Working the Fan Club

?????????????????????????????????????????????????????????????????????????????????????????Blah blah blah Thanksgiving. I know it’s the best holiday of the year, not religious, for all Americans, etc.  I love the traditional Thanksgiving meal and all it represents in terms of giving thanks and appreciating all you have. For many special needs kids the holidays can cause a lot of anxiety. What is expected of me? I feel like that question is on Bryan’s face very often. Crafting an appropriate response  is the essence of communication. Am I supposed to respond? What exactly are you looking for? Bryan always knows a response is required but the kind of response required can be difficult for him. At holiday gatherings  people are often uncomfortable; there are heightened expectations about behavior from everyone. For me, I try to work on myself regarding Bryan and not worry too much if he is anxious, he is a young man now and for the most part he can hack a few hours at a family event. He tells me every day where we are going for Thanksgiving. We are going to my cousin’s house and he is sooo excited. I asked him what do you like about Thanksgiving. His response, classic Bryan, was “turkey and soda”. Love it! Truthfully Bryan will always be focused on food, but more importantly he will be focused on family. He truly loves when we are all in one place, and he feels the love and knows genuine, heartfelt warmth when it’s impressed upon him. Often kids with autism, particularly Bryan, use associations to communicate rather than actual conversation. What’s the difference? Well if Bryan sees someone he knows he will tell them the last thing that they did together. For example, if he sees some of my cousins he will say, “you came to my Bar Mitzvah”. That is Bryan speak, for hi, how are you? I love you, I miss you,I acknowledge you. You see the conversation starters are not easy for him. However, what is more delightful than seeing someone who greets you with something relating to the last time you saw each other? The great thing about my family is that they dig it. They love his little quips and his trips down memory lane. They embrace his uniqueness and we are forever grateful and humbled by it. To know, as a parent of a special needs child, that your family holidays are a safe place for your kid, well that’s truly something to be thankful for.

Years ago we were at one of my cousin’s house for Break the Fast on Yom Kippur. Bryan was probably around 8 or 9. They always had a ton of people over and it was good for us because there were so many kids around it felt warm and secure for us and the boys. Bryan decided to go swimming in his clothes. Some of our family was very distressed by this and gave us some crazy looks. What I always remember about that was my cousin’s teenage kids. They laughed and joked about it. They did not do this in a teasing way, but more of an appreciation for his cleverness to get in the pool and sort of avoid holiday stuffiness. I was a bit stressed at the time but looking back on it all I can do is think, wow, he would never do that now, he’s grown a lot. And for the kids that were there, well, they just love him for being Bryan. At our celebration next week a lot of those same kids are coming in from college or getting ready for college. They have matured, moving on to the next natural stage of life. While I admit I absolutely love hearing about their new adventures, new friends, and life experiences, it always stings just a little bit. Somehow that, what will Bryan get to experience is always stuffed down there somewhere and I have to stifle the urge to let it surface. I remind myself, that his path is his path and we just have to take it slow. Perhaps a few holiday cocktails and a few good laughs will ease the way. Bryan, however, will not be worried about anything except dessert and what time we are going home. Happy Thanksgiving!

Base Camp, Everest

Last Sunday I woke up with a stomach virus, you know the drill, no visuals necessary. I also had a wrenched neck and back after volunteering on Saturday at Feed the Hungry and pretending like lifting boxes was something I do every day. The combination of my stomach, neck and back literally pushed me way way way over the edge emotionally. Get it, mind-body connection? In my case my body reacting poorly forced my mind to become unglued. If you play those mind games where they ask you to say one word to describe yourself, fortunately or unfortunately my word would be “responsible.” How lame is that? To get to 50 years old and that’s the word that comes to mind, my alternative is “capable” but that would mean I would have to think very highly of myself and my mind is not quite there this week. So when you are the responsible person and you are overwhelmed beyond belief, combined with physical discomfort, what’s the result: meltdown, that’s what happens. In my case, I would not say meltdown really, more of an implosion of sorts. I literally could not get out of my own way. You know if you cry a lot while taking lexapro you’ve reached somewhat of a milestone.everestThe doctor doubled my lexapro prescription. Better living through chemistry!

The only way I can explain how I felt was imagine you are at the bottom of Mount Everest. You know you have to get to the top or at least to the first summit so you won’t be too embarrassed. In your mind you are thinking, I’ve been climbing all of my life, I got this, I’m good. You are standing there with your fancy gear and ropes and then it starts to snow a little, no worries, I can handle snow. You climb a little more and then it starts getting super windy. Again you think, come on, I know about wind, I will just hold on a bit tighter. This is all well and good until you stop for a water break only to realize you forgot your water bottle, a completely amateur act, bullshit for novices. And then, then, what do you do? You fall back to the ground knowing in reality you cannot climb without water. I was without water all week. Loser!
I am trying to learn this week. I am trying to learn that it’s ok to have people help you when you need it. My group at work allowed me the time to unplug and regroup and I am grateful. I have also learned that when you need a break you have to take it before your life breaks you. I have this need, this drive to be productive, to get shit done, so when I don’t I feel worthless. I have learned that my boys have compassion and empathy. Bryan was very snuggly all week and he kept saying, “Mommy, you’re sick.” He kept coming over to me wherever I was and just hung out with me. Bryan has his way of letting me know that he cares. Jason gave me plenty of hugs but on Wednesday morning, when I truly felt my worst and was crying and puking at 6am and looking like hell, said to me “you look beautiful.” I see an Oscar in this kids future. Earl allowed me to freak, didn’t try to talk me out of it, didn’t try to minimize my feelings, I am not sure if he learned too or he was afraid to poke the bear. Either way he treated me with kindness and respect for the person I am and that too helped the healing process. Kindness and warmth should never be minimized.
In reading back this post as I am writing I am thinking, wow this is not about autism. Does that mean I am falsely representing my blog? Well I will offer up some autism stuff. I went to the doctor on Tuesday and let loose all of the problems and issues that had me in knots. He asked me how things were going with my son, meaning Bryan. I was able to say, without hesitation, that right now Bryan is great. He is communicating better, he is more aware, he is more engaged. He is loving school this year and is genuinely happy to go each day. When I see him making progress, I know I can make progress too.