I’m sure you have heard the phrase “It takes a village to raise a child.” This is even more true when you have a child with autism or any special need. Villages are hard to find when people are intimidated or scared of your child, of your life. Add to that the fact that trusting people around your child is so hard and families like ours often feel alone and isolated.
I don’t purposely limit our “village” but I also don’t let people in easily. Casey and Rob (and Mandy and I!) have been hurt too often. Even when I know someone would never hurt them, it’s still hard to let people see our “real” lives. Reading about it here is one thing. To actually be in it? That’s a whole different ballgame. Maybe I just don’t want to see the look on their face when Rob starts getting loud or Casey gets upset over some little detail.
It’s easier to keep us closed off.
It’s not better for us – I do know that. I know they need to try new things and meet new people. I know that the best way to spread autism awareness is to be out in the community and let people see the real us. But – it’s hard.
Last week, I was shown, again, that being open to new “villagers” can be amazing. I have known Susie and Gene for years and years – even before Susie moved next door to us. Since our houses are close, I know she has heard my circus – the yells and meltdowns and everything else. But – I don’t have to see her hear it, if that makes sense. I don’t have to see the look on her face. I can just apologize later.
So, they aren’t strangers, but it was still hard to think about spending an afternoon at a lake with them. Susie and Gene have a boat and an inflatable ride-on to pull behind it. I wanted the kids to have something new and exciting this summer, since we had to cancel so many things.
But…. What if Rob started his anxiety song? What if Casey got upset? I didn’t want to ruin their afternoon. I was excited to go, but at the same time, I thought about canceling several times.
I worried for nothing. Casey and Rob loved it! When it took Casey several tries to be brave enough to step onto the inflatable, it was no big deal. They were patient and kind. When Rob tossed a towel (and later, a bucket) overboard, they laughed and said it was no big deal. I was embarassed and was ready to just go home. (Actually, had we not been in the middle of the lake, I probably would have!)
The afternoon was amazing. Not only because it was a beautiful day to be on the lake, but because I could relax and let the kids be who they are without worrying. I’m not sure Susie and Gene really understand what they did for us that day. It is more than just taking us to the lake. It was acceptance and caring. As you know, that doesn’t happen often! Our “village” grew that day.
Autism families need support and it’s hard to find. Yes, we need doctors, therapists, teachers – but we need friends just as much, if not more. We need those people who happily invite our family to their events and assure us everyone is welcome.
We need the far away friends who text, just to say hi and make us laugh. We need friends who aren’t autism parents to include us and cheer with us when our kids reach a milestone. We need shoulders to cry on and friends to lean on when life just gets too tough.
We need the support of our families (so many don’t have this and it’s so sad!). We need staff we can trust who love our kids. We need people to understand why we turn down invitations, sometimes, but who will still invite us. We need acceptance.
We need our village. And we need to let more people into our village – to love us and our kids.