Community

I sat with another parent at Special Olympics basketball practice last night and had a nice visit. I've sat with them before, but we don't know each other well and the conversation has always been of the "acquaintance" variety. You know what I mean, how are you, how are your kids, do you have fun plans for the weekend, that sort of thing.

But last night, it became more than that. It became community. A gathering of those with similar stories, sharing and supporting each other. His daughter, a 10 year old with Downs, is a 5th grader at Bambam's school. The kids know each other well and really enjoy each other's company. They spend time together every day at school in the LRC (Learning Resource Center). All the way to SO basketball, Bambam gleefully repeats "M will be there. M is on her way. I will play with M." As soon as the last one arrives at basketball, they run to each other and hug. They clearly are friends. 

But as for us parents, we seem to have kept a small distance. At least until last night. When we began to share stories that only special needs parents have. You know, those of the "pick up your 8 year old who is melting down in the middle of the furniture store and run for the door" sort of variety. The "I yelled at the janitor who made a comment about my kids behavior" kind of stories. The "if the school stops me at pick up one more time to tell me about another behavior mishap I will loose it" kind. The "yes, my 10 year old is still wearing a life vest in the pool, you staring is not making it any easier" sort of thing. The kind that special needs parents experience almost every damn day.

That's not to say that those moments don't occur when raising typical kids. I know they do. I'm raising (or have almost raised) 2 of those also. But its different. It just is. And unless you are raising a special needs child, its hard to really understand how different it is. 

I have great support. Friends, family on both sides, therapists and teachers who are so much more than that. And, I have my sister who is always, ALWAYS there for me. Any time of the day or night she is just a text or phone call away. She will do what ever she can to help me at any time. I know this. I feel this all the way to my bones. She truly loves me and would do anything for me. And I love her to eternity for this. 

But still, as much as she wants to and tries to, she really does not get it. Yes, she always listens as long as I need her to, she never judges, she is always supportive and positive. She sympathizes, and empathizes, and truly tries and wants to understand. I know she does. But how can she? She has never walked a path anywhere near similar to this one. How can she know what its like to have the responsibility of raising a special needs child 24/7. The answer is that she can't. There is no shame or fault in that. That is just the way it is. She does as much for me as she humanly can and I am so grateful and in debt to her for it.

But community, the gathering of those with similar stories, that is what I need sometimes. I cannot go down this road without it. Someone who with just one look can say I get it. I really get it. I've been there. No explanations or excuses needed. In fact, you may not even need to finish the sentence or thought, they could do it for you. They know it, experience it, live it. And I feel myself exhale, relax, feel like I'm coming home.

Progress

We were again at the Fun House last weekend. It is our respite place. The place where we can breath deeply and feel the stress and tension leave our bodies, our minds, our family. A place where we can all just be.

So its natural that in this place we might occasionally stretch Bambam. Pull him out of his comfortable zone and work on situations that are uncomfortable for him. This weekend it was eating out at a restaurant. 

Eating out has not always been an issue for him. In fact, when he was younger (a preschooler) we used to eat out on occasion. We had a favorite pasta restaurant that we would visit maybe once every other month. Eating out has never been a frequent occurrence for us. But he liked the pasta restaurant and usually did very well there. Until the incident.

The last time we ate there, probably 2 or 3 years ago, they sat us back by the open kitchen. This was a new experience. Usually we sat up towards the front windows. As soon as we sat down I could see Bambam's anxiety rising. At that point, I should have asked to be moved. Hind sight is always 20/20. With lots of noise and activity in the kitchen, he was on edge. Then, as soon as we ordered, a flame shot up over the half wall with a loud searing noise. And it was all over. Instant meltdown. He was yelling and flailing and trying to claw his way inside my shirt. There was no calming him down without leaving. So I took him outside while Mr. Fixit changed our orders to go. We haven't been back since. In fact, every time we even drive by Bambam says loundly "No go to noodle restaurant!". Years later. And he has been unwilling to try any other restaurant. Until this past weekend.

We were in town running errands and decided to try lunch at a pub. It was time. We had the iPad, we figured they had wifi and Bambam could entertain himself. So with deep breaths, we ventured in. And wouldn't you know it, they sat us back by the open kitchen! As soon as the hostes left, Bambam looks at the kitchen and then looks at me with fear in his eyes and says "no sit here". Good job self advocating kiddo! So I went back up front, quietly explained that my son is autistic and the kitchen is causing him some anxiety, could we please move up to the front by the windows. They were more than accommodating. Once we sat at our new table, Bambam visibly relaxed. Unfortunately, there was no wifi. But he entertained himself coloring the kids menu and we talked about what he wanted to order for lunch.

Imagine my surprise when our server arrived at our table and asked what Bambam would like for lunch and he answered "pizza." He even answered all the followup questions: What kind, pepperoni; what would you like to drink, apple juice. Unprompted, my son answered questions for a stranger. On topic. With the correct answers. In a stressful environment. We were stunned.

It was a great experience. He didn't actually eat his lunch. At least not at the restaurant. He ate it later back at the fun house. And he did get up and go upstairs to the empty mezzanine several times. But he was not disruptive, he handled his anxiety well, and the rest of us were able to eat a nice lunch. 

Progress. That's what we call it. It may be small, baby steps. But it is still progress. Learning to navigate this big, assaulting world that wasn't made for him. And I revel in each and every one of the baby steps, no matter how small. I surround myself in them, swim in them, soak them in. I hang on to them, pull them out during the difficult times. Always, always reminding myself to NEVER count him out. It is all in his own time, in his own way.