I lost it, I melted down, I flipped my lid. Yesterday, I was like a leaky pipe, no matter what I did, the tears kept coming out. No amount of lexapro could stop it. I think it was like the boy with his finger in the damn, after all of the stress from Bryan’s meds, the physical stuff, the lack of sleep, the screaming, and the pressure, the damn just broke.
As always, there were a few moments of sanity sprinkled throughout the weekend. Bryan was great at speech both days and at sports. I went to Soccer Buddies in the afternoon with him on Saturday; he has the same buddy, Max, for the 4th year in a row. Max is a senior in high school. First year they were together Bryan was a little guy, now Bryan is almost as big as Max. They have a bond, Max has coerced Bryan into running and kicking the ball. I love to watch these two run together, I can hear music in my head. Ironically enough, for a child who is unable to negotiate social situations using his words, he has a lot of great relationships. Bryan has this way of getting under your skin with all of his “i love yous” and his squeezing. One of the football buddies from a few years ago told us that Bryan tells him that he loves him way more than his parents. Hey, that never gets old!! Bryan has a way of making you feel special, he will give you hugs and squeezes and can smile a lot. His new thing is telling someone he is going to miss them, he gets that concept and can articulate it. He also will tell you whatever he last did with you, for example, when he sees my cousin Andy he always says “We saw Horton hears a Who?” because they went to that movie together. While not true conversation, he has the ability and desire to relate. Earl and I are the same way, we both have friends from when we were small children and we both are very sociable. Earl is the most loyal friend someone could have and will do anything for a friend. I think this quality is one of his best and certainly has helped him navigate our autism journey. He volunteers to do special needs cub scouts with the boys and with a few other fathers that he bonds with; they have each other’s backs and it is so nice to see the men have a support network. It’s hard enough for the moms but for the Dads it is tough because men don’t usually share “feelings”. He is with a great group of guys and they “laugh” at the crazy stuff and give each other that “atta boy” when needed.
For me, the autism community itself functions as a support group, cause let me tell you most people I come into contact with do not get it. To me, having a child with autism is like getting your heartbroken over and over. You think things are going well, you feel good, you get into a nice happy routine, then wham, something stares you in the face and you realize, shit, this sucks. If you’ve never read the Holland Shmolland piece, let me know and i’ll send it. It’s all about living in the war zone of an unplanned life. I don’t blame people, what experience did I have with autism, what do they? However, I get, “I don’t know how you do it” or “you have such a hard life” GRRRRRRR that makes me nuts, save your pity. Everyone knows that when they have a rough patch pity doesn’t help, what helps? Empathy, Action, Friendship. I remember Holly Robinson Peete, whose son has autism and is a huge activist (also my personal hero since she says autism and not autistic) saying, you want to help your friend with autism, offer to babysit and mean it. Don’t tell them how bad you feel, do something.
When I went to soccer on Saturday afternoon I ran into my friend Jen, and we just laughed and vented about the challenges we are facing. I saw a few other parents I haven’t seen in a while who also are on this journey and the tacit understanding, the sheer commonality, offers comfort. We commented on how big our kids have gotten or what new thing we are trying or have ruled out and just felt the blanket of familiarity around me. No one to judge, just acceptance. My cocoon.