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
Sunday, December 16, 2012
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
Saturday, September 29, 2012
For the Love of the Game
This past week has been difficult for Gavin. His sensory needs seemed to stabilize the second week of school. This past week his entire sensory integration system shifted. I was continuously reminding him to take his hands out of his pants, or out of his shirt. He also wanted continuous oral motor input. He would either be making noises with his tongue, spit, mouth, stuff his mouth with food, or want to continuously eat and eat and eat. By Wednesday, he was on overload, while all I wanted to do at this point was curse autism for the hold it had on my boy. I was left guessing as to what caused the shift. What caused autism to grab and hold tighter. I had two guesses. One being the change of the seasons. The transition of wearing shorts and short sleeves to long pants and long sleeves. The other reason being the full moon! Gavin spent some time outside this morning. When he came in, he looked at me and said, "pj's, pj's." He then spent the rest of the afternoon lounging in his pj's. The quiet before the storm.....late this afternoon I took a look at him and noticed it. His eyes said it all. He was sick. Sure enough, his temp was 103. So, now I am thinking or should I say guessing that his sensory shift was due to him getting sick. He worked so hard to regulate himself this week, and struggled so hard to do this. When this happens, autism clenches, holds tight, and puts up a fight to loosen its grip.
Lately when Gavin wants something he will ask you in a form of a question. For example, he will say, "Mama, do you want peanut butter toast?" My response will be, "No Gavin, I do not want peanut butter toast." He will keep asking you over and over again until you ask him, "Gavin do you want peanut butter toast?" His response will be, "yes!" We are currently working on teaching him how to ask for things without asking if you want it. Just one of our many autism struggles.
With the changing of the season, comes the changing of sports and activities. My boys have transitioned from summer basketball to football and scouting. Football is such a great outlet for William.
Gavin has attended all of William's football games. Overall, he has done well. He enjoys walking up and down the bleachers during the games. I usually am crossed eyed by the end of the game from attempting to keep one eye on Gavin and the other eye on the game. After each game, Gavin loves to carry William's football equipment to the car. I am guessing he gets a lot of sensory input by carrying the heavy equipment.
Landon enjoys participating in boy scouts and will be starting fall basketball soon.
Recently I have thought about what sport Gavin would be playing if autism didn't have a hold on him. Would he want to try soccer? T-ball? Would he want to ski? I see pictures of 4 years olds who are playing their first sport, and I become envious. Envious that these little boys and girls will find a sport, and play for the love of the game. I recently told my two older boys that we need to try to find a sport that Gavin can understand and play. Maybe he will like football? Their response was, "Mom, Gavin has autism. He won't be playing sports." My reply, "Yes, Gavin does have autism, however, we will help him do anything he wants to do. We are a team. We will help him understand sports through his eyes, and play for the love of his understanding of the game."
Autism, you continue to have a hold on my boy. Sometimes your grip is tighter, and sometimes it loosens a bit. We celebrate our victories and pick ourselves up from our defeats. Autism, you are my game, and I am learning to play for the love of the game. Thank you for the reality check this week. As much as you sometimes defeat me, you also remind me of what is important.
Playing for the love of the game,
Paula
Lately when Gavin wants something he will ask you in a form of a question. For example, he will say, "Mama, do you want peanut butter toast?" My response will be, "No Gavin, I do not want peanut butter toast." He will keep asking you over and over again until you ask him, "Gavin do you want peanut butter toast?" His response will be, "yes!" We are currently working on teaching him how to ask for things without asking if you want it. Just one of our many autism struggles.
With the changing of the season, comes the changing of sports and activities. My boys have transitioned from summer basketball to football and scouting. Football is such a great outlet for William.
Gavin has attended all of William's football games. Overall, he has done well. He enjoys walking up and down the bleachers during the games. I usually am crossed eyed by the end of the game from attempting to keep one eye on Gavin and the other eye on the game. After each game, Gavin loves to carry William's football equipment to the car. I am guessing he gets a lot of sensory input by carrying the heavy equipment.
Landon enjoys participating in boy scouts and will be starting fall basketball soon.
Recently I have thought about what sport Gavin would be playing if autism didn't have a hold on him. Would he want to try soccer? T-ball? Would he want to ski? I see pictures of 4 years olds who are playing their first sport, and I become envious. Envious that these little boys and girls will find a sport, and play for the love of the game. I recently told my two older boys that we need to try to find a sport that Gavin can understand and play. Maybe he will like football? Their response was, "Mom, Gavin has autism. He won't be playing sports." My reply, "Yes, Gavin does have autism, however, we will help him do anything he wants to do. We are a team. We will help him understand sports through his eyes, and play for the love of his understanding of the game."
Autism, you continue to have a hold on my boy. Sometimes your grip is tighter, and sometimes it loosens a bit. We celebrate our victories and pick ourselves up from our defeats. Autism, you are my game, and I am learning to play for the love of the game. Thank you for the reality check this week. As much as you sometimes defeat me, you also remind me of what is important.
Playing for the love of the game,
Paula
Saturday, September 1, 2012
You Can't Always Get What You Want.
This week we began a new school year. Gavin started his second year in Pre-school. He continues to attend the Pawtucketville Memorial Elementary School where he is a student in a self contained PDD classroom. What I mean by self contained is that all the students in his classroom have an Autism Spectrum Disorder.
I noticed that while preparing for his first week of school the anxiety began building. Anxiety over another transition, anxiety over another change in routine. I felt I was doing good by marking it on the calendar and reminding him, and having a back to school countdown. I tried really hard to stay one step ahead of Gavin. I attempted to read his moods, his frustration, his anxiety. His shift in behavior this time came in the form of oral motor. I noticed this shift in wanting sensory oral input during summer school. Gavin began grinding his teeth. The grinding was very loud and distracting. Gavin used to grind his teeth a lot after his initial autism diagnosis. During ABA therapy sessions we would attempt to get him to imitate our vocal sounds to distract him from the teeth grinding. During summer school his teacher, Lynne, used visual pictures that would represent "quiet teeth". The teeth grinding seemed to fade during the summer, however, as summer progressed and we got closer to going back to school then he needed constant oral motor input. Gavin would constantly be looking for food (mostly crunchy). He would stuff the food into his mouth to the point where he would have to spit it out or choke. Sometimes he would vomit from all the stuffing of food. If he wasn't stuffing food into his mouth, then he was attempting to find input other ways, like clicking his tongue, swishing his spit back and forth, doing raspberries on some one's arm, biting furniture, biting himself, and biting me. This need for oral motor input got progressively worse as the summer went on and finally peaked this week (his first week back to school). I noticed the week before school started that even though he was needing continuous oral input, he was also talking. He was using a lot of words. That stopped this week. The first two days of school, Gavin didn't talk. He spent his days being echolalic (repeating back everything that was said to him). It broke my heart and made my anxiety build. I thought, is this it? Will he continue to regress? Will my once verbal child become strictly echolalic? It kept me awake for most of the week and it kept my anxiety building. Lynne and I met Thursday before school. She did a lot of questioning, I answered, she consulted with our BCBA, Christine. Christine suggested some new strategies to try in regards to the oral input and Lynne was able to pin point that Gavin was struggling because most of the kids he was in class with last year have moved on to different schools. Gavin was actually beginning to call for his friends. We think that he was having difficulty being with new kids, and was wondering where his friends were, however, he couldn't tell us this. Instead he just stopped talking.
From the moment each one of my children were born I already had a piece of their future mapped out. A consistent location on that map consisted of St. Louis Elementary School. My father graduated from this same school, and I graduated from St. Louis Academy. So, I planned and dreamed of each one of my boys attending this same school and developing their minds academically, socially, and spirituality. I rejoiced in the fact that each one of my boys would experience the joy of having the same teachers. However, the reality of this hit me this week. Gavin will never attend St. Louis along with his brothers. Gavin will never get to experience the teaching style of each unique teacher that his older brothers had. Gavin will always go to a different school as them. My anxiety began to grow as the week went on. Thinking about all the obstacles my boy will face. Thinking of all the obstacles our household faces. Thinking about how an "autism meltdown" takes top priority over everything that may be going on at the moment. Wednesday morning I asked Phil to drop William and Landon off at school on their first day. I didn't have the strength or courage. I felt defeated. Honestly, I just couldn't surround myself with happy parents. Parents who don't face the same challenges as me. Parents who don't have to travel along an autistic road. I was glad when Wednesday morning came and went. It's just another day that reminds me that we are beginning a new school year, and my son is still autistic.
After school each day last week, Gavin had several meltdowns. Lynne reminded me that he was holding it together all day at school, and releasing everything when he got home. I was happy to see Thursday come. Happy to get back into a consistent routine. We all got into the car Thursday morning. As we were waiting in the drop off line at William and Landon's school, Gavin kept repeating, "Go to William and Landon's school, go to William and Landon's school." I had to remind him that he goes to 'Gavin's school'. As soon as William and Landon left I just couldn't fight the tears any longer. I cried the entire way to school. What an emotional week it was. Thank you, Lynne, for your patience, love, and understanding of my boy. Thank you for working hard to get him back on track and talking at school again. Thank you for always going the extra mile for all your students. Thank you, Janine, my coworker. For listening to me during our lunch, and watching my eyes fill up with tears. Your listening ear meant more then you will ever realize. The people I have come to value most on this autistic journey are the ones who really listen and don't judge.
By Thursday afternoon Gavin seemed to be back to his old self. While walking out of school, hand in hand with me, he decided to imitate his principal, Mr. Stahl's laugh. Mr. Stahl was speaking to a parent. There were many parents around as well as some teachers. Mr. Stahl laughed, and Gavin loudly imitated his laugh. I think everyone stopped and stared for a few seconds. Of course as we were walking to the car I told Gavin that he can't be imitating Mr. Stahl's laugh, especially in front of parents! Yesterday we were driving by a bar called the Boat House. Gavin was able to read the sign. He said, "Gavin go to Boat House." I immediately started laughing. I thought the rest of the way home of the Rolling Stones song, You Can't Always Get What You Want. You can't always get what you want, but if you try sometime you'll find, you get what you need. I may not have gotten what I wanted. Instead, I got what I NEEDED. I NEEDED autism.
Enjoying what I needed,
Paula
I noticed that while preparing for his first week of school the anxiety began building. Anxiety over another transition, anxiety over another change in routine. I felt I was doing good by marking it on the calendar and reminding him, and having a back to school countdown. I tried really hard to stay one step ahead of Gavin. I attempted to read his moods, his frustration, his anxiety. His shift in behavior this time came in the form of oral motor. I noticed this shift in wanting sensory oral input during summer school. Gavin began grinding his teeth. The grinding was very loud and distracting. Gavin used to grind his teeth a lot after his initial autism diagnosis. During ABA therapy sessions we would attempt to get him to imitate our vocal sounds to distract him from the teeth grinding. During summer school his teacher, Lynne, used visual pictures that would represent "quiet teeth". The teeth grinding seemed to fade during the summer, however, as summer progressed and we got closer to going back to school then he needed constant oral motor input. Gavin would constantly be looking for food (mostly crunchy). He would stuff the food into his mouth to the point where he would have to spit it out or choke. Sometimes he would vomit from all the stuffing of food. If he wasn't stuffing food into his mouth, then he was attempting to find input other ways, like clicking his tongue, swishing his spit back and forth, doing raspberries on some one's arm, biting furniture, biting himself, and biting me. This need for oral motor input got progressively worse as the summer went on and finally peaked this week (his first week back to school). I noticed the week before school started that even though he was needing continuous oral input, he was also talking. He was using a lot of words. That stopped this week. The first two days of school, Gavin didn't talk. He spent his days being echolalic (repeating back everything that was said to him). It broke my heart and made my anxiety build. I thought, is this it? Will he continue to regress? Will my once verbal child become strictly echolalic? It kept me awake for most of the week and it kept my anxiety building. Lynne and I met Thursday before school. She did a lot of questioning, I answered, she consulted with our BCBA, Christine. Christine suggested some new strategies to try in regards to the oral input and Lynne was able to pin point that Gavin was struggling because most of the kids he was in class with last year have moved on to different schools. Gavin was actually beginning to call for his friends. We think that he was having difficulty being with new kids, and was wondering where his friends were, however, he couldn't tell us this. Instead he just stopped talking.
From the moment each one of my children were born I already had a piece of their future mapped out. A consistent location on that map consisted of St. Louis Elementary School. My father graduated from this same school, and I graduated from St. Louis Academy. So, I planned and dreamed of each one of my boys attending this same school and developing their minds academically, socially, and spirituality. I rejoiced in the fact that each one of my boys would experience the joy of having the same teachers. However, the reality of this hit me this week. Gavin will never attend St. Louis along with his brothers. Gavin will never get to experience the teaching style of each unique teacher that his older brothers had. Gavin will always go to a different school as them. My anxiety began to grow as the week went on. Thinking about all the obstacles my boy will face. Thinking of all the obstacles our household faces. Thinking about how an "autism meltdown" takes top priority over everything that may be going on at the moment. Wednesday morning I asked Phil to drop William and Landon off at school on their first day. I didn't have the strength or courage. I felt defeated. Honestly, I just couldn't surround myself with happy parents. Parents who don't face the same challenges as me. Parents who don't have to travel along an autistic road. I was glad when Wednesday morning came and went. It's just another day that reminds me that we are beginning a new school year, and my son is still autistic.
After school each day last week, Gavin had several meltdowns. Lynne reminded me that he was holding it together all day at school, and releasing everything when he got home. I was happy to see Thursday come. Happy to get back into a consistent routine. We all got into the car Thursday morning. As we were waiting in the drop off line at William and Landon's school, Gavin kept repeating, "Go to William and Landon's school, go to William and Landon's school." I had to remind him that he goes to 'Gavin's school'. As soon as William and Landon left I just couldn't fight the tears any longer. I cried the entire way to school. What an emotional week it was. Thank you, Lynne, for your patience, love, and understanding of my boy. Thank you for working hard to get him back on track and talking at school again. Thank you for always going the extra mile for all your students. Thank you, Janine, my coworker. For listening to me during our lunch, and watching my eyes fill up with tears. Your listening ear meant more then you will ever realize. The people I have come to value most on this autistic journey are the ones who really listen and don't judge.
By Thursday afternoon Gavin seemed to be back to his old self. While walking out of school, hand in hand with me, he decided to imitate his principal, Mr. Stahl's laugh. Mr. Stahl was speaking to a parent. There were many parents around as well as some teachers. Mr. Stahl laughed, and Gavin loudly imitated his laugh. I think everyone stopped and stared for a few seconds. Of course as we were walking to the car I told Gavin that he can't be imitating Mr. Stahl's laugh, especially in front of parents! Yesterday we were driving by a bar called the Boat House. Gavin was able to read the sign. He said, "Gavin go to Boat House." I immediately started laughing. I thought the rest of the way home of the Rolling Stones song, You Can't Always Get What You Want. You can't always get what you want, but if you try sometime you'll find, you get what you need. I may not have gotten what I wanted. Instead, I got what I NEEDED. I NEEDED autism.
Enjoying what I needed,
Paula
Tuesday, August 14, 2012
To Tell or Not to Tell
This blog entry is dedicated to Michele. Michele's son just celebrated his second birthday and has been diagnosed with PDD. Thank you, Donna, for introducing us. Michele, thanks for the inspiration.
As I prepare for a new school year, I find myself reflecting upon the past two years since receiving the big AD (autism diagnosis). I often find myself thinking about the early days post diagnosis. The time in my life that I consider "The days of darkness". It would have been so easy during those days to continuously slip down a self pity slide. A slide that just brought you deeper and deeper into a pit. It would have been easy to float around on a cloud of denial. A cloud that was fluffy, white, and never produced rain. It would have been so easy to live in a house of grief. Where you could choose to spend most days crying. When I close my eyes and remember those days, I see the self pity slide. I see the cloud of denial. I see the house of grief. There were weeks that I floated around on that cloud of denial. Why? Maybe if I stayed on the cloud then the AD would go away. Maybe my life would be perfect being a cloud floater. The house of grief was exhausting, so most days I tried to get myself out of there. The ride down the slide was ok some days. Some days it gave me a numb feeling, some days it gave me an empty feeling. It just helped me to forget about the house and the cloud for a while. There was also a time when I took shelter in the cave of guilt. The cave was dark and dreary. It was not a fun place. Some days, I found myself hiding in the cave, using it for shelter. All of these things were part of my life during those early post diagnosis days.
The question that always came to mind during those days was, "To tell or not to tell?". This is a question I struggled to answer each and every day. Should I tell people about Gavin's autism? Should I not? It's now that I can say that each mother handle's their child's AD differently. There were days that I wanted everyone to know. There were days that I wanted no one to know. There were days where I left the house of grief, slid down the self pity slide, floated on the cloud of denial, then took shelter in the cave of guilt, all while juggling the question in my head, "To tell or not to tell?"
To the mothers who just heard, "You're child has autism.", it's your choice to tell or not to tell. Eventually, I stopped juggling the question and answered it. I chose to tell anyone I encountered. I chose to tell family, friends, and colleagues. I even chose to tell strangers. Telling people also came with a price. That price included comments. Comments that made me feel great about it. Comments that helped me embrace the diagnosis. Comments that hurt, and comments that made me feel like I was being judged.
Now a days I continue to answer the question, "To tell or not to tell?" I think this question will always travel along this journey with me. Some days I choose to tell people, some days I choose not to tell. This weekend we went to Walmart. Taking Gavin to a store has been disastrous lately. I usually come home exhausted and find ways to not bring him or just don't go. Well, I made him a social story that he could visually look at and listen to on his iPad. It basically told him where we were going, my expectations of him, what we were going to buy, and what his reward would be. As I was checking out, he was helping me place all the items near the cash register. I looked at him and tears began rolling down my cheeks. The cashier asked me if I was ok. Should I tell? Should I not tell? I chose not to tell. My boy was successful in that moment. I told her I was great and left it at that.
This is a question that I will have to continue to answer along my autistic journey. How I choose to answer the question is my choice. One question that I will not have to answer is, "Will you spread awareness?" It is now my mission to spread awareness. Awareness that autism can enter any family. Awareness of what it may be like coping, living, and functioning as a family with autism.
As I prepare to enter a new school year, I see a roller coaster. A roller coaster that I am getting on. A roller coaster that consists of high points and low points. The ride is scary some days. The ride is fun some days. Most days it is unknown when the next hill or drop will come It will have its ups and downs. It will consist of flips and turns. In the distance I see the self pity slide, the house of grief, the cloud of denial, and the cave of guilt. I wave to them in the distance. They call my name. I yell from the distance, "Hello, old friends. I am taking a ride. It was good to see you!" I turn and step onto the roller coaster, look back for a second, wave goodbye, and smile.
Riding the coster,
Paula
As I prepare for a new school year, I find myself reflecting upon the past two years since receiving the big AD (autism diagnosis). I often find myself thinking about the early days post diagnosis. The time in my life that I consider "The days of darkness". It would have been so easy during those days to continuously slip down a self pity slide. A slide that just brought you deeper and deeper into a pit. It would have been easy to float around on a cloud of denial. A cloud that was fluffy, white, and never produced rain. It would have been so easy to live in a house of grief. Where you could choose to spend most days crying. When I close my eyes and remember those days, I see the self pity slide. I see the cloud of denial. I see the house of grief. There were weeks that I floated around on that cloud of denial. Why? Maybe if I stayed on the cloud then the AD would go away. Maybe my life would be perfect being a cloud floater. The house of grief was exhausting, so most days I tried to get myself out of there. The ride down the slide was ok some days. Some days it gave me a numb feeling, some days it gave me an empty feeling. It just helped me to forget about the house and the cloud for a while. There was also a time when I took shelter in the cave of guilt. The cave was dark and dreary. It was not a fun place. Some days, I found myself hiding in the cave, using it for shelter. All of these things were part of my life during those early post diagnosis days.
The question that always came to mind during those days was, "To tell or not to tell?". This is a question I struggled to answer each and every day. Should I tell people about Gavin's autism? Should I not? It's now that I can say that each mother handle's their child's AD differently. There were days that I wanted everyone to know. There were days that I wanted no one to know. There were days where I left the house of grief, slid down the self pity slide, floated on the cloud of denial, then took shelter in the cave of guilt, all while juggling the question in my head, "To tell or not to tell?"
To the mothers who just heard, "You're child has autism.", it's your choice to tell or not to tell. Eventually, I stopped juggling the question and answered it. I chose to tell anyone I encountered. I chose to tell family, friends, and colleagues. I even chose to tell strangers. Telling people also came with a price. That price included comments. Comments that made me feel great about it. Comments that helped me embrace the diagnosis. Comments that hurt, and comments that made me feel like I was being judged.
Now a days I continue to answer the question, "To tell or not to tell?" I think this question will always travel along this journey with me. Some days I choose to tell people, some days I choose not to tell. This weekend we went to Walmart. Taking Gavin to a store has been disastrous lately. I usually come home exhausted and find ways to not bring him or just don't go. Well, I made him a social story that he could visually look at and listen to on his iPad. It basically told him where we were going, my expectations of him, what we were going to buy, and what his reward would be. As I was checking out, he was helping me place all the items near the cash register. I looked at him and tears began rolling down my cheeks. The cashier asked me if I was ok. Should I tell? Should I not tell? I chose not to tell. My boy was successful in that moment. I told her I was great and left it at that.
This is a question that I will have to continue to answer along my autistic journey. How I choose to answer the question is my choice. One question that I will not have to answer is, "Will you spread awareness?" It is now my mission to spread awareness. Awareness that autism can enter any family. Awareness of what it may be like coping, living, and functioning as a family with autism.
As I prepare to enter a new school year, I see a roller coaster. A roller coaster that I am getting on. A roller coaster that consists of high points and low points. The ride is scary some days. The ride is fun some days. Most days it is unknown when the next hill or drop will come It will have its ups and downs. It will consist of flips and turns. In the distance I see the self pity slide, the house of grief, the cloud of denial, and the cave of guilt. I wave to them in the distance. They call my name. I yell from the distance, "Hello, old friends. I am taking a ride. It was good to see you!" I turn and step onto the roller coaster, look back for a second, wave goodbye, and smile.
Riding the coster,
Paula
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