Sunday, January 15, 2017

Friend or Foe, Part Two

I've had a couple of people ask how the bus situation is going, so here is a little update:
I didn't actually get any new information until Friday; Evan reported that on Tues or Wed, he did not see the boy on the bus, and Thursday I picked him up early as he had a really bad headache. On Friday, he got off the bus and told me that the boy, again, said something about his headphones but he wasn't sure what was said or if it was mean or nice.

After some more pointed questions, I was able to clarify that the boy speaks to Evan as he is walking down the isle to get to a seat somewhere behind where Evan sits. This totally cleared up for me the confusion I had when, on Monday, Evan told me that he can't see the boy but knows the boy is speaking to him because "he is looking straight at me and I am looking straight at him" - the boy looks and speaks to him as he walks by, but then Evan can't see him.

In light of this new information, I am not feeling like this is a friendly situation. This boy walks by Evan, repeatedly mentions his headphones and says things like, "do you know what 1+1 is?", and Evan is unsure of and uncomfortable with the situation. Raises some red flags, does it not?

I've asked that the school put an adult on the bus so that Evan can point out this child. Yes, this will draw more attention to Evan, and yes, the boy can spin the situation any way he wants once finally identified and  could say that he is just being friendly. Evan is not a credible witness, and by saying that I hope I shed some light on how difficult it is to protect a child like him against bullying - he is not sure what is being said to him, both because he is wearing headphones and he has a language disorder,  and he does not understand social convention...think about how easy it would be for someone to argue that Evan heard the information wrong and misread social cues. And, maybe he did!

The truth is, I don't know if he's misread any of this, and when I don't know the answer to a situation with him, I treat the problem with a "the glass is half empty" attitude. I have to, because if I don't - if act as if everything is always "fine" - I will never understand what is actually happening in his life. At a bare minimum, what this current incident has told me is, if Evan HAS misread the situation, then we've identified a major gap in his social skills and he needs specific training in this area of his life; this is the best case scenario and comes just in time for me to discuss with the school at his upcoming IEP meeting next week. The worst case scenario, is, of course, that for months this boy has been bullying Evan, in which case I'm incredibly thankful that the headphones and Evan's lack of understanding of social cues has protected him from the brunt of the damage months of bullying can cause.

Let's hope that next week brings continued clarity to this problem and a peaceful resolution for Evan.

Monday, January 9, 2017

Friend or Foe

Friend or foe, how do you know?

When I considered writing this post, I thought it would be at the end of the story. However, after some reflection, it occurred to me that the problem we are currently facing would actually be great in real time so that I could, hopefully, impart some of the challenges we face as they are happening.

Here goes...

Evan got off the bus today and urgently had this conversation with me (it is the approximate dialogue):
Evan: Mom, there is a boy on the bus and he keeps talking to me and making noises and I don't know what he is saying, except one time he asked me what is 1 + 1 but I don't talk to him because I don't know him except I did answer what is 1 + 1.
Me: What kind of noises is he making?
Evan: I don't know, but he talks too but I don't know what he is saying.
Me: How do you know he is talking to you?
Evan: Well, he is looking at me and I am looking back at him.
Me: Do you think he is being mean or do you think he is trying to be your friend.
Evan: I don't know.
Me: Is he an older boy or is he from your school?
Evan: He is a bigger kid. I didn't tell you because I tried to wait another day so that I could figure out what he was saying but I still couldn't figure it out.

Now, let me put in some additional context...we started this conversation with Evan standing outside of my car. He wanted to start talking before he got in, and so he stood at my window in 15 degree weather and kept talking. I wish I could capture his tone, but his voice rose during the "but I don't KNOW him" part, and his speech was rushed and a bit worried sounding. This is what prompted me to ask if Evan thought the boy was being mean or being a friend, and the "I don't know" answer was enough to convince me that I think Evan might be worried that this boy is, in fact, being mean but that he is unsure about it.

Evan rides the bus with his sister, and they sit together in the morning. In the afternoon they have a different driver and the kids are seated by grade, so Shayna does not sit near him and has no knowledge of any situation on the bus.

Getting additional information out of Evan is extremely difficult. Here is part of a later conversation:
Me: Evan, does the boy sit behind you?
Evan: Yes.
Me: Can you see him?
Evan: No.
Me: How do you know he is talking to you?
Evan: It's pretty obvious because he is looking at me and I am looking at him.

Hmm....o.k....

Me: Do any of the friends that you sit with hear him?
Evan: Well, I guess.
Me: Who do you sit with? Do you think they could help us figure out what the boy is saying?
Evan: Well, I mostly sit with girls and they are busy doing their own thing.

Shayna added that when she gets on the bus in the afternoon and walks by him, he is never interacting with any peers.

Me: Evan, has the boy been talking to you for a long time or a short time?
Evan: Umm...
Me: Did he start talking to you before Christmas?
Evan: Yes, before Christmas.
Me: Did it happen before Thanksgiving?
Evan: Yes, before Thanksgiving.
Me: Before Halloween?
Evan: Yes, before Halloween.
Me: So this has been  happening for a long time?
Evan: Yes.

So, here are the two scenarios that I am dealing with: 1.) this boy is actually trying to be Evan's friend but Evan's social skills are not generalizing to this situation and he is not sure what to do, and that is causing him anxiety, OR 2.) this boy is bullying him and Evan is not really understanding what the boy is doing or saying and that is causing him anxiety. Either way, he knows enough to be uncomfortable with the situation. In the best case scenario, we've identified a significant gap in his social skills and specific social training needs to be started to address friendship building on the bus with older kids. However, Evan has never had a problem being a friend with an older child that shows him genuine interest and who doesn't mind carrying the conversation or play.

The worst case scenario, though, is that Evan is being bullied and that other kids are allowing it to happen. This, of course, is what has me worried.

What do we do now? Several emails have already been sent to the school personnel outlining the conversation I had with Evan and my concerns. The difficult part is getting accurate information; if asked the correct way, I think we can get good information out of Evan, but getting the real time feel for what is actually happening on the bus is going to be very difficult. My first line of defense is to put Shayna into PI mode and have her gather as much intel as she can. I have specifically asked her to keep her eyes on Evan and his surrounding seat mates tomorrow as best she can. The school will also start poking around on their end to see if they can get any additional information.

I hope I've captured some of the struggle that is happening here. We've got a child with language disorder that doesn't understand social norms and we've somehow got to figure out how to piece this puzzle together and help him. This struggle is not new, it's just in a different environment than we've encountered before. The day is coming when Evan will face tried and true bullying. Is that day here? Ugh, I hope not. I really, really hope not. I'm incredibly thankful for the language he does have, and for trusting his gut enough to (finally) tell me that something is off...the clock is ticking, though, because if I don't help him in a timely and effective manner then the takeaway for him might be that telling me doesn't make any difference.

Stay tuned for how this plays out...




Sunday, January 8, 2017

Compassion: Lily's Perspective

Lily recently entered, and won, a school writing contest and with her permission, I am sharing it here. I'm going to keep my thoughts out of this blog, though after you read her words you will probably understand that I have both a lot, and nothing, to write. I'm choosing nothing so that her powerful voice can speak for itself.

Grab you hankies...

We were sitting at the table. I had no idea what was I was about to be told. Something that would change my life, maybe for the worse, maybe for the better. It’s all about perspective. That day I learned that my little brother has autism, a neurological disorder that affects the way a person learns. I feel compassion for  my brother.
My brother Evan has gone through a lot. Although he has never needed surgery or anything like that he has gone through many hours of therapy, which he hates with a passion. My heart reaches out to Evan. He has to do hours of therapy he hates just to live a  normal life. He will always be effected by something he does not deserve and cannot help.
There are many things I can do to help Evan. I have taken on the project of selling puzzle piece shaped crayons to raise money for autism. I feel like Evan’s life could be improved. Although he does not suffer, many things could make his life easier. I help fund research to help Evan find relief from some struggles. Other ways I help my brother are raising awareness among both children and adults and wearing an autism pin every day to show my support.
Although the dictionary defines compassion as “a feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering” I believe that compassion is really the feeling of great sympathy towards others accompanied by the desire to give them a better quality of life. My brother does not suffer but I do everything in my power to make life easier for him. Your compassion that you feel towards another is a feeling that cuts deep into your soul and makes you feel like something must be done. Its an emotion that sparks protectiveness and possessiveness when it is felt deeply. Not deeply like a wounded animal, deeply like a loved one.
Four years ago I was sitting at a table not fully understanding what was going on. Now I have a burning desire to help my brother. I would trade places with him in a heartbeat to give him an easier life. That is the true meaning of compassion.   
-Lily



"If you ever wonder how to treat a child with autism, look at their siblings. They will show you."