My Side of Typical

My Side of Typical
Showing posts with label support. Show all posts
Showing posts with label support. Show all posts

Wednesday, February 19, 2014

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.

Tuesday, July 9, 2013

The Look

We were back at the fun house this past weekend. And it was First Friday. Which means that downtown is packed with a festive environment of sidewalk musicians, art, vendors, beer and wine tasting, and all the quaint stores are open late. It also means crowds and noise and chaos.

But, since Bambam has been doing so many great things lately, we thought we would try it. First up was pizza by the slice from the hole in the wall pizza joint that we like. Bambam loves their pizza and we usually get it when we go downtown. But its not usually this crowded. As soon as we entered, he stopped in his tracks and grew tense. He had told me right before entering that he needed to use the bathroom. So, even though he said immediately upon entering that he wanted to "go back outside" I made him go use the bathroom first. I barely had his shorts back up before he bolted out the bathroom door and made a beeline outside. No way was he staying or going back inside that crowded place.

On my way chasing him outside, I spotted a mom pushing a special stoller with a 7 or 8 year old girl in it. She caught my eye, she smiled at me as I chased Bambam out the door as he's yelling "go outside now, go outside NOW". And I knew, she knew. She was "our kind". With no words her look and smile encouraged me. She let me know that she understood, I was not alone. We were doing OK. A thousand words and thoughts were exchanged in that silence. And I smiled back hoping to convey to her what she had given me in that brief, silent exchange.