Tuesday, July 12, 2016

Just Call Me Dory

A year ago, if you told me that I would voluntarily take Red to a movie, just the two of us, I would have laughed in your face. I imagine it would be hard for most mothers to admit publicly that they do not enjoy the company of their own child. However, a year ago, I did not..at.all. In fact, I tried to avoid him whenever possible, which wasn’t often enough. At times it felt like he was purposefully trying to drive me crazy. He was borderline abusive to me (mentally). That was because he was going crazy and he wanted company. 

Cut to this Sunday afternoon, I texted him and asked him would he like to go see “Finding Dory” with me.  I was tentatively expecting a rejection. I knew he wanted to see me as he usually does on Sunday, but I thought the idea of an animated film which was my suggestion, would be met with his usual opposition. Surprisingly, he said, “Sure.” 

I picked him up from his house. We went to the mall to get a new phone case for his iPhone. We also looked at a few things for me, as he very loudly shared his philosophy about why he needs to get married young, while he "still looks this good because it’s important to look good in that suit when you get married.” And I guess when you take the suit off on the wedding night. Because that ladies and gentleman, is what love and finding the right wife is all about …how you look! There was a lady in the women’s department who laughed out loud every time we got near her. I do believe she was laughing at us, not with us, because he was so dead serious. 

When we finished at the mall, off to the theatre we went. Now, in the car he was his usual annoying self, talking about bodybuilding, diet and working out, non-stop. He repeated the same sentences and questions that I had already heard a hundred times this week over the phone. Once we reached the dine-in theatre I told him, all conversation is over. There would be no talking during the movie. He agreed. 

We watched the movie quietly together. We laughed out loud. I tried not to cry. He followed the storyline without asking any questions or narrating like he used to at home when we would watch a movie together. He wasn’t rigid about what he ordered to eat because of his healthy diet. He had a burger, with no fries, but opted for their delicious homestyle popcorn. He was totally socially appropriate. There was no complaining. It was refreshing. It felt so good to enjoy his company. 

When I got home, I reflected on our time together as I climbed into bed. I think one of the reasons that there was no conflict, is because it was just the two of us. He didn’t have to compete for my attention with his brothers or his father. Blue wasn’t there to give him a hard time about his repetitive dialog. His father wasn’t there to be all “fatherly.” We just had a good time. He enjoyed the fact that it was all about him. 

Now, in the past, the fact that it was just the two of us has not stopped him from going off the deep end. There is probably a combination of factors that came into play. The biggest one I think, is that he is finally growing up. 

By the way, I think my new nickname should be Dory. She has short-term memory loss, as do I (thanks to my kids and menopause) but in her own goofy way, she manages to get through the challenges in her life. There is no rhyme or reason to her methodology, she just keeps swimming and somehow, it just works. 

Thursday, July 7, 2016

Dear America

This was originally posted in July of 2016. It's still relevant today.

“Did you hear about those black men being shot? It could be one of us next!”
Before I opened my eyes this morning, this was a group text message that Red sent to our immediate family, including both of his brothers.
Blue's response?
"Dude. Calm down." 

After sending the message,  there was an eight a.m. phone call.  I didn't answer so he called his brother. Blue comes into my room, "Will you please talk to him? He's freaking out!"
I attempt to wake myself up as I dial Red's number.
“I'm trying to figure this out," he says. "Does this only happen in certain areas where people are poor or could this happen in our neighborhood to my brother, or me?” 

Can you hear the fear?

Can this happen to us just because we are black?

Here we are again America. I really just can't with you. Black men are being executed by the police without a trial or charges. Two murders were captured on video, uncut, unedited for public viewing on social media outlets over the past two days.  I have refused to watch either video.  I don’t know all of the gory details about the individual incidents.  I don't want the graphic images playing over again in my head, 

I don't know everything that happened. There will be much dispute over the coming days I'm sure.  I do know that black lives were taken. There are children who no longer have a father.  There is a wife who no longer has a husband. A girlfriend watched her partner being shot four times, after a traffic stop, as her child watched from the backseat of the vehicle. And my law-abiding sons are scared! 

I have not watched the videos. However, I have not been able to avoid all of the outrage and commentaries on social media.  I can not completely hide from it.  I can not shield my sons from it. 

What is happening isn’t something new.  My husband and I have had the "what you do when you interact with police," conversation with our sons countless times before.

I wrote about this issue in a blog post after the Trayvon Martin murder.  I wrote about the compounded fear that I have because two out of three of my black sons also have a hidden disability -autism, which impairs their social-communication skills.

Yesterday, I met Red at the bank to straighten out an ordeal with his checking account. I won’t get into the details, let’s just say it involved him using his account to pay for something on PayPal and some subsequent unauthorized charges.  As we’re talking to the clerk at the bank and she is trying to help us. He repeatedly talks over the sound of her voice, not listening to what she is trying to say to help us. As she works the transaction on her computer, he begins talking to me loudly, about issues of a personal in nature that everyone in the bank doesn’t need to hear. I try to get him to quiet down. I ask him to stop talking until we are finished transacting our business. He clearly does not understand when he should be talking, when to be quiet, and when to listen to important instructions that will ultimately help him solve his problem. 

I thought of this interaction last night before I closed my eyes after I heard about the first shooting.
Would he understand an officer’s directions in a tense situation? 
Would he be too busy talking instead of listening?
Would his actions be seen as defiance before any questions were even asked, or before he could convey that he has autism and difficulty with communication?

Here in Texas, his driving permit has a notation that he may have some impairment in communication.

Will he have the opportunity to present his license before a nervous police officer would shoot because of his preconceived fear or even hatred of my son’s race? 

Red has had several interactions with law enforcement in our community. Thus far, the interactions have had a positive outcome. Yes …his anger has gotten out of control, in public. He has dealt with officers on the campus of his middle school and high school. He has even had interactions with them here in our home when his anger got the best of him.  Each officer appeared to be trained in de-escalation.

Red has always been savvy enough to tell the officer that he is speaking with that he knows and is “friends with” a number of officers in our local police department.  He knows them all by name and drops those names in a hot minute!  (“Keep your friends close and your enemies even closer.”)  He has several of the officer's business cards. One officer would even drop by our house periodically just to have a chat with him and see how he’s doing.   

So this morning when he asked me should he be afraid. "Are the officers in our area better trained than the ones who have been killing those black men?"  I told him yes.  I lied. I hoped. I made light of my fear so that I would not increase his anxiety.

I try to be optimistic. I try not to play into our fears too much. We have to face them. We can’t hide here at home. We have to go out into the world.  We can’t afford to overreact in our interactions with law enforcement.

So once again today, we talk about what to do,  if you are stopped and approached by law enforcement.  
  • Listen carefully. 
  • Follow the officer's instructions. 
  • Say as little as possible.  
  • Be respectful. 
  • Do not argue.  Yeah right. The very definition of Aspergers is arguing. A girl has to pray on this one!
  • Keep your hands where they can be seen at all times. 
  • Do not reach for anything, including your identification until you have been instructed and given permission to do so. 
Now, will Red be able to follow these directions? I have no idea. Frankly, I would be surprised if he does.

Intellectually, Blue seems to understand these concepts, but under extreme anxiety, what will be his reaction? Will his facial expressions be appropriate? I don't know for sure.

Where I have fear, I can only hope that the presence of an officer and a gun will help them remember our conversations.  I pray that they will remember the images of so many of us who have been taken away far too soon.

Tuesday, July 5, 2016

Shaken, Not Deterred

Guest Post by -Leo Zanchettin Jr.  of Autism Blues 

See that picture? That’s my wife and my daughter (15) taking a walk. Oh, and our dog, Roxie. Do you know why I’m posting this picture? Not because I love these two (which, of course, I do), but because of how proud I am of my little girl. The fact that she is out on a walk shows how courageous she is.

You see, about four weeks ago, my daughter had a seizure. It was her first. Not a little tremor—a grand mal. You know, the kind where you’ve fallen to the floor convulsing, with your eyes wide open but seeing nothing. The kind where you can’t remember anything about it. The kind where you wake up as the paramedics are gently placing you on a stretcher and wheeling you into an ambulance. Terrifying stuff.

Then, ten days later, she had another one. The first one was in our house, but this one was out in public, at a food court. Again, it was a grand mal, and it lasted longer than the first one. Fortunately, I was there with her, so I knew to roll her onto her side, cradle her head, and wait it out. Again, she woke up, disoriented, to emergency personnel hovering around her.

So what does this have to do with the picture up there? Everything. 

Overcoming “What If.”

Events like these would be traumatic for any adolescent girl; they can be positively paralyzing for a girl with ASD and anxiety disorder. The randomness of the seizures, the lack of memory, the waking up surrounded by strangers—it’s all so upsetting. The largest question that looms in her mind now is “What if?” What if I have another one? What if Mom and Dad aren’t around? What if it happens in front of my friends?

She’s on anticonvulsants now, and she hasn’t had a seizure in two weeks, but that doesn’t matter. The anxiety is so big, and the autistic tendency to perseverate is so strong, that the mere possibility of another event has kept her pretty much homebound ever since. She even missed an appointment with her counselor, whom she really likes.

Now do you see why this picture is so precious to me? Katie and I have convinced her that she needs to start getting out. We’re starting slowly, having her join us as we walk the dog in the mornings. And she’s doing it! She’s walking, she’s talking about everyday stuff, and she’s not perseverating over the seizures. 

(The walking stick? That’s because she has mild scoliosis, and it helps her posture.)

Different Drums.

Now take a look at this picture:

Do you see that plush doll in her right hand? That’s Phantump, one of her favorite Pokémon characters. She is rarely separated from this creature, and when she is, she’s holding another one of the more than 100 she has collected over the years. They are her security blanket. They bring her comfort. They help her bridge the gap between the fantasy world she so enjoys and the real world, which is fraught with challenges and dangers.

So there’s my daughter, out in public with a walking stick and a plush Pokémon. While most girls her age are swooning over boys, preparing for their learner’s permit, and paying close attention to their appearance, here is my girl, walking to the beat of her own drum. She’s fighting her fears. She’s facing down her anxieties. She’s pushing through some things no fifteen-year-old should have to face. And she’s still standing.

There was a time when I’d object to the plush doll. “You’re a young woman now. For God’s sake, leave that thing behind!” There was a time when I’d try to force her to push through her fears more quickly than she was ready to do—usually to disastrous results. There was a time when I knew pretty much what I wanted her (and all my kids) to be, without paying too close attention to her unique personality. But if walking this autism path with my kids has taught me anything, it’s to throw away all of my expectations and to not care about how other people look at them. Those concerns were more about me than the kids, anyway. 

So march on, girl! I don’t care if you need to take five Pokémon with you. I don’t care if you choose one of the most ornate, obvious, obnoxious walking sticks possible. Do whatever you need to do. Just keep moving forward. Today, it’s a walk with Mom, Dad, and Roxie. Next Sunday, it may be joining the whole family at Mass. Or maybe not. It doesn’t matter. Take it one step at a time, and we’ll be right there with you.

These pictures, and this story, have been posted with the kind permission of my daughter (and, of course, my beautiful wife, Katie).

Leo is one of my favorite autism dads. He also runs a blog and a Facebook Community called "Autism Blues"

Leo and his wife Katie live in Maryland with their six children, ages 7 to 16, all of whom are on the autism spectrum.  Yes. You read that right! Six children on the spectrum! I am truly inspired by their humor and grace as they parent their six children.