As I was getting ready for church this morning I began to have an uneasy feeling in my stomach that something bad was going to happen.  I don’t get these very often, but when I do I am rarely wrong.  The feeling grew.  Then as I walked down the steps I heard my almost 4-year-old say out of the blue, “I don’t like Mommy anymore.” 

I was stopped dead in my tracks.  Did I hear that right?  “What did you say?”  He repeated it AGAIN.  “WHY?”  I asked.  “Because you make loud sounds,” he replied, and my heart broke into a million pieces.

By “loud sounds” my son means yelling.  Yep.  Sometimes I yell.  I don’t want to.  But sometimes I get so tired and frustrated and I just, just… GAAHHH!  I hate it when I get like that.  (See The Mom I Do Not Want to Be)  And now to see that it has changed my son’s opinion of me makes me feel awful.  Truly awful.  I went to church with a sinking heart, eager for wisdom and comfort.

I wish I could say that the day got better from there.

Remember, I was already in a fragile state when I got to church.  When I went to get my sons’ nametags off the wall I noticed that there was a pink sticker at the bottom of Thomas’s, saying “Peanut Allergy” (although he is no longer allergic).  We had not been to Sunday services since they switched to a new security and nametag system earlier this month.  And then I found Percy’s tag.

At the bottom of my beautiful, bright, & loving son’s nametag there was also a pink sticker… 

My son’s sticker said — Autistic

I could not breathe.  I could not see.  I snatched it off the wall and held it, crying.  My husband saw it and made a disapproving noise.  Luckily it was the early service AND we were late so there was really no one around.  I walked straight to the information desk and interrupted the preschool minister, tears in my eyes, and thrust the nametag at her with shaking hands, asking, “Is THIS the best way?”

To her credit, she handled the situation well.  She was sorry that it upset me and said something like, “We can work with this.  I am open to suggestions.  How else should we get the information to all his teachers?”  

I responded, “I don’t know, but this… it’s like he is wearing a SIGN!” 

She made the point that the fact that he had a pink sticker would not stick out because there were LOTS of pink stickers, but I was still uneasy.  After a few minutes I calmed down and told her we would talk later.

I was hesitant to share this here because I really love my church.  They have a reputation for being accommodating and welcoming and understanding to children with special needs.  And this minister in particular is sharp and organized and “gets it”.  But in this case I think they missed the mark.

I admit, I have been frustrated that SO many Sundays I have had to brief a new teacher/volunteer on Percy’s behavior.  The church has a hard time filling the regular spots and there often seems to be someone new working with the kids.  I have wondered the best way to tell them.  But I do not think THIS is the best way.  And it is not because I am ashamed that he has autism.  I tell a lot of people about it.  But I don’t want him walking around WEARING it, like it defines him.  And I don’t want it hanging on the wall with all the other nametags for all the parents to see.  And by the way, my son’s was the only one that said AUTISM.   

I made it through worship and headed to Sunday School, all the time fighting back tears and nausea.  Remember my Vacation Bible School buddy, Gus?  I pulled Gus’s Mom  aside in Sunday School and told her the situation.  (she has reached out to me from the first day we met)  She was HORRIFIED.  She said that there was NO WAY she would let her child wear that nametag, and that she thinks only the lead teacher needed to know.  She said I should have the right to tell WHO I want, WHEN I want.  ”You don’t know how people will respond to it.  Some parents may have a hard time with their child being around Percy.  You heard about that Michael Savage thing?  Well a lot of people out there feel that way and really think those things!”  She also said, from her perspective as an educator in the public school system, that labeling a child can affect how others treat him.  They may be more quick to view him as difficult, or they may not try as hard with him or be as patient. 

We talked for a bit longer and she was such a comfort.  She has offered to help me talk with the staff and work out a better solution to the situation.  How DO we distribute the necessary information and make sure all the teachers & volunteers know?  Honestly, they don’t have time to read an info sheet every week.  And does EVERY worker in the room need to know, or just the lead teacher?  I really would appreciate your feedback & suggestions here.  This is a tough situation for me. 

On a positive note, Gus still remembers me and calls me his “Power Lab Teacher”.  He actually dragged his Aunt, and then also his Grandmother, over to meet me, grinning from ear to ear.  He is my buddy.

When I picked Percy up from Sunday School I took the nametag home with me.  I just now peeled off the bright pink label.  He will never wear it again.

UPDATE 9/28/2008:

I am happy to inform you that the situation was handled swiftly and compassionately.  The staff decided on a sticker that said “See Information Sheet” so that private information is not on his nametag, but the teacher will still know the important information. I was also asked to provide guidelines for the teachers so they know how to handle any situation that may arise (meltdowns, etc).  That means that they care enough about my son to want to know how best to help him feel comfortable! =)

Part of what happened is the staff had worked very hard recently to implement a new security system and was thinking in terms of  INFORMATION.   The “autistic” sticker made no difference to them because there were a lot of other kinds of pink stickers AND these people have never seen my child as broken, just as “Percy”.  They have always been very welcoming, loving,  and accepting of him.  When they realized why the situation bothered me they then saw the sticker from a new point of view.  They were so very sorry that it was hurtful and thanked me for working with them to find a new solution.

Part of me wanted to change this post to private because I didn’t want to seem like I was slamming my church. I don’t want to turn anyone off from trying to attend any church. I decided to  leave it up in order to illustrate the challenges any organization faces when attempting to be inclusive.  And my church tries VERY hard to be inclusive, and is compassionate, and in this ONE instance there was a hiccup.  BUT they fixed it.  I am very pleased with how they handled it.  Just because there was this one struggle doesn’t mean that my church doesn’t care.  It just means they are trying to work it out just like the rest of us.  At least they are trying!!!