Bryan loves music. When he and I are alone in the car, he is DJ Bryan (he loves when I call him that) and he plays his repertoire of songs. He has pretty good taste in music but often his selections are tied to a movie soundtrack to whichever movie has captured his interest. As with many things autism, he will repeat his selections over and over. He likes Ricky Martin’s La Vida Loca and it’s kind of fitting sometimes as a commentary on my life. Never really sure what the root cause of the repeating is; but many kids with autism repeat scenes from tv/movies/videos over and over. I often wonder if they do it because they are really trying to understand what’s happening, but I don’t think so. I think once they like something it’s comforting to keep hearing it and seeing it. Not a psychiatrist here, just an observer. Bryan went back to school on Thursday but not before he was off for a week due to Hurricane Irma. I think we were all suffering from what I call “Hurricane Fatigue Syndrome.” You know you wait so long for the storm to come, you prep, shop, etc. it comes and then the aftermath of clean up and no school can be exhausting. Couple this with nothing for the boys to do, well Bryan gets a little antsy to say the least. When Bryan starts saying things like “I pinched Matthew Lazarus on November 17, 2015” he is really all over the place. The kid has an unreal memory for dates and details. He can look at a photo and give you so much info about what was happening, what we had just eaten or done or where we were or where we were going. Amazing. He knows no one wants to hear this stuff, what I call “nonsense talk” but his mind is all over the place from lack of routine and structure.
I took Bryan to see my mom on Saturday. Every now and then when I’m there I look around at the other residents and feel so overwhelmed and emotional. There are many people who are more physically infirm than my mom, so many who seem like lost souls, just bodies sitting there. There are also some that seem way more with the program and I wonder if they belong there, but I don’t know their individual issues so I just watch. On Saturday afternoon they had a woman playing music, an electric violin. Like many of the musical guests they have at the home, she plays old familiar tunes. She started to play Sunrise, Sunset and I caught the eye of a man I often see who visits his wife. They are a little younger than my folks and the man had tears in his eyes and hugged his wife. We smiled a teary knowing smile at each other. He got her up to try and dance with her but it didn’t work too well and they just sat down. I was really crying then, but when Bryan sees me cry he starts to giggle. He has such a nervous, loud, giggle that some of the female residents start shushing him. I tell him to quiet down but he starts to giggle more. The funny, ironic funny, not ha ha funny, thing about it is that my mom loves to giggle. The two of them are giggling it up and these ladies are so furious. These women are shushing and carrying on and saying “it’s terrible” and one of them is kind of scolding Bryan. I decide it’s time for an exit and Bryan and I kiss my mom goodbye. I turned around to one of the family members with this gaggle of shushers and I said, “he can’t help it, he has autism.” OMG who am I? I never do things like this, apologize for my kid. I was so upset and angry over them, these ladies with Alzheimer’s shushing my kid just laughing during music that I just lost my sense of reality. We walked out and of course now Bryan is totally anxious. “I’m sorry I was laughing in Grandma’s place. I’m sorry the ladies were mad at me. You’re mad at me” ugh ugh ugh. We left and got into the car and I apologized to Bryan for apologizing for him. I am fairly confident he didn’t completely understand my apology, but I needed to do it nonetheless. You see while it was a bit disruptive, I do not apologize for my kid. I think if anything, I wanted to shame them for shushing my kid who couldn’t and shouldn’t be shushed. I know that is completely wrong. People are just being people and I have to do better, but in the moment, you want to metaphorically smack people in the head and say, ” do you think i’m a bad parent allowing bad behavior? Do you think my almost 18 year old kid would not be respectful, not control himself if he could.” Why was I trying to reason with 2, 70+ year old ladies with Alzheimer’s?? I would like to chalk it up to Hurricane Fatigue Syndrome or sleep deprivation but I think it is just a reflection of the nuttiness that is my life sometimes. I mean I took my kid with autism into an alternate universe, what was I expecting to happen? Typically we visit with her more privately but she loves music and so does Bryan so it seemed like a good idea at the time.
Yesterday we went again to see my mom and she was with my dad and a friend. She was calm and the visit was better, more controlled. Or at least I was more controlled. DJ Bryan and I drove home and he blasted La Vida Loca. He likes to do the karaoke version of the songs so he can learn the lyrics, he is also very visual and likes to use the closed captioning on the tv so this doesn’t surprise me. At night when he was getting ready for bed I was snuggling with him. I said again that I was sorry if I made him feel bad on Saturday at Grandma’s place. He looked at me with a little confused look when he is not sure of the right response. I gave him a big hug. We watched a little tv, we are now watching Underdog (movie of the week). He said, “I love being with you.” More crying, more giggling, la vida loca.