Wednesday, July 2, 2014

In case you were wondering...

In case you were wondering, if you happen to be in a public place and you encounter a person with a disability, it is not good manners to blatantly stare at them, regardless of your age.  If you notice your child staring rudely, perhaps you could muster up a little courage to parent them, and set an example of how to behave when a person who might be "different" has entered the room. 

In case you were wondering, some acceptable next moves when you notice your child (or yourself) gawking is maybe to just say hi. Maybe ask the person's name, how they are doing...the usual stuff. Children will not learn how to treat others appropriately if their parents and the other adults they look up to do not show them how to.

In case you were wondering, if you happen to encounter a child with a disability out in the community and you notice that they are having some difficulties, again it is not helpful, kind, or polite to just stand oggling  them as if they are an attraction at the zoo. In case you were wondering, it would be absolutely okay to ask if they need anything. Again, and today I feel like I just can't say this enough, if you do not choose to offer any assistance or kind words, the next best thing is to NOT just stare at the child and her poor Momma who is just trying to take her child out to story time at the library without feeling like they are on display. Just go back to what you were doing and discreetly encourage your children to do the same.

In case you were wondering, Lu and I had a tough time at the library today. We haven't made it to story time much lately because she has been crying a lot and when we got there today, on time even, she started to cry. We still went in to get situated and get her Tobii set up because she wasn't doing much more than just fussing a little at first. I thought maybe she would get interested once story time actually began.  Unfortunately, as we waited for the librarian to come in, she just got more and more upset.  She may have felt uncomfortable about the ten or so children and their caretakers who stopped what they were doing as we came in and, you guessed it, just stared at us. I sure did. I made many attempts to engage the children closest to Lu in order to break the tension a little and maybe help Lu to feel better, but nobody would talk to us and not one single parent made any attempt to help. Not one single parent tried to assist their child in interacting with us, and not one single parent discreetly (or otherwise) corrected their child for gawking at us. 

In case you were wondering, it's situations like this that make me not want to leave the house ever. What in the hell is wrong with people? I talk to Lucy all of the time about good and bad ways to treat others.  We talk about all of the differences there are among people in the world and how it is okay and good for people to be different.  And that everybody is different in some way.  Because of past times of people staring we have talked about how rude it is. So, she was already feeling upset about something and then her so-called peers made her feel even more uncomfortable. 

I did my best to smile and stay positive. I did my best to help Lucy calm down and prepare to enjoy story time.  Nothing helped.  We left before the story even began. She cried half of the way home, and then was okay. When we got home I asked her if something hurt and she said no. I asked her if she liked going to story time and she said no.  I asked her if she had been feeling nervous and she said yes. She even seemed a little scared when we got into the elevator, which is unusual because she has ridden in plenty of elevators, including the library's and it has never bothered her.  It seems like a possibility that her anxiety is increasing, which is a very common symptom with Rett Syndrome. 

In case you were wondering, I'm totally pissed, and broken-hearted. It breaks my heart that people can be so stupid to each other.  And it pisses me off.  And it enrages me that Rett Syndrome might be reinforcing the obstacle of anxiety that we already deal with on a mild level.  Isn't it enough that I have to worry that Lu is going to cry whenever we go somewhere without also needing to worry about how others are going to react to her? 

Society is stupid, people are rude and inconsiderate a lot of the time, and home is the safest place to be some days. Yeah, I wish I were a hermit and that it was acceptable to be case you were wondering.

Chad sent this to me one day when I was out getting groceries because she was upset.  This is her standard upset, about to cry face.  This is what she looked like at the library today.  How could people not feel compelled to at least be thoughtful enough to give us a little space and  Let's teach our children kindness, and lead by example. 


  1. I am on a similar journey with my Lily. Our girls are amazing. And that sweet Lu, even when upset, is so beautiful. I wish I could give you both a hug.

    1. Thanks so much! We would gladly accept a hug. I love it when other parents leave comments, it just makes me feel so much less alone. Take care and thanks for reading!