kids. Some of my kids have verbally threatened to bring a knife to school and stab me. Some of my kids have told me that they hate me and wanted to bring a gun to school to shoot me. Some of my kids have threatened to take their own life. Some would say that some of my kids suffer from a form of mental illness.
What do I say? I say that my kids struggle with making friends. My kids struggle with expressing their anger and frustration. I say that my kids are often misunderstood. I say that my kids are great kids. They are kids that need a teacher to believe in them. They are kids that need a system that doesn't fail them. They are kids that I will fight for. They are kids that I will work overtime to get them to appropriately express their anger. They are kids that are always on my mind. They are my kids!
I spent most of the day yesterday glued to the television. Watching the news coverage about the unspeakable tragedy that happened in Newtown, CT. I cried thinking of all those innocent children. I cried hearing about the teachers and staff that died protecting their students. I, like everyone else, wanted answers. Why did this happen? How could this happen? Some people blame it on the gun laws. Some people blame it on mental illness. We are always looking to blame someone or something. What happened in Newtown could happen anywhere. We, as a society, need to change. We need to believe in each child. We need to help the system so that it doesn't fail our children. We need to show kindness and love. We need to work together to rid this world of violence. We need to make this world a safe, loving, and accepting place.
Tomorrow I will go to school. I will greet each of my special kids with a smile. Some will smile back, some will come in angry, some will not make eye contact, some will come in exhausted, some will greet me with a hug. No matter how they look, no matter how they act, no matter what they say, no matter what they do, I will be thinking of four words. Faith, hope, love, and inspiration. I have faith in my students, I have hope for their future, I will show them love, and most of all they inspire me. Inspire me to work harder for them, inspire me to believe in them, inspire me to fight harder for them. 19 years ago I welcomed "those" kids into my life. "Those" kids changed my life. They are my teacher.
With faith, hope, love, and inspiration,
Paula Peters
Adjustment Teacher
Thursday, November 22, 2012
A letter to my firstborn on his birthday
Dear William,
12 years ago today at 3:27 p.m., I became a mother. 12 years ago today I began an incredible journey of motherhood. It feels like 12 years have gone by in a blink of an eye. I remember when you were placed in my arms for the first time. The sight of you took my breath away. I remember the first time you smiled. I remember your first word, your first step, your first day of kindergarten. I remember the day you became a big brother. I experienced so many "motherhood firsts" with you.
I notice what a kind hearted young man you are growing into. I am so incredibly proud of you. I often find myself stopping what I am doing to watch you interact with your baby brother. You make him laugh and you teach him about unconditional love. I appreciate your honesty, and hope that you will always be willing to tell me how you feel and what you are thinking. I know that there are days that you despise autism being in your life. I know there are some days that you wish things could be different. William, some days I have the same wish. I know in my heart that autism is helping to shape you into a better person. You can now pick autism out in a crowd. You are leading a road to acceptance and understanding. You recognize special needs in different people. You acknowledge that it is ok to be different. I love how you have nicknames for your little brothers, and I love how they look at you with such love in their hearts.
I dream about your future. I dream about where you will go to high school, which college you will attend. I dream about which career path you will take. I dream about the day you become a father. I hope and pray that life will be kind to you. Thanks for loving your brothers. Thank you for guiding them, having patience, and being a great role model. Thank you for choosing me to be your mom. Happy birthday to my firstborn son. I love you.
Love,
Mom xoxo
Thursday, November 8, 2012
The Middle of the Avenue
I recently read a blog written by a mom with a child who has autism. She wrote about how she has read blogs written by other moms who either love autism or hate it. She, herself, wrote how she falls in the middle of the road. She does not love it, nor does she hate it, she is learning to live with it. I often ask myself, do I hate autism, or do I love it? Am I a middle of the road person? Which side of Autism Ave do I stand on? I guess my answer depends on the day of the week, the moment in time. I find myself some days standing on the "Love" side of Autism Ave, while other days, I can be found standing on the "Hate" side of the avenue. Heck, there are even some days that I, myself, am standing in the middle. Some days I am waving a white flag, some days I am heavily armed, sleeves rolled up, waiting to use my plethora of weapons (visuals, timers, schedules, social stories, sensory activities, positive behavioral supports). There are even some days I am sitting in the middle of Autism Avenue attempting to put the pieces of the puzzle together.
Gavin continues to be seeking sensory input. We began brushing him every two hours again. Overall, he has a very high energy level and is looking for input. It is like he has a motor that never stops. We have seen a decrease in this behavior since we started brushing him two weeks ago. I have also noticed that the full moon affects him. He sleeps less and is a ball of non stop energy when the moon is full. We had a big milestone a couple of weeks ago. Gavin learned to drink from a cup. We have been working on this at home for the past two years. It took him a long time to drink using a straw. Then we moved on to drinking from an open cup. We have been working on this since he was diagnosed. He finally was able to do this two weeks ago. The feeling of excitement I had was similar to watching your child take his/her first steps. So, goodbye sippy cups. We have moved on! These are the little things that make me love autism. This is the side of Autism Ave that makes me realize that learning to drink from an open cup is a small thing that means a lot.
Gavin had a successful Halloween. He was spider man. We practiced all month; putting his costume on, saying trick or treat, opening his trick or treat bag, and saying thank you. Gavin was able to do all these things. Again, which reminds me of the little things that count, the love side of Autism Avenue. I could tell that Gavin was finished trick or treating when he was attempting to push through the person at the door, and barge into their house. I had to physically redirect him away from the house, which led him to scream loudly, which led to stares from people. This is when I jump over to the hate side of Autism Ave.
Gavin has been screaming a lot at home lately. Ear piercing screaming, that makes almost everyone cover their ears. It is frustrating and heartbreaking when this happens. Frustrating because you want it to stop, heartbreaking because he can't communicate WHY he is doing this. When Gavin screams it usually results in someone yelling back at him. I have been trying to point this out to everyone, and get them to work on not yelling at him. I have noticed that William's patience level with Gavin has decreased a lot lately. He is easily frustrated with him. I often hear him say, "stupid autism." Last week William came home and said, "Mom, I met Jacob's little brother today. He is the same age as Gavin. I kept thinking to myself, so this is what it would feel like to have a 4 year old brother without autism." I had to walk away, I had to hide my tears. This is the side of Autism Ave that I hate! This is the side that makes me mourn. I am grateful for William's honesty. I think he too mourns for a 4 year old brother without autism.
Last night, William had basketball, when he arrived home, Gavin ran to him and said, "William, how's basketball?" William gave Gavin a hug and said, "Gavin, basketball was good." This is the side of Autism Avenue that I love. The side that is teaching William to love unconditionally. Gavin has been asking a lot of questions lately. For example, he will say, "How's basketball? How's football? How's work?" He will also ask, "Where's Landon? Where's Lynne? Where's Papa?" He will ask the same question over and over again even though you give him the same answer over and over again. I know that some people can get frustrated that he repeatedly asks the same question. I, on the other hand, waited a long time to hear my boy talk. I wasn't sure if he would ever talk. So, hearing his voice is a gift. I will always listen to his repeated questions, and I will always answer. Another recent struggle is keeping his seat belt on while driving. He is always unbuckling it. A few times he jumped out of the car while I was pulling into a parking space, or the garage at home. We have tried social stories and visuals. So, my last resort is a seat belt lock. I have ordered one and am waiting for it to arrive. Seat belt locks are on the hate side of the avenue.
Autism has not only affected my life, it has affected my boy, as well as my entire family. It has changed me. I will never be able to look at a newborn baby again without wondering if he or she will be affected by autism. I will always wonder why and what I did wrong. I will continue to walk down the middle of Autism Avenue. Some days I will step on over and embrace autism. Other days I will pick up my weapons, roll up my sleeves, and fight autism with all my strength. Along my travels, I will vent, cry, laugh, hug, curse, dance, learn, and love unconditionally. Some days I will be on the left, some days on the right, some days in the middle. Gavin will lead me, he will teach me. Because of him I am a better person.
Loving unconditionally,
Paula
Gavin continues to be seeking sensory input. We began brushing him every two hours again. Overall, he has a very high energy level and is looking for input. It is like he has a motor that never stops. We have seen a decrease in this behavior since we started brushing him two weeks ago. I have also noticed that the full moon affects him. He sleeps less and is a ball of non stop energy when the moon is full. We had a big milestone a couple of weeks ago. Gavin learned to drink from a cup. We have been working on this at home for the past two years. It took him a long time to drink using a straw. Then we moved on to drinking from an open cup. We have been working on this since he was diagnosed. He finally was able to do this two weeks ago. The feeling of excitement I had was similar to watching your child take his/her first steps. So, goodbye sippy cups. We have moved on! These are the little things that make me love autism. This is the side of Autism Ave that makes me realize that learning to drink from an open cup is a small thing that means a lot.
Gavin had a successful Halloween. He was spider man. We practiced all month; putting his costume on, saying trick or treat, opening his trick or treat bag, and saying thank you. Gavin was able to do all these things. Again, which reminds me of the little things that count, the love side of Autism Avenue. I could tell that Gavin was finished trick or treating when he was attempting to push through the person at the door, and barge into their house. I had to physically redirect him away from the house, which led him to scream loudly, which led to stares from people. This is when I jump over to the hate side of Autism Ave.
Gavin has been screaming a lot at home lately. Ear piercing screaming, that makes almost everyone cover their ears. It is frustrating and heartbreaking when this happens. Frustrating because you want it to stop, heartbreaking because he can't communicate WHY he is doing this. When Gavin screams it usually results in someone yelling back at him. I have been trying to point this out to everyone, and get them to work on not yelling at him. I have noticed that William's patience level with Gavin has decreased a lot lately. He is easily frustrated with him. I often hear him say, "stupid autism." Last week William came home and said, "Mom, I met Jacob's little brother today. He is the same age as Gavin. I kept thinking to myself, so this is what it would feel like to have a 4 year old brother without autism." I had to walk away, I had to hide my tears. This is the side of Autism Ave that I hate! This is the side that makes me mourn. I am grateful for William's honesty. I think he too mourns for a 4 year old brother without autism.
Last night, William had basketball, when he arrived home, Gavin ran to him and said, "William, how's basketball?" William gave Gavin a hug and said, "Gavin, basketball was good." This is the side of Autism Avenue that I love. The side that is teaching William to love unconditionally. Gavin has been asking a lot of questions lately. For example, he will say, "How's basketball? How's football? How's work?" He will also ask, "Where's Landon? Where's Lynne? Where's Papa?" He will ask the same question over and over again even though you give him the same answer over and over again. I know that some people can get frustrated that he repeatedly asks the same question. I, on the other hand, waited a long time to hear my boy talk. I wasn't sure if he would ever talk. So, hearing his voice is a gift. I will always listen to his repeated questions, and I will always answer. Another recent struggle is keeping his seat belt on while driving. He is always unbuckling it. A few times he jumped out of the car while I was pulling into a parking space, or the garage at home. We have tried social stories and visuals. So, my last resort is a seat belt lock. I have ordered one and am waiting for it to arrive. Seat belt locks are on the hate side of the avenue.
Autism has not only affected my life, it has affected my boy, as well as my entire family. It has changed me. I will never be able to look at a newborn baby again without wondering if he or she will be affected by autism. I will always wonder why and what I did wrong. I will continue to walk down the middle of Autism Avenue. Some days I will step on over and embrace autism. Other days I will pick up my weapons, roll up my sleeves, and fight autism with all my strength. Along my travels, I will vent, cry, laugh, hug, curse, dance, learn, and love unconditionally. Some days I will be on the left, some days on the right, some days in the middle. Gavin will lead me, he will teach me. Because of him I am a better person.
Loving unconditionally,
Paula
Thursday, October 11, 2012
The Rice Between My Toes
Overall, it has been a long difficult emotional week. I have visited homework hell where at each corner was a new project waiting to be finished, tests and quizzes to study for, and homework assignments to complete. No, I am not talking about my homework, I am talking about William and Landon's homework. William is very good about completing his homework, studying, and working on his projects. Landon, on the other hand needs a fire lit under him. He will drag his feet until the last minute. Not sure who he takes after, but I know it's not me. ;) Our homework sessions this week have been exhausting, especially after a six hour day of teaching students with an emotional disability. Just when I thought my trip to homework hell is over, I then enter self regulation hell. It's been an overall difficult week for Gavin in regards to his self regulation. It's like he is crawling out of his skin. It's been difficult for him to sit still, and his sleeping pattern has changed. I noticed last night that he has a rash on his behind. Not sure if it is dry skin or is caused from yeast. Gavin has had quite a few yeast rashes. Which now leads me to think....hmmmm...Gluten or no gluten? He had his four year check up last week. I can't say enough good things about our pediatrician, Lisa Sevigny. She is the one who agreed with Phil, and saw the autism red flags. She is the one who made us pursue every avenue. She is the reason we started early intervention, and got Gavin the services he needed. I will be forever grateful to her for this. She told me last week how happy she is with all his progress, and how great he is doing. I remember Gavin's eighteen month check up like it was yesterday. He didn't talk, he didn't make eye contact, he ran around in circles in the exam room and stimmed off the lights. I remember, Dr. Sevigny's soft spoken voice. I remember her telling me she thought he had autism. I remember clearing my throat and saying, "Oh, ok.", and thinking not my kid. Clearly she is overreacting. Last week, she told me that she had no recommendations because I have everything covered and am on top of it. It was music to my ears. Then I thought about how much additional work comes with raising a child with special needs. I was thinking back this week to two years ago when Gavin was receiving 25 hours of intensive early intervention. William was sick for days. I was finally able to get him to the doctor after three days of a high temp and of him complaining about how sick he was. He ended up having strep, and was out of school for a total of four days. I think back to that time and remember how Phil had just started his new job in Billerica as an assistant principal. How the burden of juggling the household, the kids, and Gavin's therapy schedule rested on me. It was such a demanding and draining year, and we celebrated when it was over. Last year was a bit more relaxed. This school year seems to have started out with a busy bang. Phil has enrolled in a C.A.G.S. Program. (Certificate Advanced Graduate Studies). He is currently working on becoming certified as a school superintendent, and then his next step will be working towards his PhD. So, this is part of the reason the year has started off so busy. The majority of the homework burden rests on me, as well as attempting to schedule additional speech and OT evals and services for Gavin. The one thing I am realizing about having a child with special needs is that not only are their needs special, but they also consist of additional therapy needs outside of school. This is something I have been dragging my feet about for the past year, and it now has to happen. Especially with Gavin's sensory needs that seem to keep shifting. I am also working on cleaning up the basement and creating him a sensory space that consists of an indoor swing, a trampoline, as well as different sensory play stations. I just have to find the spare time to work on it.
So, to revisit the mention of gluten. At Gavin's check up last week, Dr. Sevigny asked if I would ever consider a gluten free diet. I told her that I wasn't sure. I was still on the fence about it. She suggested that maybe try it during the summer months. This way I wouldn't be teaching full time and would have more time to focus on eliminating the gluten from his diet. I just may try it this summer, and collect data. The data will help me answer the question....gluten or gluten free?
Last week I walked into the bathroom to find Gavin standing in the toilet splashing water all over himself. He had both feet in. Luckily there was nothing in the toilet. I immediately filled the bathtub, and he spent well over an hour in there. Then it dawned on me. He is missing the pool. He no longer is able to swim for hours each day. Probably one of the reasons he has been crawling out of his skin lately. He then asked me for a rice bucket. A rice bucket? Ok, Gav, one rice bucket coming up. We took a trip to the dollar store, stocked up on bags and bags of rice, and created one rice bucket. Gavin now uses his rice bucket each day. He loves it. The only negative.....there is rice all over my house! Every time I turn around I am stepping on rice.
We have started practicing for Halloween. Gavin has tried on several of William and Landon's old costumes. This has been our October ritual since the AD (autism diagnosis). We practice wearing costumes, holding a candy bag, and saying, "Trick or Treat." I will create a social story about Halloween for him to read with the hope that it will help him to make sense of putting on a costume and going trick or treating.
I have recently starting running again. Running is something I haven't done since BC (before children). My oldest will be twelve next month. So, I can't believe it's been twelve years since I was an avid runner. I am currently running 9 to 10 miles per week. I am finding that running is helping to save my life. My life as a mom with a son with autism. Running clears my mind and helps to focus it on what is really important. It reminds me to leave behind all the meaningless things. It helps to focus me on this journey.
As always, thanks for checking in. Not only does running save my life, but my family and friends do also. They listen when I'm down, they catch me when I fall, they love me for who I am, and support me as a person, a friend, and most importantly as a mom on an autistic journey. I continue to travel along on this journey called autism. I make mistakes, I succeed, I cry, I mourn, I laugh, I second guess, but most importantly, I enjoy the rice between my toes.
Enjoying the rice,
Paula
So, to revisit the mention of gluten. At Gavin's check up last week, Dr. Sevigny asked if I would ever consider a gluten free diet. I told her that I wasn't sure. I was still on the fence about it. She suggested that maybe try it during the summer months. This way I wouldn't be teaching full time and would have more time to focus on eliminating the gluten from his diet. I just may try it this summer, and collect data. The data will help me answer the question....gluten or gluten free?
Last week I walked into the bathroom to find Gavin standing in the toilet splashing water all over himself. He had both feet in. Luckily there was nothing in the toilet. I immediately filled the bathtub, and he spent well over an hour in there. Then it dawned on me. He is missing the pool. He no longer is able to swim for hours each day. Probably one of the reasons he has been crawling out of his skin lately. He then asked me for a rice bucket. A rice bucket? Ok, Gav, one rice bucket coming up. We took a trip to the dollar store, stocked up on bags and bags of rice, and created one rice bucket. Gavin now uses his rice bucket each day. He loves it. The only negative.....there is rice all over my house! Every time I turn around I am stepping on rice.
We have started practicing for Halloween. Gavin has tried on several of William and Landon's old costumes. This has been our October ritual since the AD (autism diagnosis). We practice wearing costumes, holding a candy bag, and saying, "Trick or Treat." I will create a social story about Halloween for him to read with the hope that it will help him to make sense of putting on a costume and going trick or treating.
I have recently starting running again. Running is something I haven't done since BC (before children). My oldest will be twelve next month. So, I can't believe it's been twelve years since I was an avid runner. I am currently running 9 to 10 miles per week. I am finding that running is helping to save my life. My life as a mom with a son with autism. Running clears my mind and helps to focus it on what is really important. It reminds me to leave behind all the meaningless things. It helps to focus me on this journey.
As always, thanks for checking in. Not only does running save my life, but my family and friends do also. They listen when I'm down, they catch me when I fall, they love me for who I am, and support me as a person, a friend, and most importantly as a mom on an autistic journey. I continue to travel along on this journey called autism. I make mistakes, I succeed, I cry, I mourn, I laugh, I second guess, but most importantly, I enjoy the rice between my toes.
Enjoying the rice,
Paula
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