Doing Typical Activities with Your Non-Typical Child in Your Community

Something has been ruminating in my mind for some days now, ever since our last family visit to our temple.

The amount of effort and emotional endurance that goes into taking your special little one to a typical function, gathering, activity, is a lot. For example, taking my child, who is wheelchair bound with cerebral palsy, to our local temple is an effort. Not only do I have to make sure I have everything to meet all her needs, preparing her for the overstimulation and having things handy to de-stress, feed, and keep her cool, just to name a few. I have to also prepare myself for the ordeal of maneuvering her wheelchair around shoes, people, objects etc. On days where the temple is so full of people I can barely get her in and out, I wonder at my need to include her.

But there is a need. A need and a want to include her in typical activities, I want her to be a part of our community, our community needs to know her and accept her, I feel it’s important for both us and them.

However, it’s almost never a satisfying experience. I won’t be a negative Nelly and say I have never had a successful experience. The truth is, we have wonderful friends and they make sure we are assisted and welcomed wherever we go. No, I’m talking about the greater community.
I would like to preface my explanation with this: we are not needy parents, we try our hardest to meet our child’s needs without imposing on someone else. We are strong and resourceful , we only ask our closest friends for help and often they know us enough to know that we won’t ask for help, so they simply anticipate our or our daughter’s needs. We are blessed and fully appreciate their love and support.

When I say community, I speak more of acquaintances, or perfect strangers who see us from time to time in the temple setting. I would like to share with them my heart.

My daughter is in a wheelchair and might seem to not be paying attention to what’s going on, so maybe you feel she doesn’t need to be in the temple, taking up space, or up front to have a good view, but she does. You see, she is over-stimulated by the noise and crowd, but she is aware, seeing and hearing everything. She is absorbing as much as you are and when you disregard her by asking me to move her out of your way, so you have a better spot, you are both breaking my heart and telling her she is not equal to you. But she is. She is a spirit soul, just like you, just like me. Her body might be broken, but we are not our bodies. Her mind and her intelligence are there, she is seeing how she is treated and that is molding my daughter’s perception of herself and how she can expect the world to treat her. Just like any other mother, I want to raise my daughter to be strong and confident. I want her to know she is valued, she is lovable and that she can reach for her dreams, despite her limitations.

So this is a request to you , her village so to speak, please allow her to be a part of this temple community.

This doesn’t mean you have to rush to help us, this doesn’t mean you have to give us priority. It simply means, please give us respect, allow her to have space to join in. Please don’t bump into her wheelchair as though she were a piece of furniture. Please don’t stare at her and then look at me with pity, we are proud of our daughter and her accomplishments. Please DON’T leave your shoes in the doorways and hallways where we have to fight to simply get her in the temple. Please DO say hello and smile at her. Please DO remember that she might not know you, and like any child will not smile back. And most of all please DO remember she needs her relationship with God just like you and I, please allow her to see the Deities, allow her to help in service, please don’t disregard her right to be there.

Thank you, Hare Krishna