Incidental Beneficiary

In case you don’t know me I went to law school. I am a lawyer but do not practice. One of the things that happens after you go to law school is that you have a new language. Lots of Latin expressions and some legal expressions that stay in your head. So Jason and I were sitting outside of a movie theater waiting for Bryan on Sunday. Bryan had lunch and went to the movies with my sister (aka Aunt Frannie) and my mom (Grandma). I had this thought in my cooky head that Jason is the incidental beneficiary of Bryan’s autism. For those of you lay people (what a dumb expression) an incidental beneficiary is a party that indirectly benefits from a contract but is not a contracting party. Ok so my interpretation is not literal, we have no contract here. Because Bryan cannot hack certain activities, Jason gets to go and do a lot of things that Bryan cannot. On that same day, my dad (Grandpa) took Jason to the Sony Ericcson Tennis Tournament in Miami. I know exactly what kind of day it was for him. I had alone time with my dad and with my grandfather when I was a kid. I knew he would be spoiled, would eat whatever he wanted, and would feel special. I always share with the boys the wonderful memories I had growing up and going places with my Pop (my grandfather) and my cousins; the orange felt Knick sweatshirts (if you are from NY you say you are a Knick fan and a Giant fan; you don’t say Knicks fan or Giants fan), the cotton candy, the pennants that never got put up in my girly bedroom. Jason gets it and he had a burger, ice cream, got a t-shirt, a hat and a giant tennis ball and was home by 3pm, because HE was tired!! Reminds me of the time my Dad took my cousins and me to a Giant game, we sat on the 50 yard line but between the rain and the food, we made him go home before the half ended. But what really made me think was the incidental benefit that Jason gets from me. It’s not that I don’t talk to Bryan all of the time or spend time with him or do things with him. But because Bryan cannot communicate with me like Jason can, Jason and I have tons of little private jokes and our own thing. Now lots of people have this with their kid; private jokes and a good rapport. What I treasure about my relationship with Jason is that he shares in the Bryan stuff. He gets the triumphs, the little things, the joy. He gets the significance of a Bryan moment. We were waiting outside the theater and there was a poster for Jason Bateman’s new movie titled “Bad Words”. Bryan loves to say “bad words are bad”. How true!!! So Jason and I look at the poster and look at each other and just start to laugh. Not a chuckle, but a full on belly laugh. He has this maturity and depth that I admire so much. I love that I don’t have to explain to him why a small amount of Bryan progress is so huge.
There are other incidental beneficiaries of Bryan’s autism all around us. Our psychiatrist. We went to see her yesterday to talk about Bryan’s meds and perhaps something for Jason to help with some ADD type issues. She started with one patient and now sees all four of us. This is more of a joke, but the friendships, the surprising acts of kindness have all been incidental benefits I could never predict. Today I got an email from a HS friend about an article on autism in the NY Times. I would like to tell you something like this is unusual but I am lucky enough to say that I have tons of people in my life that send me articles, links, etc. So while I may be the designated beneficiary of these items, the incidental joy from these gestures is purely incidental.

Throwing the BS flag

One of the guys I work with always says “I’m going to have to throw the BS flag on that” for a comment or a statement that he thinks is BS. He’s a big sports enthusiast and coach of his son’s baseball and basketball teams so he uses sports type references all of the time. I like this expression and have adopted it. So recently there was an article in the NY Times and a piece on Good Morning America about parents of an adult with autism that used Disney movies and characters as a way to get their son with autism (nope, still not saying autistic) to speak and have conversation. So a little bit I need to throw the BS flag. I am not discounting what these people said or did or their success. Since this young man is now 22, who knows if what he had was not really autism at all. He might have had seizure disorder or something else. The criteria for autism or autism spectrum disorder is different today than it was then. I am not here to judge what another family does to work with their child. After all, these kids come with no instructions, protocol, treatment path, nada. There is no roadmap, damn we are all Christopher Columbus with 3 boats and no captains. However, where I get concerned and where I need to say “please hold” before you all go out and order the 27 dvd box set from Disney is that every kid or each kid with autism is completely different. This is more than just a casual remark; it is profound and it is one of the factors that differentiates autism from other disorders. The quantifiable info just can’t exist. We have 3 other families that we know very well. When we all used to spend time together there were at least 6 kids with autism among us. We practically had the whole spectrum there; a literal Venn diagram of delay disorders. So while I don’t want to throw the BS flag at this family per se, but at the whole, I throw it at the this will work for you too. Not that it isn’t a good idea, but I just feel caught in the chasm between what is good and well-intentioned and what is the cure. Perhaps I am coming off negative. I know it’s a good idea to publicize. I know it’s a good idea to try new things. But I guess more than anything I am of the mindset, if anything looks too good to be true, it probably is and some of these things, methods, fixes just seem to give people the wrong impression. Admittedly, I am biased but I still feel like a disclaimer of sort needs to appear on all of these new stories, not unlike when they advertise meds. This worked for X but may not work for you. Or, this may cause other side effects such as X or Y. I also throw it at the people who say their child has autism but doesn’t. Yes, Jenny McCarthy I am talking to you.
However, I am not cold-hearted and do appreciate the triumph of this family and this young man. It is fabulous to see a kid on the spectrum find his voice, literally and figuratively. I am also extremely happy as a parent that they can find a way to communicate with their child. I think it is essential that we remain open to new ideas, just not to cling to them like they are a magic pill. If you have a kid with autism and you are still waiting for the magic pill, stop on your way home to buy a lottery ticket to pay your bills. Same reasoning. It could happen, but really, what are the odds?

Payback’s a big bitch

The fun never ends. I had episodes of anxiety as a child. I had diarrhea before anything important, which included a test, the first day of school every year, and any significant change. I made my parents miserable and I worked them over. I screamed, cried and carried on. When Bryan was little, about 4. he had a very tough time adjusting to school. I watched him through a doorway cry and scream and say “I want Mommy” for 45 mins. Payback, ugh. Fast forward….last week Jason was having some preteen social issues at school. You know, the usual, wasn’t picked for a team in PE, some kid teased him about something. On Thursday night he was completely distraught, stomach ache, and a defiant declaration of I’m not going to school tomorrow. Yep, my mini me. And not in a good way if you know what I mean. On Friday morning I had to beg him to get up to go to school. My inner child was so angry at the adult me. My child self promised my adult self that I would never make my kid go to school if they were upset. I dropped him off at school, watching him walk away from the car with his head down and felt horrible. My heart was in my throat all day.
Tonight Earl has softball and since the weather has been so nice I thought maybe I would take the boys to a local burger place, sit outside and have some fun. Well basically we got hit by a brick. That brick was Bryan. It has, thankfully, been a long time since Jason and I experienced what we did tonight. Let me see if I can paint the picture for you. We walk into Burger Fi. You have to go up to the counter to order. Two elderly ladies were in front of us trying to figure out the menu and what to order. Bryan is very impatient, particularly when he is hungry. However, it was early and he is able to control himself. Well, no such luck tonight. He pinched both Jason and me about 10 times each. What happens is he pinches one of us, very hard, because it’s with all of his strength, we react and then he goes for the other one. I tried to stay calm and calm both of them down. Bryan was upset and screaming and Jason was screaming and crying; part victim part disciplinarian. I don’t know what is wrong with me. I did not want to leave. Somewhere in me I wanted to prove to myself that I could hack it. Jason kept saying let’s get the food to go. I refused. Interestingly enough some people were looking at us but that only makes me get calmer, like I better dig deep to handle it. I knew Bryan was extremely upset because I had to talk him into eating and also to drink his soda. He absolutely could not get to himself. I wanted to feel bad for him but to be honest, I was a little afraid. This kid is super strong. I have to be confident that I can handle the 5’5″, 168 lb Bryan; it’s essential for my survival. I tried to dig deep and use calming words and tricks. Jason, who typically is so helpful when Bryan acts up, had nothing left in him. He was hurt, hungry and totally embarrassed. So what did this mother of the year do? I told Bryan if people see him hurting us, they are going to call the police. If they call the police they may take you away. Before you decide I am the worst mother ever, walk, not even a mile in my shoes, try 2 blocks. You see, there are layers here. Layers of fear, frustration, empathy for Jason, and overall exhaustion at work here. He desperately wanted ice cream/dessert but of course I refused. The drive home was not much better. He sat in the back while Jason and I sat up front, but he reached up and pinched Jason and me again and dug his nails into Jason’s scalp. So while attempting to drive one kid was screaming and the other was crying. We got home and I suggested that Bryan take a nice warm bath. The water typically calms him. But, like how I was as a child, I never wanted my parents to be upset with me, and Bryan is the same way. It pains him if we are mad at him and he cannot chill out. The bath barely helped, so now I’m just praying for exhaustion and sleep.
So, Mom and Dad, I’m sorry for the anguish I caused but payback’s a bitch. Oh, and yes, I took a Xanax@