Monday, April 27, 2015

Fail With a Capital F

Dear Church That We Have Been Attending:

We have been tag team attending church. One of us stays home with the teen w/ autism while the other goes to church. You should have noticed that the teen w/ autism hasn't been there lately.

Big Sis was part of senior recognition Sunday. The high school seniors are preparing to graduate. You make that day very special for the graduates. You recognized them in every service, you created a beautiful brochure featuring each student, you honored them with a luncheon. Nice.

But you failed with a capital F.


Siblings of kids with autism often get the short end of the stick. They do without. Often. My graduating senior told me not to sign up for the event. She didn't want to be there with just one parent while everyone else had entire families there. She said it was too hard for her. My heart broke. So I did everything I could to get all of us there. And you didn't make it easy.

When you minister to a family that includes a child on the autism spectrum, your radar should be high. "What can we do to make it so you entire family can attend this event?" should be asked early and often.

You didn't ask.

When I asked for a sitter during the luncheon, you said "NO." Why? You offer sitters during other luncheons. Why not this one? Are some families more deserving than others in your eyes? I went around staff to another parent of a senior, also an autism mom, who has been there longer, who knows the people there. She found yet another autism mom to hang out with my child - and that adult is also an autism mom. Autism moms taking care of one another. Why is no one else helping? Why no child care for us?

I tried to ask about the food served at the meal. I was given terse, short emails in return with not enough information. "Stuffed chicken, vegetables, salad, fruit, rolls, dessert" is not enough information to a family in our difficult situation. Going anywhere with food is challenging. You could have made it easier. The harder I tried to get information, the more put-off I felt. On the day of the luncheon, I was surprised to arrive and see NUTS in both the green beans AND the salad after I mentioned our long list of allergens. How dangerous to serve nuts at church.

Thank you for ultimately offering to bake the gluten free dairy free everything free chicken nuggets I brought.  However, getting there was way too difficult. You offered to bake a plain chicken quarter w a gluten free seasoning for her - except she is much more than gluten free and I needed to see all the ingredients. Additionally, I am not sure she would eat your chicken quarter and I needed her to actually EAT. My kid is more regulated when she is not hungry. We would have a higher chance of getting through the event if she has actually eaten. That's why I wanted to bring something I knew she would eat.

I felt as if I were pushing to try to get answers, that I was irritating the church staff, so I stopped. I backed off. And I should not have.

I was royally disappointed to arrive to find we'd been assigned to the table in second row in the middle of the room. A table on the edge near the back would have been better. You put my kid w autism up front for everyone to see if she was having a rough moment, and you crowded people around her. We arrived early, found our table, sat down - and when the last worship service ended and people began filling in the tables around us, my kid began to recite movie lines, began to screech, a sign of her anxiety. Thank goodness that Mama Catherine was standing by ready to hang out with my girl in another room so that the rest of the family could stay together for the luncheon honoring the seniors. However, I would have loved to have done everything I could to try to maximize the moment so my girl could have lasted longer in the luncheon.

The events were lovely, especially the luncheon. Thank you. For that, I am grateful. I am grateful for all of the volunteers who have worked with the youth in the four years since we moved here.

In the end, everything worked out, but with much stress for me, stress that didn't have to happen had you only asked the question, and meant it, "What do we need to do for your whole family to attend together? What can we do to make that happen?"

I hope this post isn't seen as a passive aggressive attempt to air my frustration. I write this for other churches who may be searching the internet for how to help a child with autism in a church setting. I don't think you would hear me. You didn't hear me as I was trying to plan for the event. And the search for a church for the whole family continues.
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