Sanity Check, Part Deux

I think I need to have a recall on my last blog. That rosy picture I painted lasted a hot minute. Within hours of the publishing of the blog, things went downhill quickly. Midday Thursday got a very unusual and unwelcome phone call from Bryan’s new school. Please come get him, he is out of control, screaming kicking stuff and he just can’t stay. Um, what??? Never, in all of his school years has such a thing occurred. Bryan pinches and can be physical with Jason or me, but NEVER at school. Luckily he was not hurting anyone there but apparently kicked some stuff outside. Not sure of the details, after come get him I had a hard time processing language. I was in a work training program and felt trapped. I called my sitter to go get him, quick triage but in my gut I knew I had to leave. How on earth would I concentrate on anything knowing my boy was suffering. I didn’t need anyone to tell me he was suffering, a mommy knows all. Bryan is so full of anxiety and desire to please, I knew he must have been strung out. I had spoken with him on the phone, tried to give him a little tough love, but I didn’t even sound convincing to me.

His Dad and I agreed to take him to his psychiatrist and we met there with him. This was an acute situation that required a few different strategies, some increased or new meds to get a grip on the anxiety and some behavioral consistency. It is not lost on me that between the divorce, time sharing, a new school, Jason’s upcoming Bar Mitzvah the pressure on him is mounting. He cannot fully express himself with language and as he gets older I’m sure it is more and more frustrating for him. After a good session with the doctor I took him home. I felt like a wounded animal. I just wanted to retreat. I lost it a few times throughout the day and that adds to the guilt; always wanting to stay composed, on top of stuff. At home he was anxious but not as bad as I expected. Four thousand times of “I will do better at school tomorrow. I will have good behavior at school tomorrow” reminded me just how much he was punishing himself. I’m not a bystander, however, I’m his mom and I needed to work it out with him. We lied on his bed and snuggled a bit, I let him know how much I understand how he’s feeling and it’s ok to have a bad day. Kids with autism are never allowed to have a bad day. If they do you get reports home, phone calls, blah blah blah. The pressure is enormous. He took a bubble bath and went to bed on the early side. If sleep can help, yay for that. He is a man after all, and men can sleep after anything!! One day at a time…

Sanity Check

sanity checkFirst week of school; new school for Bryan, private school focused on kids with neurodiversity. That’s the new term and I think it’s ok. Essentially the focus will be on life skills and academics that prepare him for independence. Independence is the goal, always.  At age 16, he will have a job in the community. All teenagers need a job, but for kids with autism to learn how to appropriately interact with people is phenomenal. While it’s only day 3, I have a good feeling about this placement. The demands are tougher, but it’s important to always raise the bar just enough to watch him stretch. His anxiety has leveled off, a great sign if you know Bryan.

This week at work I’m in a training class. We had to introduce ourselves and say a hidden talent that we have. I wanted to give sort of a snarky answer, but I’m a professional, so I said I write a blog about my experiences as a parent of a child with autism. I had two folks in the class, one who I know from a long term project, and one who I had just met that day, come up to me to ask about the blog. Neither one are parents of a child with autism, but both knew families with autism. They were curious and engaging and of course I was happy to talk about the personal benefits of my blog.  I have not written too much lately but I was reminded of the value sharing experiences have for other parents, as it has done for me. So this morning one of the facilitators of the program came up to me to tell me he has two kids, one, his older child, has autism and his younger is a typical child. Obviously the same situation I have. We chatted about our experiences and I instantly felt connected to him. It’s like a secret club that most people don’t understand. I told him that I try to read anything I can written by adults or kids with autism. I want to peek into their brains and study their thoughts. I want to know how they process emotions. I want to learn how they perceive their lives, are they happy, what do they aspire to? How do they feel about their parents? I know their voices are not Bryan’s voice, but I can draw analogies that help me to reach Bryan. We also talked about he relationship of our kids as siblings. I could see he had a similar situation to me; his younger child the empathetic sibling always protecting the older one. Their roles are so key to the family functioning and we discussed how much we admire the younger ones who have such pure hearts. We joked about the stress on the family yet wouldn’t change anything. I felt some tears coming on but managed to keep it together. Just going back to that basic feeling of connecting with another person in the same boat brings out raw emotions.

I am reminded that I need to engage more with my autism community and my blog. I need this for my own sanity and my own parenting. It is not enough to think, ok he went to camp, they taught him stuff, and now a new school, he will learn stuff. I don’t need to do what I used to do, prompt him, drill him, etc. I need to just enjoy him, spend time with him, and love him completely.

Special thanks to Michael Corwin for the title inspiration!

Achieving Manhood

LittleJ2015Jason just got home from camp. I shared with him some info about a very close family friend whose child may have an autism diagnosis. I told him for a few reasons; first, is he loves this child and would be very upset with me if I kept this info from him. Secondly, he is very compassionate, and finally, he gets it. He asked many typical questions and as he asked I couldn’t help but start to cry. Jason, with the most earnest look, said to me “why would you be sad if X (child) had autism?”. So there you have it, complete acceptance. I explained that I was emotional because I know how hard it is to deal with autism. He looked a bit puzzled, but then said, “Mom, look at Bryan, he has autism and he’s fine.” Now I was really crying. I am full on sobbing. That is truly how he sees him, in some ways. I am not sure if this is because Bryan is still away so he’s not faced with certain behaviors that drive him nuts, or because it is some sort of protective mechanism, or just his perspective. Any way I look at it, I am impressed.

It is always a lesson to parents with autism who have a typical sibling. The typical sibling has never grown up in a household without autism. They, unlike, us, know no different. He has never had a brother without autism. However, the warm acceptance of this should still not be minimized.

My behavior, however, made me feel a bit shameful so I offered more of an explanation to him, as if in some way I could, in one conversation, explain that I love and adore Bryan with all of my heart, but that you want your kid to be as perfect, correction, as normal/typical as they can be. As a parent, you cannot project that upon the other kid, nor should you, it’s not their burden. I really didn’t have to get far into the conversation before he stopped me to tell me he understands. He said “you are the mom”.  Next we spent some time talking about why does the doctor think this child has autism, etc. etc. etc.

Jason’s Bar Mitzvah is less than one month away. While I love to express myself in writing, I have been having a very tough time putting into words some sort of speech or toast to him. I feel as if words that can adequately express the love, admiration, pride for him are swirling around in my brain but cannot connect cohesively. I have already deleted 4 drafts. UGH.  Bryan will be home tomorrow night. I am hopeful that getting back into the routine of watching the boys together will allow the words to come together.