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
