Good Morning Autism,
Today makes two years since you knocked on our door. I knew of you, but didn't know you personally. Never in a million years would I have thought that my family would get to know you closely. You knew that we would have a close, personal relationship before I did. When you entered my life, I stood at a distance and wished you away! You attempted to embrace me. I cried, and cursed you. I stood fearful and longing for you to leave all while you screamed for my attention. I did not believe in you, I did not like you, I wish you never existed. I cried myself to sleep each night, asking why, asking how, asking what do I do?! You continued to attempt to embrace me.
Each morning was a new attempt to like you. Each morning brought a single step. Each single step was a step taken on an autistic road, traveling an autistic journey. Some mornings I did not want to take a step on this autistic road. I wanted to step backwards instead of forward. Some mornings I argued with you in my dreams. In my dreams, I told you that I was the boss and not you! In my dreams, we defeated you. Most mornings I took a step further. Some steps were baby steps, and some were giant steps.
Autism, today is our two year anniversary. Two years that I have traveled your road. Two whole years since you knocked on our door, and attempted to embrace me. Two years since you attempted to hold my hand and encourage me to take my first step. Autism, this is what I first saw on your road when I took those first few baby steps. I saw uncertainty. Uncertainty as to what the future holds. I saw questions and doubts. I saw hesitation and tears. I saw exhaustion and jealously. I saw anger and denial. I saw darkness.
Autism, thank you. Thank you for being persistent with your embraces. Thank you for your encouragement to take those first steps. Each morning was another step on your road. Each morning's step brought a new sunrise. Each sunrise brought color. Color that opened my eyes to your beautiful and mysterious world. Your color of darkness began to change. I have traveled on your road for two years. The road continues to seem long and uncertain. It does contain potholes, bumps, and long hills to climb. However, it is now a road of acceptance. It is bright and beautiful. I now take more giant steps each morning rather than baby steps. My family has met some loving, patient, kind, helpful people along your road. Your road is filled with hope. There is determination. There will always be questions along your road, some may never have an answer while others will.
Thank you, Autism. Thank you for helping my two oldest sons, William and Landon, become better individuals. Thank you for teaching my family patience, kindness, and unconditional love. Thank you for letting us know that it is ok to be different. Autism, thank you for helping me to spread awareness and understanding. Thank you, Autism! Thank you for giving me Gavin. Our beautiful, Gavin. Our Gavin, who woke this morning at 2 am singing Five Little Monkeys Jumping on the Bed. Our Gavin, who loves us unconditionally. Our Gavin, who learns differently. Our Gavin, who's smile lights up a room. Some day we will find his key, until then we will love him, protect him, and give him the happiness that he brings to us.
Good morning Autism, and happy anniversary.
Sincerely,
Paula
Mother on an autistic road
Monday, June 18, 2012
Saturday, June 2, 2012
An Autistic Obstacle Course
It has been about six weeks since my last update, and I feel like a lot has happened. I could say that is life in an autistic world, however, honestly I think it is just life in general. A lot can happen in one week, especially in an autistic week. We have had several behavior hurdles during the past six weeks. Most days I felt like I was having to navigate through an obstacle course that consisted of walls to climb, races to run, hurdles to jump, and water to tread. My autistic obstacle course also consisted of pit stops and lifelines. The pit stops and lifelines were where friends, family, and his teacher, Lynne, waited to help me regroup. I am very grateful for those pit stops. I will be honest, most pit stops consisted of a few adult beverages.
Last month the fourth graders at school put on a wonderful musical show. Gavin's class attended the show. Gavin was able to sit quietly and appeared to enjoy watching. The show was on a Friday. The following Monday we began to see a shift in his behavior at school. He was very anxious. He would pace and repeatedly say "no show, no show, show all done, show all done." He was very quiet and as his mom, I could see anxiety in his eyes. One thing the autistic world has taught me is how to look into my boys' eyes and know exactly how he is feeling. I am learning through his eyes. The anxiety is heartbreaking to see. With the anxiety comes fear. Fear because his brain is attempting to process something that just doesn't make sense to him. Each morning while walking Gavin to class, I could see the anxiety building in his eyes. Once he got into class he would pace back and forth. The biggest obstacle was the cafeteria. He would have meltdowns in the cafe. I witnessed part of it one morning, returned to my classroom, and the tears started rolling. I am so very grateful that I work with incredible staff. They are understanding and respect my feelings. So, thanks, Ed, for giving me a few minutes to regroup and catch my breath. Now came the difficult task of trying to figure out WHY? Why was he having meltdowns when going to the cafeteria? What was making him so anxious? I know I have said it before, and I am going to say it again. We have been blessed with the best teacher for Gavin. Lynne was determined to put the puzzle pieces together and solve the mystery. She was able to determine that he didn't like the clapping at the show, and that attending the show was a change for him as far as his schedule goes. He was coming to school full of anxiety about changes We are beginning to notice that as Gavin grows older he is becoming more and more routine. He likes things a certain way, and struggles with change. We need to prepare him if and when there is going to be a change of some sort. He was beginning to have little meltdowns if his shoelaces weren't tied a certain way, if his mat at nap time wasn't in a certain spot, or in a certain way. As far as clapping goes, Gavin doesn't like it. I think it is because he doesn't understand what the function of it is. So, Lynne, made Gavin a social story about clapping. Social stories are short stories written to an autistic individual to help them understand and behave appropriately in social situations. The stories describe a situation in terms of relevant social cues, the perspective of others, and often suggest an appropriate response. Gavin is able to read, so his social stories consist of words and pictures. We are finding that Gavin is responding well to visual social stories. Lynne is helping me create a binder of different social stories made especially for him. So far our binder consists of, "Time for Breakfast - No Show Today", "Loud Noises are OK", "Sometimes My Schedule Changes, Change is Good.", and "Going Outside". We also have a folder of social stories that we keep in the car. This folder has social stories about wearing his seat belt and staying in the back seat. Gavin was unbuckling his seat belt while I was driving. He would also attempt to climb into the passenger's front seat. I would hand him the folder each time he got into the car. Gavin and I would read the stories together. After a week, he was able to stay in his seat and keep his seat belt buckled. We were driving home from school one afternoon last week, and he started yelling, "seat belt, seat belt". I must have forgotten to buckle him. He continued to yell at me. I finally was able to pull over and buckle his seat belt. I praised him for remembering and doing a great job reminding Mama.
Last week I took all my boys to our town parade. Gavin went to a parade last year. So, I put a picture of a parade on his schedule. Once the parade started I could see through his eyes. The fear, the anxiety. His brain was struggling as to why people were walking in the road, what was the purpose of this marching band making all this noise, why were people clapping. His fear and anxiety broke my heart. I continuously reassured him that it was ok. I kept reminding him about how much fun he was having. He kept saying, "No parade, marching band all done!" When the parade ended I witnessed parents asking their children how they liked it. My heart ached. Ached for not being able to have that conservation with my third son. Instead, I spent the entire time reassuring him that he was ok. I spent the time attempting to alleviate his fear and anxiety. I spent the time attempting to slip into an autistic brain to help my son navigate a change. I spent the time trying to help my son make sense of a parade. Watching and enjoying a parade is a simple task, however, not for an autistic child. Not for my autistic son.
We had field day at school yesterday. Another change for Gavin. Lynne created a social story. We put one in his home binder, and kept one at school. Each night we would read the social story together. Gavin would say, "No, no!". The night before field day he sat and read the story quietly. The morning of field day and before school started, I took him outside and walked him around so that he could see the different activities. Overall, it was a successful day! He enjoyed the activities and even had a spider painted on his face. A lot of work went into preparing him for a simple fun filled event. But in an autistic mind, something so simple can be mind boggling! Last night was a difficult night. He spent the majority of the night screaming and having meltdowns. My friend, Christine, reminded me that he was decompressing from his day. He managed field day successfully. Held it together all day, which was a lot of work for him. Thanks, Christine, for the reminder and advice. Christine and Lynne have been my autistic lifelines.
Lately, Gavin has been doing a lot of scripting. He scripts commercials. He scripts events that have happened during the day. I often find myself watching, listening, and taking it all in. I find myself attempting to slip into his autistic world, and see the world through his eyes. Gavin has also been looking for some sort of input. Our pool is open, and he will spend hours swimming. Swimming is very therapeutic for him. We also have a large outside trampoline that he loves to use. I have noticed after jumping and swimming he will come into the house and open cabinet doors and drawers. Gavin will repeatedly slam the doors and drawers open and close, open and close. My guess is that he may need deep pressure input. We call them squeezes. When I find him doing this to the cabinet drawers and doors, then I will ask him if he wants squeezes. His reply is often, "Squeeze please!". The deep pressure seems to help ground him.
I had the opportunity last week to watch William play basketball. I immediately noticed a mother and father with their autistic son. He looked about 8-9 years old. Their older son was on the opposing team. The autistic boy did a great job watching his brother play basketball. My heart danced. It danced with hope. Hope that maybe one day Gavin will be able to watch his brothers play sports. I often don't attend my other boys' sporting events. I am usually home with Gavin. While watching the game I kept thinking how Gavin would be stimming from the noise that the basketball made. I wanted to ask this mother how she did it. How did she prepare her autistic son to attend his brother's basketball game? I had a mountain of questions for her. I wanted to stand next to her and ask away. However, I stopped myself. I reminded myself that not all people are "open" on this autistic journey. She might have looked at me and told me to beat it. I also reminded myself that I was there to watch William. It was William's night. He was so excited to have me watching him. I needed to be there 100%. I needed to come out of my autistic world and step into the ordinary world. Both William and Landon are scheduled to play summer basketball. So, my goal is to get Gavin to their games successfully. I may need a few adult beverages when I get home.
I recently was in Walmart with Gavin. Gavin looked at a woman and said, "Hi, how are you?". The woman said she was good and attempted to engage in conversation with him. She kept asking him questions. He looked all around and didn't answer. His autistic mind couldn't make sense of it. I then looked at the woman and told her that Gavin had autism. Her response was, "I would have never known." She then proceeded to continue to strike up conversation with him. I thought of this woman all night. I thought about what she did for me. She continued to talk to my boy. She continued to not treat him differently. She was not rattled when I told her that he was autistic. She was sweet, kind, and her heart was full of love. I gave her awareness and she gave my kindness and hope in return.
June is Gavin's birthday month. He will be turning 4 on June 29th. June is also our autism anniversary. This month will make two years that we have been on this journey. Two years since we entered an autistic world. As I type, I think of what Gavin would be doing as a typical soon to be 4 year old. He would be planning his birthday party theme and telling me who to invite. He would be having play dates. He would be telling me who his best friend was. He would pick out what clothes he would want to wear. He would accept change. He would love seeing parades. He would engage in conversations. He would attend his brother's basketball game. Gavin was brought into my life for a reason. With him brought autism. Gavin has autism, but autism doesn't have him. He will always be my Gavin. He brings unconditional love to my world. He brings acceptance and understanding. He brings laughter and hope. He brings kindness and awareness. I will continue to navigate through this autistic obstacle course. I will continue to spread awareness. I will continue to have hope. Lastly, I will continue to appreciate those pit stops and lifelines.
Thanks for checking in and traveling along with us on this autistic journey. Together we can spread awareness and make a difference.
With love and hope,
Paula
Last month the fourth graders at school put on a wonderful musical show. Gavin's class attended the show. Gavin was able to sit quietly and appeared to enjoy watching. The show was on a Friday. The following Monday we began to see a shift in his behavior at school. He was very anxious. He would pace and repeatedly say "no show, no show, show all done, show all done." He was very quiet and as his mom, I could see anxiety in his eyes. One thing the autistic world has taught me is how to look into my boys' eyes and know exactly how he is feeling. I am learning through his eyes. The anxiety is heartbreaking to see. With the anxiety comes fear. Fear because his brain is attempting to process something that just doesn't make sense to him. Each morning while walking Gavin to class, I could see the anxiety building in his eyes. Once he got into class he would pace back and forth. The biggest obstacle was the cafeteria. He would have meltdowns in the cafe. I witnessed part of it one morning, returned to my classroom, and the tears started rolling. I am so very grateful that I work with incredible staff. They are understanding and respect my feelings. So, thanks, Ed, for giving me a few minutes to regroup and catch my breath. Now came the difficult task of trying to figure out WHY? Why was he having meltdowns when going to the cafeteria? What was making him so anxious? I know I have said it before, and I am going to say it again. We have been blessed with the best teacher for Gavin. Lynne was determined to put the puzzle pieces together and solve the mystery. She was able to determine that he didn't like the clapping at the show, and that attending the show was a change for him as far as his schedule goes. He was coming to school full of anxiety about changes We are beginning to notice that as Gavin grows older he is becoming more and more routine. He likes things a certain way, and struggles with change. We need to prepare him if and when there is going to be a change of some sort. He was beginning to have little meltdowns if his shoelaces weren't tied a certain way, if his mat at nap time wasn't in a certain spot, or in a certain way. As far as clapping goes, Gavin doesn't like it. I think it is because he doesn't understand what the function of it is. So, Lynne, made Gavin a social story about clapping. Social stories are short stories written to an autistic individual to help them understand and behave appropriately in social situations. The stories describe a situation in terms of relevant social cues, the perspective of others, and often suggest an appropriate response. Gavin is able to read, so his social stories consist of words and pictures. We are finding that Gavin is responding well to visual social stories. Lynne is helping me create a binder of different social stories made especially for him. So far our binder consists of, "Time for Breakfast - No Show Today", "Loud Noises are OK", "Sometimes My Schedule Changes, Change is Good.", and "Going Outside". We also have a folder of social stories that we keep in the car. This folder has social stories about wearing his seat belt and staying in the back seat. Gavin was unbuckling his seat belt while I was driving. He would also attempt to climb into the passenger's front seat. I would hand him the folder each time he got into the car. Gavin and I would read the stories together. After a week, he was able to stay in his seat and keep his seat belt buckled. We were driving home from school one afternoon last week, and he started yelling, "seat belt, seat belt". I must have forgotten to buckle him. He continued to yell at me. I finally was able to pull over and buckle his seat belt. I praised him for remembering and doing a great job reminding Mama.
Last week I took all my boys to our town parade. Gavin went to a parade last year. So, I put a picture of a parade on his schedule. Once the parade started I could see through his eyes. The fear, the anxiety. His brain was struggling as to why people were walking in the road, what was the purpose of this marching band making all this noise, why were people clapping. His fear and anxiety broke my heart. I continuously reassured him that it was ok. I kept reminding him about how much fun he was having. He kept saying, "No parade, marching band all done!" When the parade ended I witnessed parents asking their children how they liked it. My heart ached. Ached for not being able to have that conservation with my third son. Instead, I spent the entire time reassuring him that he was ok. I spent the time attempting to alleviate his fear and anxiety. I spent the time attempting to slip into an autistic brain to help my son navigate a change. I spent the time trying to help my son make sense of a parade. Watching and enjoying a parade is a simple task, however, not for an autistic child. Not for my autistic son.
We had field day at school yesterday. Another change for Gavin. Lynne created a social story. We put one in his home binder, and kept one at school. Each night we would read the social story together. Gavin would say, "No, no!". The night before field day he sat and read the story quietly. The morning of field day and before school started, I took him outside and walked him around so that he could see the different activities. Overall, it was a successful day! He enjoyed the activities and even had a spider painted on his face. A lot of work went into preparing him for a simple fun filled event. But in an autistic mind, something so simple can be mind boggling! Last night was a difficult night. He spent the majority of the night screaming and having meltdowns. My friend, Christine, reminded me that he was decompressing from his day. He managed field day successfully. Held it together all day, which was a lot of work for him. Thanks, Christine, for the reminder and advice. Christine and Lynne have been my autistic lifelines.
Lately, Gavin has been doing a lot of scripting. He scripts commercials. He scripts events that have happened during the day. I often find myself watching, listening, and taking it all in. I find myself attempting to slip into his autistic world, and see the world through his eyes. Gavin has also been looking for some sort of input. Our pool is open, and he will spend hours swimming. Swimming is very therapeutic for him. We also have a large outside trampoline that he loves to use. I have noticed after jumping and swimming he will come into the house and open cabinet doors and drawers. Gavin will repeatedly slam the doors and drawers open and close, open and close. My guess is that he may need deep pressure input. We call them squeezes. When I find him doing this to the cabinet drawers and doors, then I will ask him if he wants squeezes. His reply is often, "Squeeze please!". The deep pressure seems to help ground him.
I had the opportunity last week to watch William play basketball. I immediately noticed a mother and father with their autistic son. He looked about 8-9 years old. Their older son was on the opposing team. The autistic boy did a great job watching his brother play basketball. My heart danced. It danced with hope. Hope that maybe one day Gavin will be able to watch his brothers play sports. I often don't attend my other boys' sporting events. I am usually home with Gavin. While watching the game I kept thinking how Gavin would be stimming from the noise that the basketball made. I wanted to ask this mother how she did it. How did she prepare her autistic son to attend his brother's basketball game? I had a mountain of questions for her. I wanted to stand next to her and ask away. However, I stopped myself. I reminded myself that not all people are "open" on this autistic journey. She might have looked at me and told me to beat it. I also reminded myself that I was there to watch William. It was William's night. He was so excited to have me watching him. I needed to be there 100%. I needed to come out of my autistic world and step into the ordinary world. Both William and Landon are scheduled to play summer basketball. So, my goal is to get Gavin to their games successfully. I may need a few adult beverages when I get home.
I recently was in Walmart with Gavin. Gavin looked at a woman and said, "Hi, how are you?". The woman said she was good and attempted to engage in conversation with him. She kept asking him questions. He looked all around and didn't answer. His autistic mind couldn't make sense of it. I then looked at the woman and told her that Gavin had autism. Her response was, "I would have never known." She then proceeded to continue to strike up conversation with him. I thought of this woman all night. I thought about what she did for me. She continued to talk to my boy. She continued to not treat him differently. She was not rattled when I told her that he was autistic. She was sweet, kind, and her heart was full of love. I gave her awareness and she gave my kindness and hope in return.
June is Gavin's birthday month. He will be turning 4 on June 29th. June is also our autism anniversary. This month will make two years that we have been on this journey. Two years since we entered an autistic world. As I type, I think of what Gavin would be doing as a typical soon to be 4 year old. He would be planning his birthday party theme and telling me who to invite. He would be having play dates. He would be telling me who his best friend was. He would pick out what clothes he would want to wear. He would accept change. He would love seeing parades. He would engage in conversations. He would attend his brother's basketball game. Gavin was brought into my life for a reason. With him brought autism. Gavin has autism, but autism doesn't have him. He will always be my Gavin. He brings unconditional love to my world. He brings acceptance and understanding. He brings laughter and hope. He brings kindness and awareness. I will continue to navigate through this autistic obstacle course. I will continue to spread awareness. I will continue to have hope. Lastly, I will continue to appreciate those pit stops and lifelines.
Thanks for checking in and traveling along with us on this autistic journey. Together we can spread awareness and make a difference.
With love and hope,
Paula
Sunday, April 22, 2012
Roadblock
Overall, it has been a great month. However, today I hit a roadblock on this autism journey. I figured if maybe I channel my energy into writing, then I may be able to slowly move up and over the roadblock.
So, here I go......FUAutism! FU for everything you are and everything you stand for. I despise you today. I despise the communication challenges that you give my son. I despise the social/emotional challenges you give my son. I despise your misunderstanding of language. I despise your flapping, your scripting, your repetitive behaviors, your jumping, and your constant demand from sensory input. FU Autism!
I didn't tag a family member today to watch Gavin. I attempted to strip the boys' beds and remake them. I figured I could watch Gavin, give everyone a break, and accomplish something. In the process, Gavin climbed up onto the window sill and fell. His screaming and pain were unbearable. I despise that he couldn't tell me what hurt. I despise that he was shaking and screaming uncontrollably. I despise that everyone in the family started yelling at each other and blaming each other for not watching Gavin. FU Autism!
I despise the fact that I awoke with another panic attack last night. I despise that I cried myself to sleep thinking of my Gavin never being invited to a friend's birthday party. I despise the constant visuals and the structured routine. I despise always having to give my son a warning for a transition to avoid a long and unbearable meltdown. FU Autism!
At mass today, I looked over at my oldest son, William, and wondered when was the last time I had some one on one quality time with him. I despise that you consume so much of my time. I despise that your needs have to be met first before all others. FU Autism!
I despise that I have to over plan all family functions. Landon's First Communion is approaching, I despise that any change in routine is so incredibly difficult for you. That instead of enjoying and being able to relax on Landon's special day, I will be wondering if your needs are being met. If you can handle the change in routine. I despise how difficult school vacations can be. I despise your constant need for routine. I despise strangers staring. FU Autism!
Driving to Walmart today, Landon's booster seat was moved. I despise the fact that Gavin screamed the entire drive to Walmart because he couldn't make sense of this. I despise that I had to continuously reinforce him that it was going to be ok. I despise that the first thing Gavin did when we got to Walmart was move the booster seat to where it had to be for him to make sense of it. FU Autsim!
I despise at how tired you make me. I despise the fact that I can't remember the last time I slept through the night. I despise the fact that you never rest. FU Autism!
I despise that I still grieve. I despise that sometimes I lay awake at night and wonder. Wonder what the future with autism holds. Wonder if Gavin will hit a plateau and stop making progress. I despise the doubts you give me. The continuous questioning if I am doing the right thing. FU Autism!
I am far from being a hero, I am far from being inspirational. I am a mother who is trying to unlock her baby's mind! I despise not having that key. FU Autism!
I despise roadblocks and behavior hurdles. I despise that I just want to lock myself in the bathroom and cry until no tears are left. I despise that William and Landon sometimes see my grief through tears. FU Autism!
That damn Brick hit me today. It caused a Roadblock. I am sure once I finish typing this I will have myself a long overdue cry and not look back. I will slowly rise, lift my head high, pick up my cross, and crawl over the Roadblock hand in hand with Autism.
Still searching for that key,
Paula
So, here I go......FUAutism! FU for everything you are and everything you stand for. I despise you today. I despise the communication challenges that you give my son. I despise the social/emotional challenges you give my son. I despise your misunderstanding of language. I despise your flapping, your scripting, your repetitive behaviors, your jumping, and your constant demand from sensory input. FU Autism!
I didn't tag a family member today to watch Gavin. I attempted to strip the boys' beds and remake them. I figured I could watch Gavin, give everyone a break, and accomplish something. In the process, Gavin climbed up onto the window sill and fell. His screaming and pain were unbearable. I despise that he couldn't tell me what hurt. I despise that he was shaking and screaming uncontrollably. I despise that everyone in the family started yelling at each other and blaming each other for not watching Gavin. FU Autism!
I despise the fact that I awoke with another panic attack last night. I despise that I cried myself to sleep thinking of my Gavin never being invited to a friend's birthday party. I despise the constant visuals and the structured routine. I despise always having to give my son a warning for a transition to avoid a long and unbearable meltdown. FU Autism!
At mass today, I looked over at my oldest son, William, and wondered when was the last time I had some one on one quality time with him. I despise that you consume so much of my time. I despise that your needs have to be met first before all others. FU Autism!
I despise that I have to over plan all family functions. Landon's First Communion is approaching, I despise that any change in routine is so incredibly difficult for you. That instead of enjoying and being able to relax on Landon's special day, I will be wondering if your needs are being met. If you can handle the change in routine. I despise how difficult school vacations can be. I despise your constant need for routine. I despise strangers staring. FU Autism!
Driving to Walmart today, Landon's booster seat was moved. I despise the fact that Gavin screamed the entire drive to Walmart because he couldn't make sense of this. I despise that I had to continuously reinforce him that it was going to be ok. I despise that the first thing Gavin did when we got to Walmart was move the booster seat to where it had to be for him to make sense of it. FU Autsim!
I despise at how tired you make me. I despise the fact that I can't remember the last time I slept through the night. I despise the fact that you never rest. FU Autism!
I despise that I still grieve. I despise that sometimes I lay awake at night and wonder. Wonder what the future with autism holds. Wonder if Gavin will hit a plateau and stop making progress. I despise the doubts you give me. The continuous questioning if I am doing the right thing. FU Autism!
I am far from being a hero, I am far from being inspirational. I am a mother who is trying to unlock her baby's mind! I despise not having that key. FU Autism!
I despise roadblocks and behavior hurdles. I despise that I just want to lock myself in the bathroom and cry until no tears are left. I despise that William and Landon sometimes see my grief through tears. FU Autism!
That damn Brick hit me today. It caused a Roadblock. I am sure once I finish typing this I will have myself a long overdue cry and not look back. I will slowly rise, lift my head high, pick up my cross, and crawl over the Roadblock hand in hand with Autism.
Still searching for that key,
Paula
Friday, April 20, 2012
CROSSING REALITY
There is so much to update about that I have a feeling that this may be a very long blog. First, we had our very first fundraiser as a foundation. Our first 5K was held this past weekend at the Lowell Elks. I have one word to describe it.......WOW! So many people came out to support us by running, walking, donating raffle items, donating water and bananas, making generous donations, purchasing raffle tickets, and volunteering their time. It was a successful and memorable first event. We will be posting on the foundation's website how the funds will be allocated. One thing I encountered while beginning this foundation is generosity. The generosity of people has been overwhelming. Phil and I have been in awe of how kind and generous people have been. It is making us strive to be better people. The week prior to the 5K, the school that Gavin attends and I teach at, held its first annual Autism Awareness Week. I have one word to describe this week leading up to the 5K......AMAZING! This was able to happen due to the support of the Principal, Matt Stahl, Assistant Principal, Kim Clements, the teachers, and our BCBA, Christine. I sat down with the two PDD teachers, Melissa and Lynne, and planned and organized various activities that the teachers could complete with their students. The activities helped to spread awareness by giving the students a glimpse into an autistic child's mind. Some of the activities included having the students wear safety goggles covered in Vaseline and being asked to write their name or a sentence. Participating in a read aloud which incorporated children's story books about autism, stringing beads while wearing gardening gloves, and participating in relay races while wearing binoculars backwards. The final day consisted of all staff and students wearing blue. Many teachers had autism shirts on that read "Autism, Support, Educate, Advocate" Thank you to the assistant principal, Kim, and several teachers for creating the shirts. We also had an all school assembly where the entire school watched a kid friendly video of my oldest son, William, talking about what he knows about autism. We then had a question and answer session. The students had some great questions. William and Landon stood in front of the entire school and helped me answer the questions. What an amazing thing that the Pawtucketville Memorial Elementary School did! Thank you to all the staff and students!! This autism journey is becoming more bearable by having such supportive people behind us to encourage us, motivate us, and lift us up when we are feeling down. Thank you also to Kathy Marandola. Kathy is a colleague of mine who was also the 5K race director. Our first annual 5K was flawless! She made sure that every detail was covered. A lot of work went into planning this event, and I will be forever grateful to Kathy for volunteering her time and talents. We did have one glitch. My dog got sprayed by a skunk the Wednesday morning before the race. It wouldn't have been a big deal, however, we had just picked up 240 race shirts. The race shirts were boxed in the living room. My dog took a full face spray. Ran into the house soaking wet and reeking of skunk. She proceeded to run through the entire house. Phil and I attempted to get the 5K shirts out as soon as possible. However, once I delivered them to school, Kathy opened the boxes and found a very strong skunk odor. Thank goodness we were able to air the shirts out. Thank you to the Pawtucketville staff who willingly took the more smelly shirts for their own. Again, grateful for their flexibility and understanding.
We are currently facing a new behavior hurdle at home with Gavin. He likes to script that he is leaving. He will take a chair and slide it up to where the keys are hanging. Gavin will then climb up onto the chair and take a set of keys. His next step will be to put on a pair of shoes (usually Landon's crocks), and then unlock the door and proceed to walk out. He has gone so far as to walk down the front stairs and the walkway to the driveway. We have to try to redirect Gavin so as to not call any attention to his behavior. The more attention he gets for negative behavior, the more he does it. Due to this new behavior hurdle we also have to make sure he is supervised 24:7. So, we have made a game into it. A good old game of tag. We work as a team. Whom ever gets tagged, it is their shift to watch Gavin. William and Landon are really good about taking their watch shift carefully. This really helps if I have cleaning to do, beds to strip and make, or just to even take a shower. Another important thing I have learned on this journey is how very important team work is. Phil and I couldn't do it alone. We appreciate all the support, and help we get. Gavin is also having some major meltdowns at home. He becomes easily frustrated, and is not able to communicate his frustration. I have been showing him pictures of feeling cards. I often take out the mad one and reinforce him to say, "I am mad!" I noticed he has also started banging his head and biting things out of frustration. More new behavior hurdles. I am guessing that he has been out of school for the week, and this does throw him off. The important thing is reminding his siblings to ignore, ignore, ignore. Which is difficult to do sometimes.
I was reflecting this week how I remember when each of my boys went through the "toddler stage" where they were into everything. How we had to toddler proof the house and watch them 24:7 for fear of them getting hurt. I was thinking about how exhausted I was during that toddler stage, and was a little more relaxed when they outgrew it. Don't get me wrong, I do miss their different toddler stages. However, I was thinking this week that Gavin may never outgrow his toddler stage. Instead of it being called a toddler stage it is now called Autism. I have come to the realization that he may need to be supervised 24:7, that I will always be exhausted, and that this is my reality now.
Gavin had his six month check up with his Developmental Pediatrician, Dr. Rappaport at Children's Hospital. We haven't seen Dr. Rappaport since August. Gavin was just beginning school then. We sat in traffic for an hour and forty minutes yesterday to get there, however, Phil and I commented how it is always worth it. We adore his Developmental Pedi. He is great with Gavin. Asks us a lot of questions and is very observant of our boy. He was impressed that Gavin is already fully potty trained even at night. He inquired as to how we accomplished this. We told him that consistency between school and home were important. He didn't like being wet, so that helped also. Dr. Rappaport is recommending more ABA (Applied Behavior Analysis) therapy for home. Especially during the summer months. Phil and I both agree that this would be crucial to his development. We are also looking into getting him additional speech and language and occupational therapy during the summer months. This will help him continue to make progress. Dr. Rappaport asked us about his stereotypical behaviors. I looked at him and began to rattle them off one after another (his repetitive behaviors, scripting, flapping, stimming). During the car ride home I was thinking how far we have come. This is what I realized. I am no longer in the denial stage of my son's autism. I am now in the acceptance stage. Believe me, I still grieve, and I am still anxious about what the future holds. But I have come to accept Autism. Some days I embrace it, some days I curse it, some days I want it. I want to carry the burden for my son. I want him to have a typically developing life. What I would give or do to take the burden from him.
The night before the appt, I slept horribly. I awoke in the middle of the night with what I thought was heartburn. However, it was anxiety. The anxiety hit me out of no where and led to a panic attack. I blamed it on lack of sleep. I realized later after his appointment that is was due to his upcoming appointment. I was extremely anxious about it. However, I could not pinpoint why? Crawling into bed last night is when I realized it. I took another step closer to meeting autism face to face. I knew Dr. Rappaport was not going to tell me that my son is cured. My son will never be cured. He is autistic. He has autism. I have stepped into a world of autism reality. Where ABA, scripting, flapping, stimming, speech, OT, and PECS are all familiar words in my house, where my son will never outgrow his Autism, where my entire family is working hard as a team to unlock his mind. However, my world of autism reality also consists of generosity, kindness, understanding, encouragement, support, and acceptance. My son may have autism, but my family has been blessed. We will learn lessons about life, we will face mountains together, and we will work as a team.
Lastly, I want to once again say thank you. Thank you to everyone who came out to support the foundation. Thank you to all the runners, walkers, people who donated, people who sent us a message saying they were thinking of us. Thank you to my colleagues at the Pawtucketville Memorial Elementary School. Thank you to my colleagues at the Reilly Elementary School. You guys have given me a gift of support and encouragement. These gifts are irreplaceable. Thank you to my friends. Thank you to my family. Team work and love keep us strong. Also, thank you to Mr. Durkin. Your heartfelt letter and Sacred Heart Badge are priceless. I read your letter once a day, and carry the Badge with me always. As you said in your letter that a priest once told you that God only gives those crosses that have the backs to carry it. I am blessed that my family, friends, and colleagues give me the strength to carry the heavy load. Some days when I am feeling weak, I know I can count on one of them to carry the cross for a little while until I get my bearings.
Still searching for that key,
Paula
We are currently facing a new behavior hurdle at home with Gavin. He likes to script that he is leaving. He will take a chair and slide it up to where the keys are hanging. Gavin will then climb up onto the chair and take a set of keys. His next step will be to put on a pair of shoes (usually Landon's crocks), and then unlock the door and proceed to walk out. He has gone so far as to walk down the front stairs and the walkway to the driveway. We have to try to redirect Gavin so as to not call any attention to his behavior. The more attention he gets for negative behavior, the more he does it. Due to this new behavior hurdle we also have to make sure he is supervised 24:7. So, we have made a game into it. A good old game of tag. We work as a team. Whom ever gets tagged, it is their shift to watch Gavin. William and Landon are really good about taking their watch shift carefully. This really helps if I have cleaning to do, beds to strip and make, or just to even take a shower. Another important thing I have learned on this journey is how very important team work is. Phil and I couldn't do it alone. We appreciate all the support, and help we get. Gavin is also having some major meltdowns at home. He becomes easily frustrated, and is not able to communicate his frustration. I have been showing him pictures of feeling cards. I often take out the mad one and reinforce him to say, "I am mad!" I noticed he has also started banging his head and biting things out of frustration. More new behavior hurdles. I am guessing that he has been out of school for the week, and this does throw him off. The important thing is reminding his siblings to ignore, ignore, ignore. Which is difficult to do sometimes.
I was reflecting this week how I remember when each of my boys went through the "toddler stage" where they were into everything. How we had to toddler proof the house and watch them 24:7 for fear of them getting hurt. I was thinking about how exhausted I was during that toddler stage, and was a little more relaxed when they outgrew it. Don't get me wrong, I do miss their different toddler stages. However, I was thinking this week that Gavin may never outgrow his toddler stage. Instead of it being called a toddler stage it is now called Autism. I have come to the realization that he may need to be supervised 24:7, that I will always be exhausted, and that this is my reality now.
Gavin had his six month check up with his Developmental Pediatrician, Dr. Rappaport at Children's Hospital. We haven't seen Dr. Rappaport since August. Gavin was just beginning school then. We sat in traffic for an hour and forty minutes yesterday to get there, however, Phil and I commented how it is always worth it. We adore his Developmental Pedi. He is great with Gavin. Asks us a lot of questions and is very observant of our boy. He was impressed that Gavin is already fully potty trained even at night. He inquired as to how we accomplished this. We told him that consistency between school and home were important. He didn't like being wet, so that helped also. Dr. Rappaport is recommending more ABA (Applied Behavior Analysis) therapy for home. Especially during the summer months. Phil and I both agree that this would be crucial to his development. We are also looking into getting him additional speech and language and occupational therapy during the summer months. This will help him continue to make progress. Dr. Rappaport asked us about his stereotypical behaviors. I looked at him and began to rattle them off one after another (his repetitive behaviors, scripting, flapping, stimming). During the car ride home I was thinking how far we have come. This is what I realized. I am no longer in the denial stage of my son's autism. I am now in the acceptance stage. Believe me, I still grieve, and I am still anxious about what the future holds. But I have come to accept Autism. Some days I embrace it, some days I curse it, some days I want it. I want to carry the burden for my son. I want him to have a typically developing life. What I would give or do to take the burden from him.
The night before the appt, I slept horribly. I awoke in the middle of the night with what I thought was heartburn. However, it was anxiety. The anxiety hit me out of no where and led to a panic attack. I blamed it on lack of sleep. I realized later after his appointment that is was due to his upcoming appointment. I was extremely anxious about it. However, I could not pinpoint why? Crawling into bed last night is when I realized it. I took another step closer to meeting autism face to face. I knew Dr. Rappaport was not going to tell me that my son is cured. My son will never be cured. He is autistic. He has autism. I have stepped into a world of autism reality. Where ABA, scripting, flapping, stimming, speech, OT, and PECS are all familiar words in my house, where my son will never outgrow his Autism, where my entire family is working hard as a team to unlock his mind. However, my world of autism reality also consists of generosity, kindness, understanding, encouragement, support, and acceptance. My son may have autism, but my family has been blessed. We will learn lessons about life, we will face mountains together, and we will work as a team.
Lastly, I want to once again say thank you. Thank you to everyone who came out to support the foundation. Thank you to all the runners, walkers, people who donated, people who sent us a message saying they were thinking of us. Thank you to my colleagues at the Pawtucketville Memorial Elementary School. Thank you to my colleagues at the Reilly Elementary School. You guys have given me a gift of support and encouragement. These gifts are irreplaceable. Thank you to my friends. Thank you to my family. Team work and love keep us strong. Also, thank you to Mr. Durkin. Your heartfelt letter and Sacred Heart Badge are priceless. I read your letter once a day, and carry the Badge with me always. As you said in your letter that a priest once told you that God only gives those crosses that have the backs to carry it. I am blessed that my family, friends, and colleagues give me the strength to carry the heavy load. Some days when I am feeling weak, I know I can count on one of them to carry the cross for a little while until I get my bearings.
Still searching for that key,
Paula
Monday, April 2, 2012
A letter to Autism
Dear Autism,
Seeing this is Autism Awareness Day, a day that we shine a light on you, a day that we light you up blue, I have decided to take a moment to reflect upon you. You entered my life on June 18, 2010. My son was just about to turn two. Some days it feels like yesterday when I faced you like a deer in head lights. Other days it feels like years ago. I remember sitting in a small room, holding a thirteen page report in one hand, and Phil's hand in the other. I remember the doctors looking at us with such heartwarming smiles. I was sure that they would tell us that Gavin had a communication delay. I was sure that they would even tell me to stop treating him like the baby of the family, and he would be just fine. I was so sure of it, that when the words, "Gavin is autistic" was said, it took a moment to catch my bearings. You see, you stopped my world on June 18, 2010. The world stopped for that moment. I felt like I couldn't breathe. I began tapping my foot and held Phil's hand even harder. I looked at the doctors and asked them to repeat themselves. I asked them if they were sure. The doctors replied, "You're son is autistic." I asked them if he had PDD? Again, they replied, "Gavin has autism." I looked down at the report I was holding. I quickly scanned it. Clearly it couldn't be in writing. There it was, "Gavin is autistic." At that moment my world changed. All my hopes and dreams for my third son, my youngest, my Gavin, were shattered. The tears came, and they didn't stop. The doctor handed me a box of tissues. The tears flowed so freely that I felt my body wanting to convulse. My brain shut off. Phil did all of the questioning. I didn't hear any words after that. I just sat, wiped my tears, and attempted to stop the convulsions. The doctor finally walked us to the check out area. She asked the social worked to get us their "autism packet". I stood silently. I remember Phil did all the talking, I just stood there. The social worker handed us a large packet and told us that she would be in touch. I just stood there. I did not want to leave. I wanted to stay there forever.
I remember the car ride home was very quiet. My tears continued to flow, and my body continued to convulse. How would I tell his siblings? How would I explain autism to them? Would my son ever talk? What if I die never hearing his voice? How will I teach him? Why my son? Why me? Why us? I remember asking Phil through tears what was going to happen to our boy. How will we do this? Phil squeezed my hand tighter and told me that we will be ok. Gavin will be ok. We will do what ever it takes for all our kids. Autism will not defeat us. It will encourage us.
I called my sister on the way home. I told her the news. The tears would not stop. She asked what she could do. I asked her to please call the rest of the family. I just couldn't do it. I remember asking her to tell them to please not give advice. All we needed was love and support. Just love and support is all we need.
Upon returning home, we gathered all the kids into the boys bedroom. We sat together and held hands. The boys asked me why I had been crying. My response was, "Gavin has autism." They were full of questions but the one that I clearly remember is what William said. "Is that why Gavin doesn't talk?" My response was, "Yes, William. That is why, and our job now is to teach him how to talk. No matter what it takes, we will get him to talk." I then told the boys that God doesn't give just anyone an autistic sibling. He entrusted him to you. It is a big job, and he knew you were special enough to do it.
I grieved for months. The grief would some days hit me like a freight train. I hid my tears well, I hid my fears well, I grieved in silence. I remember the grief was so painful some days that I would have to tell myself to breathe so that I wouldn't hyperventilate. Autism, all your information was so overwhelming. I contacted my friend, Christine. She was a godsend. She informed me of what places to contact, and where to begin. Christine, you helped me take that first step to meet autism face to face. For that I will be forever grateful.
I would get up with Gavin each morning and leave our Golden Retriever, Lillie, outside. Every morning Lillie would come back in. I would tell her to, "sit" and then give her a bone. I remember one August morning. We let Lillie outside. She came in. Gavin looked at her and said, "SIT!" His first word. That was my second step to meet you face to face, Autism. August, 2010, I was given hope. Hope that I would continue to hear my boy's voice!
Next came the countless hours of ABA (Applied Behavior Analysis), speech, OT, and services from a developmental specialist. Countless hours that consisted of working, learning, and most of all teaching my boy how to talk, socialize, and play. I continued to take more and more steps to meet you face to face. Some of those meetings were painful, and some of those meetings were joyful.
December, 2010, brought a gift. I walked into a room, Gavin looked at me and said, "Mama." Another step closer to facing you. That was the moment when I knew everything was going to be ok. I got to hear my boy call my name.
As I sit here today and reflect back to June, 2010, I see a new beginning. I see hope. I see laughter. I see joy. Each new encounter with you, Autism, brings me a little more understanding. I am not afraid to continue to meet you face to face. There are still some days where you bring me sadness and grief. There are still some days where I feel like you robbed me, you robbed my family, you robbed my boy. There are still some days where I honestly think that God got the wrong address and should have sent you to someone else. However, those days are beginning to be outnumbered. They are outnumbered by the days where my son's voice makes me smile, the days where his smile lights up a room. The days where my boy sings me a song.
So today, Autism, I shine a light on you. I shine a light for all you have taught me since June, 2010. I have learned to not take things for granted. I have learned that it is the little things in life that really matter. Autism, you have taught me to never give up, that it is ok to be different, and that love and support are what matter the most. You have made my marriage stronger, you have made my kids more accepting of others. You have taught us patience. You have encouraged us to work harder and never give up. Autism, I thank you and honor you with blue.
Sincerely,
Paula
The Mother of an Autistic Son
Seeing this is Autism Awareness Day, a day that we shine a light on you, a day that we light you up blue, I have decided to take a moment to reflect upon you. You entered my life on June 18, 2010. My son was just about to turn two. Some days it feels like yesterday when I faced you like a deer in head lights. Other days it feels like years ago. I remember sitting in a small room, holding a thirteen page report in one hand, and Phil's hand in the other. I remember the doctors looking at us with such heartwarming smiles. I was sure that they would tell us that Gavin had a communication delay. I was sure that they would even tell me to stop treating him like the baby of the family, and he would be just fine. I was so sure of it, that when the words, "Gavin is autistic" was said, it took a moment to catch my bearings. You see, you stopped my world on June 18, 2010. The world stopped for that moment. I felt like I couldn't breathe. I began tapping my foot and held Phil's hand even harder. I looked at the doctors and asked them to repeat themselves. I asked them if they were sure. The doctors replied, "You're son is autistic." I asked them if he had PDD? Again, they replied, "Gavin has autism." I looked down at the report I was holding. I quickly scanned it. Clearly it couldn't be in writing. There it was, "Gavin is autistic." At that moment my world changed. All my hopes and dreams for my third son, my youngest, my Gavin, were shattered. The tears came, and they didn't stop. The doctor handed me a box of tissues. The tears flowed so freely that I felt my body wanting to convulse. My brain shut off. Phil did all of the questioning. I didn't hear any words after that. I just sat, wiped my tears, and attempted to stop the convulsions. The doctor finally walked us to the check out area. She asked the social worked to get us their "autism packet". I stood silently. I remember Phil did all the talking, I just stood there. The social worker handed us a large packet and told us that she would be in touch. I just stood there. I did not want to leave. I wanted to stay there forever.
I remember the car ride home was very quiet. My tears continued to flow, and my body continued to convulse. How would I tell his siblings? How would I explain autism to them? Would my son ever talk? What if I die never hearing his voice? How will I teach him? Why my son? Why me? Why us? I remember asking Phil through tears what was going to happen to our boy. How will we do this? Phil squeezed my hand tighter and told me that we will be ok. Gavin will be ok. We will do what ever it takes for all our kids. Autism will not defeat us. It will encourage us.
I called my sister on the way home. I told her the news. The tears would not stop. She asked what she could do. I asked her to please call the rest of the family. I just couldn't do it. I remember asking her to tell them to please not give advice. All we needed was love and support. Just love and support is all we need.
Upon returning home, we gathered all the kids into the boys bedroom. We sat together and held hands. The boys asked me why I had been crying. My response was, "Gavin has autism." They were full of questions but the one that I clearly remember is what William said. "Is that why Gavin doesn't talk?" My response was, "Yes, William. That is why, and our job now is to teach him how to talk. No matter what it takes, we will get him to talk." I then told the boys that God doesn't give just anyone an autistic sibling. He entrusted him to you. It is a big job, and he knew you were special enough to do it.
I grieved for months. The grief would some days hit me like a freight train. I hid my tears well, I hid my fears well, I grieved in silence. I remember the grief was so painful some days that I would have to tell myself to breathe so that I wouldn't hyperventilate. Autism, all your information was so overwhelming. I contacted my friend, Christine. She was a godsend. She informed me of what places to contact, and where to begin. Christine, you helped me take that first step to meet autism face to face. For that I will be forever grateful.
I would get up with Gavin each morning and leave our Golden Retriever, Lillie, outside. Every morning Lillie would come back in. I would tell her to, "sit" and then give her a bone. I remember one August morning. We let Lillie outside. She came in. Gavin looked at her and said, "SIT!" His first word. That was my second step to meet you face to face, Autism. August, 2010, I was given hope. Hope that I would continue to hear my boy's voice!
Next came the countless hours of ABA (Applied Behavior Analysis), speech, OT, and services from a developmental specialist. Countless hours that consisted of working, learning, and most of all teaching my boy how to talk, socialize, and play. I continued to take more and more steps to meet you face to face. Some of those meetings were painful, and some of those meetings were joyful.
December, 2010, brought a gift. I walked into a room, Gavin looked at me and said, "Mama." Another step closer to facing you. That was the moment when I knew everything was going to be ok. I got to hear my boy call my name.
As I sit here today and reflect back to June, 2010, I see a new beginning. I see hope. I see laughter. I see joy. Each new encounter with you, Autism, brings me a little more understanding. I am not afraid to continue to meet you face to face. There are still some days where you bring me sadness and grief. There are still some days where I feel like you robbed me, you robbed my family, you robbed my boy. There are still some days where I honestly think that God got the wrong address and should have sent you to someone else. However, those days are beginning to be outnumbered. They are outnumbered by the days where my son's voice makes me smile, the days where his smile lights up a room. The days where my boy sings me a song.
So today, Autism, I shine a light on you. I shine a light for all you have taught me since June, 2010. I have learned to not take things for granted. I have learned that it is the little things in life that really matter. Autism, you have taught me to never give up, that it is ok to be different, and that love and support are what matter the most. You have made my marriage stronger, you have made my kids more accepting of others. You have taught us patience. You have encouraged us to work harder and never give up. Autism, I thank you and honor you with blue.
Sincerely,
Paula
The Mother of an Autistic Son
Tuesday, March 27, 2012
March Madness
Remember the saying, "March comes in like a lion and goes out like a lamb." Well, our March certainly came in like a lion. The end of February and into the month of March were very difficult trying times for our family on this journey. Gavin had a shift in behavior. Right after February school vacation, Gavin came down with a virus. He had a high temp, and ended up with an ear infection. Prior to the week he was sick, his behavior was, at times, unbearable. I honestly felt like he spent most of his day screaming. Screaming this ear piercing scream at the top of his lungs. He was sleeping horribly at night, up most nights three to four times. I spent most of the school vacation being exhausted. I realize now that he was probably trying to communicate with me that he wasn't feeling well, and was getting run down. I figured once his fever broke, the virus would be gone and he would be back to his somewhat old self with the exception of being on an antibiotic for the ear infection. Well, the week after was even worse then the week prior to him being sick. It was like Gavin was crawling out of his skin. He threw things when frustrated, screamed most of the time, and would not keep any clothes on during the day. It was nearly impossible to get him to even keep his underwear on. We were trying to figure out what changed. Did he eat something new? Did we change shampoo, soap, or laundry detergent? Then I realized that he was on an antibiotic. That was something new. Could this have caused him to be so dysregulated? My gut was telling me yes. During this time it was also difficult to get Gavin to sit still for any amount of time. Overall, he was just frustrated with life. Transitions were also difficult. I spent a great deal of time using visual pictures with Gavin to prepare him for a transition. As well as visual reminders to not scream, to use a quiet voice, to not throw things, and to keep his clothes on. It was purely exhausting. Oh, and I can't forget.....avoid making eye contact when he was having an outburst.
One Saturday in early March, William and Landon asked if we could go to Red Robin for lunch. Phil and I agreed with the boys that they deserved lunch at the Robin. I feel like most of the time we are doing things separately. One of us will take the two older boys some place, while the other stays home with Gavin. We are trying to work on scheduling individual one on one time with all of the boys. Which in today's busy world can seem impossible. We arrived at Red Robin and Gavin immediately gravitated towards a car video game. Phil waited to be seated. Well, the waiter seated us at a round table. My first thought was that there was no way Gavin was going to remain seated at a table. I was praying that Phil could read my mind. That he would speak up and get a booth. Sure enough he did! I could see him talking to the waiter and pointing to some empty booths. Then I could see the waiter shaking his head no. I was sending Phil vibes to not back down. To get them to change our table. Well, that didn't happen. I successfully transitioned Gavin to the table, however, Gavin refused to sit. He was up and running all around. Phil's reaction was to stand up and announce that we were leaving. I looked at William and Landon and saw the sadness in their eyes. It made my heart cry. I asked Phil to give it a chance. I then flagged down a waitress and told her about Gavin. I asked her to find us a booth. That I wanted to enjoy lunch together as a family and not chase my autistic son around the restaurant. She was great. She immediately moved us to a booth. Overall, it was a great lunch. The boys enjoyed themselves. Gavin did attempt to take off all his clothes. I was able to distract, entertain, and convince him to keep them on. He did take off his shoes, proceed to stand on the seat, jump, and flap. People were staring. Honestly, the new Paula didn't care. My kid was happy. He was being his happy self. What more could I ask for?
We also had Gavin's annual IEP review meeting at the beginning of March. Being in the role of a special education teacher during an IEP meeting is much easier then being in the role of a special education parent. Honestly, it is difficult to really listen to anything that is being said due to the fact that it is your child being talked about. Throughout the meeting I kept thinking, "Who would have thought I would be a special education parent someday?" "Who would have thought that it would be my son that has autism?" Gavin will continue to attend school full time in a PDD classroom. He will also receive speech and occupational therapy during the week. Gavin will also attend summer school. So, overall a successful IEP meeting.
The weekend after Gavin's IEP meeting we started the brushing program with him. Good news is that we saw immediate results within days. We are currently brushing him every two hours as well as doing joint compressions. Gavin's teacher and occupational therapist also created a sensory diet for him to use at home. Gavin is always seeking sensory input. So, this has also been helping. Since beginning the brushing program we have noticed an increase in eye contact, language, focusing, as well as playing with toys. We have two weeks left of brushing, then we stop. The effects of the program are suppose to have lasting effects and help to rewire the nervous system.
I also want to take a minute to give you a few facts from an Autism Speaks presentation that I recently attended. First, there is an 80% divorce rate of parents of children on the autism spectrum. Phil and I are working hard to not become part of those statistics. Second, it takes an average of $55,000 a year to raise an autistic child. Which now leads me to the G-Man Foundation. The G-Man Foundation Race for Autism Awareness will take place on April 15th. You can download the race application on the website www.gmanfoundation.com. The foundation will help kids and families affected by autism. In the midst of me creating this foundation, I have encountered some pretty amazing people early one. To Gavin's staff who made a generous donation to help get the foundation off the ground, to my colleague, Kathy, who is helping me organize the race, to my colleagues at work who are donating cases of water as well as raffle items, to my friends and family who are creating baskets for the raffle. Thank you. If you only knew how much I appreciate every single one of you. Today, one of the fourth grade students in Ms. Durkins' classroom was sent to my room. She was holding an envelope. Written on the front of the envelope was her name, Kimberly, Autism Awareness, and the amount of $22.25. She handed me the envelope to be used as a donation. I asked her where she got all this money. Her response was, "The 25 cents I found, the 2 dollars is from my dad (it was suppose to be my lunch money), and the $20 was my allowance." My eyes immediately filled with tears, and I had to look away. I praised her for donating her hard earned allowance to such a great cause. I asked her if she knew what autism was. She didn't. So, I did my best to explain it to her. I am hoping to introduce her to Gavin. I am amazed at what this young girl did. A great big thank you to Kimberly's parents! What an amazing daughter you have! Kimberly will always hold a very special place in my heart. When my dark autism cloud creeps up above and stays for a while, I am going to think of Kimberly and what she did for these kids. She will help clear that dark cloud away.
My niece, Nicole, recently had to do a project on a developmental disability. She chose autism. She asked if she could interview my family as well as Gavin. We did the interview last week. She presented it to her class today. I have not seen the video yet. But, I did ask her if I could get a copy to post on the blog. So, hopefully I will be able to do that soon.
April 2nd is World Autism Awareness Day. This is a day we celebrate the joys of having Gavin. We will wear blue to honor my boy. We have blue light bulbs and blue lanterns to "Light It Up Blue." It is also a day that I spend sometime recognizing Gavin's educators. Honestly, I feel like it is a holiday in my house.
Lastly, I am ready for March to leave like a lamb. I have learned a lot this month, even with all the madness. I have grown as a mother, I have grown as a person, I have grown as an educator, and I have grown a little more familiar with autism. I have grown to embrace it.
God Bless,
Paula
One Saturday in early March, William and Landon asked if we could go to Red Robin for lunch. Phil and I agreed with the boys that they deserved lunch at the Robin. I feel like most of the time we are doing things separately. One of us will take the two older boys some place, while the other stays home with Gavin. We are trying to work on scheduling individual one on one time with all of the boys. Which in today's busy world can seem impossible. We arrived at Red Robin and Gavin immediately gravitated towards a car video game. Phil waited to be seated. Well, the waiter seated us at a round table. My first thought was that there was no way Gavin was going to remain seated at a table. I was praying that Phil could read my mind. That he would speak up and get a booth. Sure enough he did! I could see him talking to the waiter and pointing to some empty booths. Then I could see the waiter shaking his head no. I was sending Phil vibes to not back down. To get them to change our table. Well, that didn't happen. I successfully transitioned Gavin to the table, however, Gavin refused to sit. He was up and running all around. Phil's reaction was to stand up and announce that we were leaving. I looked at William and Landon and saw the sadness in their eyes. It made my heart cry. I asked Phil to give it a chance. I then flagged down a waitress and told her about Gavin. I asked her to find us a booth. That I wanted to enjoy lunch together as a family and not chase my autistic son around the restaurant. She was great. She immediately moved us to a booth. Overall, it was a great lunch. The boys enjoyed themselves. Gavin did attempt to take off all his clothes. I was able to distract, entertain, and convince him to keep them on. He did take off his shoes, proceed to stand on the seat, jump, and flap. People were staring. Honestly, the new Paula didn't care. My kid was happy. He was being his happy self. What more could I ask for?
We also had Gavin's annual IEP review meeting at the beginning of March. Being in the role of a special education teacher during an IEP meeting is much easier then being in the role of a special education parent. Honestly, it is difficult to really listen to anything that is being said due to the fact that it is your child being talked about. Throughout the meeting I kept thinking, "Who would have thought I would be a special education parent someday?" "Who would have thought that it would be my son that has autism?" Gavin will continue to attend school full time in a PDD classroom. He will also receive speech and occupational therapy during the week. Gavin will also attend summer school. So, overall a successful IEP meeting.
The weekend after Gavin's IEP meeting we started the brushing program with him. Good news is that we saw immediate results within days. We are currently brushing him every two hours as well as doing joint compressions. Gavin's teacher and occupational therapist also created a sensory diet for him to use at home. Gavin is always seeking sensory input. So, this has also been helping. Since beginning the brushing program we have noticed an increase in eye contact, language, focusing, as well as playing with toys. We have two weeks left of brushing, then we stop. The effects of the program are suppose to have lasting effects and help to rewire the nervous system.
I also want to take a minute to give you a few facts from an Autism Speaks presentation that I recently attended. First, there is an 80% divorce rate of parents of children on the autism spectrum. Phil and I are working hard to not become part of those statistics. Second, it takes an average of $55,000 a year to raise an autistic child. Which now leads me to the G-Man Foundation. The G-Man Foundation Race for Autism Awareness will take place on April 15th. You can download the race application on the website www.gmanfoundation.com. The foundation will help kids and families affected by autism. In the midst of me creating this foundation, I have encountered some pretty amazing people early one. To Gavin's staff who made a generous donation to help get the foundation off the ground, to my colleague, Kathy, who is helping me organize the race, to my colleagues at work who are donating cases of water as well as raffle items, to my friends and family who are creating baskets for the raffle. Thank you. If you only knew how much I appreciate every single one of you. Today, one of the fourth grade students in Ms. Durkins' classroom was sent to my room. She was holding an envelope. Written on the front of the envelope was her name, Kimberly, Autism Awareness, and the amount of $22.25. She handed me the envelope to be used as a donation. I asked her where she got all this money. Her response was, "The 25 cents I found, the 2 dollars is from my dad (it was suppose to be my lunch money), and the $20 was my allowance." My eyes immediately filled with tears, and I had to look away. I praised her for donating her hard earned allowance to such a great cause. I asked her if she knew what autism was. She didn't. So, I did my best to explain it to her. I am hoping to introduce her to Gavin. I am amazed at what this young girl did. A great big thank you to Kimberly's parents! What an amazing daughter you have! Kimberly will always hold a very special place in my heart. When my dark autism cloud creeps up above and stays for a while, I am going to think of Kimberly and what she did for these kids. She will help clear that dark cloud away.
My niece, Nicole, recently had to do a project on a developmental disability. She chose autism. She asked if she could interview my family as well as Gavin. We did the interview last week. She presented it to her class today. I have not seen the video yet. But, I did ask her if I could get a copy to post on the blog. So, hopefully I will be able to do that soon.
April 2nd is World Autism Awareness Day. This is a day we celebrate the joys of having Gavin. We will wear blue to honor my boy. We have blue light bulbs and blue lanterns to "Light It Up Blue." It is also a day that I spend sometime recognizing Gavin's educators. Honestly, I feel like it is a holiday in my house.
Lastly, I am ready for March to leave like a lamb. I have learned a lot this month, even with all the madness. I have grown as a mother, I have grown as a person, I have grown as an educator, and I have grown a little more familiar with autism. I have grown to embrace it.
God Bless,
Paula
Sunday, February 19, 2012
The Diaper Bag
It has been almost a month since my last update, and so much has happened during this past month. First, I have to let everyone know what an amazing gift I received from the two PDD teachers, Lynne and Melissa, at Gavin's school. They had cards made for me. The cards are absolutely perfect, and they will help us to spread autism awareness. I am so fortunate to have met many kind people on this journey, and even more fortunate that some of these people are the ones educating my boy. Thank you, Lynne and Melissa, I am blessed to have you as colleagues as well as educators for my Gavin. I was able to upload the front and back of the card. If you scroll down at the end of the blog, you will find the picture of the card. Second, I have recently reconnected with an old friend, Keith, through Facebook. Keith and I used to work together at a special needs camp many, many years ago. Keith wrote a song called Prayer for Sunlight. He wrote it soon after my "Brick" blog. The song definitely describes the 'darkness' I sometimes feel about autism. Thank you, Keith, for writing Prayer for Sunlight. I am honored! I attempted to try to upload the song to the blog, however, I am not very tech savvy. So, here is the link: http://alonetone.com/keithlandryacoustic/tracks/prayer-for-sunlight
Gavin has had a difficult few weeks with a lot of stimming behavior. He will flap his hands, shake his head really fast back and forth, jump, walk on his tiptoes, script, and have echolalic speech. He has also had repetitive behavior like opening and closing drawers and doors, as well as putting on and off lights. Getting him to sit for even a short period of time has been very difficult. Sitting down as a family to eat dinner has been nonexistence lately. It has been exhausting redirecting his stims. Because Gavin can't communicate verbally how he is feeling, he will exhibit these types of behaviors. Some weeks there is an increase compared to others. I am now attempting to track the behaviors, and see if there is a pattern to them. The difficult thing is attempting to figure out 'why' he is doing this. I was recently told that even changing his shampoo, soap, or laundry detergent can cause this increase. Thanks, Lynne, for informing me of this. We did change soap recently. So, we have switched back, and are waiting to see if there is a decrease in these sensory seeking behaviors. I have also asked the Occupational Therapist who works with Gavin if we could look into a brushing program. A brushing program is based on the theory of Sensory Integration. The brushing technique uses a specific method of stimulation to help the brain organize sensory information. The brush used for the technique is a soft plastic surgical brush. It is effective in stimulating nerve endings in the skin. The brushing is done approximately every two hours for a specified number of days and then according to the needs of the child. I am very interested in trying this program with Gavin.
Gavin had a dentist appointment two weeks ago. This was his second visit to the dentist. His first visit did not go well. He would not sit in the chair, let alone let the hygienist or dentist look at his teeth. My fear is that he was going to be traumatized and would never let a dentist near him again. During his first visit, I had to hold him down so that the dentist could peek inside his mouth. The entire time Gavin screamed, cried, and was physically shaking. This was so heartbreaking. I do have to say I love the dentist that we go to. They are very patient and well informed about autism. They kept giving him breaks and was on board about the traumatizing piece. His second visit, was a bit better. Gavin was able to sit in the chair by himself. He let the hygienist and the dentist count his teeth. It took a while, but they managed to get a quick look. He would not let them put anything into his mouth. He walked away without being traumatized and hope that maybe next time he may let them touch his teeth. The hygienist did give me the tip of a cleaning brush so that I can work on desensitizing him before his next six month check up. Which leads me to talk about all the preparation that goes into preparing for visits like this. I woke very early the morning of his dentist appointment. I made sure his visual schedule was all set and included a picture of the dentist. I also printed a social story about going to the dentist. I continuously reviewed these things with him prior to leaving for the appointment. I also brought a bag filled with necessities (ipod touch, gameboy, books, toys) that may help to distract him during the visit. While in the waiting room, Landon asked me who is going to come in with him and sit with him. I totally forgot to prepare for this part of the visit. My focus was on a successful appointment for Gavin. I forgot that Landon hates the dentist. I forgot that Landon has anxiety over going to the dentist. My eyes filled with tears. What was I going to say? How could I even begin to explain to him that I forgot these things? Why didn't I make the appointment when Phil could be available to come? Thank goodness William didn't need me at the time. William went first, and by the time Gavin was done, I was able to sit in the room with Landon while he had his teeth cleaned. It was difficult to entertain Gavin due to my "bag of tricks" was not working that day. I was physically in the room with Landon, but I was not mentally there. I will from now on either schedule their appointments on different days, or when Phil is available to come.
Gavin also had a haircut appointment this week. Another appointment that I stress about. A year ago I would have to hold Gavin down during a haircut. He would yell, scream, and cry. His entire body would physically tremor. I would be so stressed bringing him to the hair salon. I felt bad for the women who came for a relaxing time at the hairdressers. When Gavin was there, that did not happen. I would try to make his appointments when I thought that it would be the slow time during the day. However, that was too unpredictable to tell. Over the past year, Gavin's therapists have done a lot of work with him on getting his haircut. They would run trials enacting this, and reinforce his positive behavior during the trials. His therapists told me that the day of his haircut we should rub his head as much as possible, especially around his ears and neck. This would help desentisize him. They also suggested to bring an edible reinforcer for after his haircut, and even during when he doesn't scream or cry. Lastly, they suggested a distraction like his iTouch to use during his haircut, and recommended breaks for him to regroup. Wow!! So much work goes into getting his haircut. Well, this past week, I was amazed. Gavin sat in the chair all by himself. He did not want to wear the cape. He got very upset when we attempted to put it on. It is all about NOT traumatizing him. So, we also try to remember to bring an extra shirt with us so that we can change him right after. He did not cry this time, he did not scream. Matter of fact, he actually giggled when our hairdresser, Darlene, cut the hair near his ears or neck. I can't say how grateful we are for Darlene. She loves my boy, is so patient with him, and always makes sure to tell me the progress she sees since the last time she saw him.
Yesterday, Phil and I took the boys to the playground. Gavin loves the playground. He loves to run, climb, and jump. Gavin spent most of his time at the playground running and flapping his hands. I am always on heightened alert when in public. I watch to see if anyone is staring or whispering. I am very protective. I was thinking yesterday how it is so easy to protect him now. What about when he gets older? Who will shelter him, who will protect him? I have to stop myself from thinking about this. Overall, yesterday, was a great day at the playground. There were lots of kids there. He did not interact with any of them. However, he sat at the end of a bench next to three adults. The man he sat next to said, "hello." Gavin went to run away. I redirected him and verbally cued him to look at the man. This man then looked at Gavin and said, "Hi Gavin, my name is Dennis." Gavin looked at the man and said, "Hi Dennis!" At that second I wasn't living in an autistic world. My eyes filled with tears. The man then put his hand out and asked for a hand shake. Well, Gavin's autistic mind has no idea what a hand shake is. When he heard hand shake, he proceeded to take both his hands and shake them at the man. The adults sitting on the bench chuckled and stated how cute he is. Gavin then ran away giggling. I contemplated telling the adults that Gavin was autistic. Instead I walked away smiling. If only this man knew how I will be forever grateful for his kindness. I wish I had given him a card. Since autism entered my world, I have come to appreciate kindness so much more.
A few exciting things that I have to mention is that the G-Man Foundation is officially a non-profit. We received checks yesterday with the Foundation's name written at the top. Wow! I can't believe my dream is becoming a reality. Also, there is a 5K run and a 3K walk scheduled for April 15th to raise funds for the G-Man Foundation. The walk will take place in Lowell, Ma. We designed a G-Man Foundation website. You can find it at www.gmanfoundation.com. A big thank you to our friend, Corey, for helping us with this. We are still working on setting up the website and attaching an application for the run/walk. Again, lots of things have happened within this past month.
I have come to realize something during this past month. I have thought about the time that William and Landon outgrew the diaper bag. How happy Phil and I were as parents to no longer have to be tied down to packing up and carrying a diaper bag. We celebrated when each boy graduated from their diaper bag. I have come to realize that Gavin may never graduate from his diaper bag. His bag no longer carries diapers. Instead his bag carries visuals, social stories, reinforcers, edibles, as well as lots of distractions to help during stressful times and appointments. His diaper bag is our attempt of always trying to stay one step ahead of Gavin. Such is the life in an autistic world. A world where that diaper bag will always exist. A world where there is so much work put into planning and preparing for appointments. A world where there is so much work put into planning and preparing for transitions and changes in his schedule. A world where there is so much work put into planning and preparing for family functions. A world that sometimes I am too tired to face somedays, a world where there is sometimes darkness, a world where there is screaming, yelling, stimming, crying, shaking, and a never ending diaper bag.
I have noticed lately that I when I see a picture of a family that I often ask "WHY?". Why were they chosen to have typically developing children? What does it feel like to NOT have an autistic child? What does it feel like to have all your children be typical? Why is life unfair? Why are things so much more difficult for my family? Moments like this is when I need to open the diaper bag. For in that diaper bag I will keep my family picture. A picture that may be wrinkled, imperfect, and even torn. However, that picture will warm my heart, that picture will answer my Prayer for Sunlight.
As always, thanks for checking in and traveling along with us on our autistic journey.
Fondly,
Paula
Gavin has had a difficult few weeks with a lot of stimming behavior. He will flap his hands, shake his head really fast back and forth, jump, walk on his tiptoes, script, and have echolalic speech. He has also had repetitive behavior like opening and closing drawers and doors, as well as putting on and off lights. Getting him to sit for even a short period of time has been very difficult. Sitting down as a family to eat dinner has been nonexistence lately. It has been exhausting redirecting his stims. Because Gavin can't communicate verbally how he is feeling, he will exhibit these types of behaviors. Some weeks there is an increase compared to others. I am now attempting to track the behaviors, and see if there is a pattern to them. The difficult thing is attempting to figure out 'why' he is doing this. I was recently told that even changing his shampoo, soap, or laundry detergent can cause this increase. Thanks, Lynne, for informing me of this. We did change soap recently. So, we have switched back, and are waiting to see if there is a decrease in these sensory seeking behaviors. I have also asked the Occupational Therapist who works with Gavin if we could look into a brushing program. A brushing program is based on the theory of Sensory Integration. The brushing technique uses a specific method of stimulation to help the brain organize sensory information. The brush used for the technique is a soft plastic surgical brush. It is effective in stimulating nerve endings in the skin. The brushing is done approximately every two hours for a specified number of days and then according to the needs of the child. I am very interested in trying this program with Gavin.
Gavin had a dentist appointment two weeks ago. This was his second visit to the dentist. His first visit did not go well. He would not sit in the chair, let alone let the hygienist or dentist look at his teeth. My fear is that he was going to be traumatized and would never let a dentist near him again. During his first visit, I had to hold him down so that the dentist could peek inside his mouth. The entire time Gavin screamed, cried, and was physically shaking. This was so heartbreaking. I do have to say I love the dentist that we go to. They are very patient and well informed about autism. They kept giving him breaks and was on board about the traumatizing piece. His second visit, was a bit better. Gavin was able to sit in the chair by himself. He let the hygienist and the dentist count his teeth. It took a while, but they managed to get a quick look. He would not let them put anything into his mouth. He walked away without being traumatized and hope that maybe next time he may let them touch his teeth. The hygienist did give me the tip of a cleaning brush so that I can work on desensitizing him before his next six month check up. Which leads me to talk about all the preparation that goes into preparing for visits like this. I woke very early the morning of his dentist appointment. I made sure his visual schedule was all set and included a picture of the dentist. I also printed a social story about going to the dentist. I continuously reviewed these things with him prior to leaving for the appointment. I also brought a bag filled with necessities (ipod touch, gameboy, books, toys) that may help to distract him during the visit. While in the waiting room, Landon asked me who is going to come in with him and sit with him. I totally forgot to prepare for this part of the visit. My focus was on a successful appointment for Gavin. I forgot that Landon hates the dentist. I forgot that Landon has anxiety over going to the dentist. My eyes filled with tears. What was I going to say? How could I even begin to explain to him that I forgot these things? Why didn't I make the appointment when Phil could be available to come? Thank goodness William didn't need me at the time. William went first, and by the time Gavin was done, I was able to sit in the room with Landon while he had his teeth cleaned. It was difficult to entertain Gavin due to my "bag of tricks" was not working that day. I was physically in the room with Landon, but I was not mentally there. I will from now on either schedule their appointments on different days, or when Phil is available to come.
Gavin also had a haircut appointment this week. Another appointment that I stress about. A year ago I would have to hold Gavin down during a haircut. He would yell, scream, and cry. His entire body would physically tremor. I would be so stressed bringing him to the hair salon. I felt bad for the women who came for a relaxing time at the hairdressers. When Gavin was there, that did not happen. I would try to make his appointments when I thought that it would be the slow time during the day. However, that was too unpredictable to tell. Over the past year, Gavin's therapists have done a lot of work with him on getting his haircut. They would run trials enacting this, and reinforce his positive behavior during the trials. His therapists told me that the day of his haircut we should rub his head as much as possible, especially around his ears and neck. This would help desentisize him. They also suggested to bring an edible reinforcer for after his haircut, and even during when he doesn't scream or cry. Lastly, they suggested a distraction like his iTouch to use during his haircut, and recommended breaks for him to regroup. Wow!! So much work goes into getting his haircut. Well, this past week, I was amazed. Gavin sat in the chair all by himself. He did not want to wear the cape. He got very upset when we attempted to put it on. It is all about NOT traumatizing him. So, we also try to remember to bring an extra shirt with us so that we can change him right after. He did not cry this time, he did not scream. Matter of fact, he actually giggled when our hairdresser, Darlene, cut the hair near his ears or neck. I can't say how grateful we are for Darlene. She loves my boy, is so patient with him, and always makes sure to tell me the progress she sees since the last time she saw him.
Yesterday, Phil and I took the boys to the playground. Gavin loves the playground. He loves to run, climb, and jump. Gavin spent most of his time at the playground running and flapping his hands. I am always on heightened alert when in public. I watch to see if anyone is staring or whispering. I am very protective. I was thinking yesterday how it is so easy to protect him now. What about when he gets older? Who will shelter him, who will protect him? I have to stop myself from thinking about this. Overall, yesterday, was a great day at the playground. There were lots of kids there. He did not interact with any of them. However, he sat at the end of a bench next to three adults. The man he sat next to said, "hello." Gavin went to run away. I redirected him and verbally cued him to look at the man. This man then looked at Gavin and said, "Hi Gavin, my name is Dennis." Gavin looked at the man and said, "Hi Dennis!" At that second I wasn't living in an autistic world. My eyes filled with tears. The man then put his hand out and asked for a hand shake. Well, Gavin's autistic mind has no idea what a hand shake is. When he heard hand shake, he proceeded to take both his hands and shake them at the man. The adults sitting on the bench chuckled and stated how cute he is. Gavin then ran away giggling. I contemplated telling the adults that Gavin was autistic. Instead I walked away smiling. If only this man knew how I will be forever grateful for his kindness. I wish I had given him a card. Since autism entered my world, I have come to appreciate kindness so much more.
A few exciting things that I have to mention is that the G-Man Foundation is officially a non-profit. We received checks yesterday with the Foundation's name written at the top. Wow! I can't believe my dream is becoming a reality. Also, there is a 5K run and a 3K walk scheduled for April 15th to raise funds for the G-Man Foundation. The walk will take place in Lowell, Ma. We designed a G-Man Foundation website. You can find it at www.gmanfoundation.com. A big thank you to our friend, Corey, for helping us with this. We are still working on setting up the website and attaching an application for the run/walk. Again, lots of things have happened within this past month.
I have come to realize something during this past month. I have thought about the time that William and Landon outgrew the diaper bag. How happy Phil and I were as parents to no longer have to be tied down to packing up and carrying a diaper bag. We celebrated when each boy graduated from their diaper bag. I have come to realize that Gavin may never graduate from his diaper bag. His bag no longer carries diapers. Instead his bag carries visuals, social stories, reinforcers, edibles, as well as lots of distractions to help during stressful times and appointments. His diaper bag is our attempt of always trying to stay one step ahead of Gavin. Such is the life in an autistic world. A world where that diaper bag will always exist. A world where there is so much work put into planning and preparing for appointments. A world where there is so much work put into planning and preparing for transitions and changes in his schedule. A world where there is so much work put into planning and preparing for family functions. A world that sometimes I am too tired to face somedays, a world where there is sometimes darkness, a world where there is screaming, yelling, stimming, crying, shaking, and a never ending diaper bag.
I have noticed lately that I when I see a picture of a family that I often ask "WHY?". Why were they chosen to have typically developing children? What does it feel like to NOT have an autistic child? What does it feel like to have all your children be typical? Why is life unfair? Why are things so much more difficult for my family? Moments like this is when I need to open the diaper bag. For in that diaper bag I will keep my family picture. A picture that may be wrinkled, imperfect, and even torn. However, that picture will warm my heart, that picture will answer my Prayer for Sunlight.
As always, thanks for checking in and traveling along with us on our autistic journey.
Fondly,
Paula
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