Bumping up and down in my little red wagon

Such a weird existence. Not sure what is going on with me but I’ve been really depressed. The kind of depressed where you can’t get things done. That is not me. I have been staring at camp paperwork hoping it will complete itself. I have been doing triage at work. I am not a triage kind of person. I am a more of a doomsday prepper. No I don’t stockpile water but I do stockpile camp labels and I’m way behind. I think I had post Bar Mitzvah traumatic stress syndrome or something, but I’m really off kilter. I wasn’t feeling well for a while but I’m starting to feel better so I’ll try to blame it on that. I need a good kick in the ass and get moving. These kids trunks won’t pack themselves and the more I put things off the worse it will be. I am good under pressure, but who needs more pressure, right? The other piece to this is that Bryan has had a great year at school. I have been spoiled. No issues, good grades, but I’ve coasted a bit; enjoyed it a bit; not questioned things too much. That is wrong and somewhere in the back of my mind I know that will catch up with me. Autism requires foresight and planning and I’ve been mentally off duty.
Each year everyone asks us what we are going to do while the boys are away at sleepaway camp. Jason goes for 6 weeks, but he may stay for 9 this year and Bryan goes for 7. They go to separate camps and they both have had very successful summers.For Bryan, the mention of camp increases his anxiety greatly because it is a long time for him to be away from everything and everyone he loves while the demands on him are tough. He can’t just watch tv, play video games and eat whenever he wants. We are not complete pushovers (ok I am way more of a pushover than Earl-I admit it) but it’s tough when you think of how difficult it is for him to do many things and I know camp forces him out of his comfort zone. But that is of course why we send him. As we anticipate them going away, I have these visions of cleaning the house, getting rid of a lot of clutter, going through our playroom and the boys rooms. I do think about having fun and relaxing, but I’m goal oriented and it’s my nature to want to accomplish things. Last summer we went through all of our hard copy photos and organized them and started planning Bryan’s Bar Mitzvah. Most people tell us, oh you should go away, take a trip,etc. With spending money on the Bar Mitzvah and camp, we will be lucky to go out for pizza!!! To me, just the quiet, the calm of our own home, with our puppies and our cat will be vacation enough.
I took Bryan on a playdate recently. His friend goes to a different middle school but they were in the same class for a few years before. I really love the parents, they are also a Jewish family but they are from South America. Bryan’s friend and his mom came to the Bar Mitzvah. For the 2.5 hours I was there with Bryan I sat with the parents and talked. This was the first time the boys actually played together, not just in the same room or in the same pool. We really didn’t even know they were there, and that was huge. It reminded me how important playdates for him are and how much further he has come in his socialization. The parents and I were sharing some of our fears as the boys get older. Will the boys ever live on their own? Will they ever drive a car? College? Have a family? We talked about the special bond we as parents of special needs kids have with each other and how most people do not “get it”. It’s true, you can’t import experience to people, so they can only get one viewpoint. I mean you can see a dress on a hanger but until you put it on and see how it goes with the shoes, do you know if it will really fit? Autism is like that. You have no idea what it feels like until you “try it on”. We are in a secret society filled with angst and love and fears and triumphs all rolled into one. I can spot a kid on the spectrum a mile away and the look a particular person gives me when they see Bryan I know immediately if they are “one of us” parents or an outsider. A little twinkle in someone’s eye is all I need to figure it out. I can also take someone down with a dirty look if you look at my kid with a menacing glance. The mother cub comes out and I have had my share of encounters with some less than accepting people. I am sleep deprived, intolerant, and I’m from NY. Don’t mess with me!! I have also witnessed exceptional grace and kindness. One time about two years ago the boys were getting haircuts. Bryan was not behaving too well so I decided to take him to another store, which happened to be Target, in the same shopping center while Earl stayed with Jason. On the short walk over he pinched me and hit me several times. I was trying to get him to calm down but really couldn’t. A lady was watching us and I could see she was sort of staring like “what the heck?” I ignored her and went into the store with him to try and get a few things and distract him. He was screaming and crying and hitting and pinching. I was trying to stay calm and keep him calm. This woman was still watching but I was not aware of her. She walked over to me and said “I see you are having a tough time, can I just give you a hug.” It was one of the kindest acts. I accepted a gentle hug but it triggered some tears. She kept saying, “are you ok?” and I said, “yes he doesn’t mean to hurt me, he loves me, he just can’t help it.” I think I needed to hear myself say that too.
I always need to remind myself it’s okay to take a break from chasing down every autism thing and just let him go along with the ride too.

red wagon


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