Sunday, June 8, 2014

Spying Neighbors and T-Shirts About Autism

Yesterday, my husband took Lilli for a walk around the block. Well, technically, he took her for a ride in the oversized-for-kids-with-special-needs-jogging-stroller first, and then towards the end of the run, he took her out of the stroller to walk her and have her get some exercise.

Jasen loves to exercise, and he loves taking our kids. I love that Jasen encourages our kids to exercise. Lilli would prefer to sit on the floor all day long and watch movies. But kids need sunlight, fresh air, and exercise, and Jasen is determined to get them all outside as much as possible. I credit Jasen the most for helping Lilli to learn to walk and run. He has been a loving, encouraging dad to her for her whole life. He comes home on his lunch break and takes Lilli out to walk or ride in the jogging stroller almost every single day. No matter the weather, he bundles her up. or gives her lots of water, and they go. Even if it is just for a few minutes. The other day they walked together down the street in the drizzling rain, and Lilli loved it. Jasen has always taken Lilli out in a jogging stroller, since she was a baby. Years ago, he put toddler-Lilli and baby Chloe in a double stroller, and he would run around the block pushing that. Our neighbors all knew who he was in that neighborhood. That's the dad who runs with his kids in that double stroller. 

This new area we live in is more like a grid of streets, and we live on the main road with blocks of residential area all behind us. We know the immediate neighbors around us, and a few down the street. But we do not know everyone. I often look up at the windows of the houses we pass as I walk Lilli, and wonder if they see us and know about Lilli. I will explain why in a minute.

Half an hour before the walk with Lilli, he had taken the other two kids out in the bike trailer for a ride around the neighborhood. I found that bike trailer for him at a yard sale a few years ago, and gave it to him for Father's Day. It was one of the best gifts I have ever given him, because that is the kind of dad Jasen is. He works hard, but he spends all of his down time with his family. We are a team. He is my best and favorite helper in life. I am so blessed to have a great husband, and even more blessed that he is a wonderful father to our children.
Always, always been a Daddy's girl. From
the very beginning.

I begin this post in this way not to brag about my husband, but to tell you what kind of dad he is, if you don't know him. Because something disturbing happened at the end of Jasen's walk with Lilli yesterday. I guess it was on my mind enough that has me up writing about it now, at four in the morning.

While Jasen was out with Lilli, I was sitting on the porch swing having a rare moment to myself. I was feeling big and pregnant, a cross between nauseous and tired, and I was drinking a smoothie while staring out at the trees across the road. Inside the house, through the closed window and porch door, I could hear a faint, "Mom! Mom! Mom! MOM! MOM!!! Mom? Mom?? MOM???? MOOOOOOOOOOMMMM!!!!!!"

I ignored it for as long as possible. Am I hearing something? Mmm...possibly. This is a good smoothie. Oh, look at the birds... they are building another nest on our porch....

Finally, I got up with a reluctant sigh and opened the storm door. Something about not taking turns, not sharing, I told them to work it out, stop fighting and be loving to each other, take turns...blah blah blah... then I turned and went back out and tried to get back to my happy place of peace on the porch swing.

Not a moment later, Jasen and Lilli came up the street, and Lilli ran up the driveway in her unbalanced, awkward, about to trip any second, scary yet beautiful way. Jasen followed her up to me on the porch and said evenly, "Could you hear the shrieking from down the road?"

No, I hadn't heard it. I was thankful that I hadn't. Must have been covered by the "Mom MOM MOM!!" behind me through the family room window.

He shook his head. We didn't discuss it further. I knew. It happens. It happens often, we just never know when it will happen. It happened to me the last time I took Lilli for a walk. She collapsed in a heap, screaming crying in the middle of the road and I stood there helplessly, wondering if the neighbors were peeking out their windows watching us.

A few hours later, after Jasen planted sunflowers with Josh and Chloe along the fence, helped me cook dinner and feed the kids, and did a "Just Dance" High School Musical song with Chloe on the Wii that she had been begging him to do, he told me about what happened on the walk.
Planting sunflowers with daddy. If our
chickens eat these flowers, I will be livid.

He had taken Lilli out of the stroller to walk her. She had been super happy to ride in the stroller. But he took her out two blocks away, to have her walk the distance back home for exercise.

"As soon as I put her on the pavement, she started screaming and crying," he said. "I told her, 'Lilli, you're going to walk just for a little bit. You need exercise.'" It was such a short distance to our house. It was not the least bit unreasonable. We know Lilli, she just did not want to walk for whatever reason. And she cannot talk to say, "Dad, I don't want to walk. I like riding. Please can I ride the rest of the way home? Please?"

No, all she can do is feel frustrated that she is not getting her way and she cannot verbally express it, so she screams.

Jasen kept walking her. He held her arm and pushed the empty stroller with the other.

And then came a neighbor, slowly driving up the street.

The neighbor (who we do not know - they live somewhere on a street way behind us, I assume) slowed down and gawked at the screaming scene with Jasen and Lilli. The car pulled to the end of the street, and turned around. Then, it sat there, parked in a weird place, facing the unfolding scene. The neighbor sat and watched Jasen and Lilli as he tried to get her to walk the short distance back to our house, shrieking at high pitches, crying, and trying to pull away from Jasen. But Jasen could not let go of Lilli's arm, because she has no sense of danger or cars. She would run right into the path of an oncoming car and never think twice. She also does not always like to have the palms of her hands touched. so we have to hold onto her wrists or forearms.

To the neighbor who did not know us, it probably looked like my husband was holding his screaming ten year old's arm against her will as she fought to get away from him in the middle of the street.

Because he was.

It must have looked bad. But there was so much more to the story. And this neighbor does not know us, does not know what kind of dad Jasen is to Lilli.

Jasen said he let Lilli go for a minute and let her run down the road as he kept up beside her. The person in the car watched as she ran with her lopsided, awkward gait.

"I let her run so they could see," Jasen said. "I thought, surely they could tell that she was a child with special needs, and that I was not abusing her," Still, they sat there in the parked car and watched. Jasen said he then thought to himself, I don't care what they think, this is my life, and they don't understand.

Finally, the car slowly pulled away and left.

"Unfortunately, we can't not care what strangers think," I said. I told him about the blog post I had recently read about a mom who left her four year old son in the car for a minute while she ran into a store. These were my thoughts when I read her story: aside from the point that she was apparently a typical, loving mom who made a split second poor decision, what got me most was that strangers in the parking lot were watching her, and they recorded her poor decision on their cell phones and turned her in. She was arrested.

Should we all be watching out for other children in the world to make sure they are not being harmed or abused? Yes, we all should. For the sake of those children who are, indeed, being abused and need help.

But the flip side is this: someone could record us on their cell phone and turn us in, thinking we are abusing our child, even when we are not. Because our child has autism and cerebral palsy, and she is non verbal, and that makes for a very tough experience whenever we are out in the public eye. Often, it just looks bad. People always stare. And to a stranger who does not know us, does not know the kind of parents we are, well, it scares me to think that someone would call the authorities on us for a scene that they witnessed.

That neighbor obviously stopped to watch Jasen, to make sure he was not mistreating Lilli. They did not know my husband. They do not know what kind of dad he is. Anyone could pull out their cell phone and video whatever they want. Thankfully they must have eventually realized that Lilli has special needs, and they were satisfied and drove away.

I am not going to lose sleep or think about this incident much after this. Writing about our experience helps me sort through things, and move on in life. This is just another one of those "we live on a different planet" stories that only a parent of a child with autism can tell. I will just tuck it away and remember, in case I notice a stranger watching me in the future. Perhaps I should explain, even though I don't feel like I should have to. When we do explain, people are often more understanding. I guess this is why parents put t-shirts on their kids that say "I have autism, what's your excuse?" or some other little joke.

We don't have any t-shirts like that.

And I don't think I want any. We are not really a slogan-wearing type of family.

I suppose we will always need to know our immediate neighbors, and we might always feel the need to explain Lilli's special needs to complete strangers. Having others understand...helps. It is another reason why I write. So thank you for reading about our lives and understanding. Because I would rather write about it than wear a t-shirt.

A t shirt I will never wear. Just not my style.
A bumper sticker I will never put on my car. Don't like any
bumper stickers on my car. But this one is kinda funny.

Mmm...maybe I would wear this on rare occasions.
 I don't know, just a very small maybe.

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