Lilli

Lilli

Thursday, July 16, 2015

My Tiny Wish for Autism Awareness

April 13, 2015

So…I missed World Autism Day this year.

I saw something about it on a facebook post, and I thought, Oh, World Autism Day. Should we do something for that? Cause…our lives are affected by autism and all that.

And then I didn’t do anything.
OR.... I will be in my own world and completely forget and wear the same pair of jeans and top that I wore on April 1! Truth.

I didn't put a blue light on, I didn't even wear a blue shirt that day. I’ve never owned a blue lightbulb, even though for the past few years, I’ve thought to myself, yeah, I should get one of those cool blue lightbulbs and stick it in my porch light for April.

How hard is it to buy a blue lightbulb?
Or forget to.

I did nothing about World Autism Day…because  I guess I was just too distracted and busy helping my child who has autism.

That sounds like such a cop out. It sounds like I’m just saying that, but it’s true. This was just over a month after we moved here, and we were still not settled at all. So Autism Awareness Day was not even on my radar, because I was still focused on moving a child who has autism to a new house, new school, new everything. And that’s not easy.

I think that awareness days are great. It’s good to be aware. It’s great if other people know about autism. It has a purpose.

Coming from the perspective of a mom of a child who has autism, I wanted to explain what my wish would be for “autism awareness.”  It’s pretty small. Everyone can do it. Here it is:

I wish more people would step out of their comfort zones for a few seconds to be kind to others in public places.

I wish for tiny things:

A smile.

For someone to hold the door for us.

For people to be kind and not stare.

For nice comments and compliments, not awkward questions and comments.

I wish for strangers to be aware that there are those in this world who need a little more help than most. I’m not asking for money, I’m not asking for babysitting, I’m not asking you to buy my groceries, I’m talking about a smile and some understanding.

If you see us coming, please hold the door for us. It’s harder than you think for us to get through a non-automatic door to a store with a child who has a disability. In the past week I have had at least two people look right at me and duck inside quickly, while I struggled with a door and Lilli and a baby in a stroller.

Don’t park in a handicap spot “for just a minute.” I’ll be pulling in shortly and I will have nowhere to park for Lilli. We really need that spot.

If you see me struggling because Lilli is crying and I'm trying to leave the store, please don't stare at us and make me feel like a horrible mother. Say, "Can I help you in any way?" Or if that's too much for you, just smile at me like, You've got this, I know you're doing the best you can. and then keep focusing on your shopping instead of standing there, staring.

I wish it wasn’t so darn hard to take Lilli out to public places, but it is. Extremely hard sometimes. So I wish more strangers in those public places would be kind. There are definitely nice strangers when we go out.

Those are the people who I remember for a very long time.

You’d be surprised at the tiny efforts from complete strangers that have completely affected my life and changed my entire day. If you ever show the tiniest bit of understanding or kindness to a mom of a child with special needs, believe me, she will remember that, and it will warm her heart and probably make her whole week. Your tiny efforts can change a life. That's why you see all of these "An Open Letter to the Person in line behind me at the Grocery Store" type blog posts. These are people who were so touched by the kindness of strangers, they were compelled to write about it. 

It makes a huge difference, trust me. So when it comes to “Autism Awareness,” well, I simply wish that everyone would be aware that just being kind is absolutely huge.  Personally, I think it’s way better than buying a puzzle piece charm or slapping a bumper sticker on your car. Not that there’s anything wrong with that, those things just have never affected me personally.

Kindness affects me personally.

Sometimes we are out in public and I feel the opposite of kindness. I feel "different." I feel like the struggle is completely mine alone, and no one wants to come within ten feet of us to get sucked into our world.

That's a very lonely feeling.

Locked Out of the House with a Potty Problem


One day, we all went out as a family to run some errands. My husband and I needed to get our new drivers licenses here since we moved to a new state. I dropped my husband off at the DMV and left with the four kids to go to the bank.

Sitting in the bank drive thru (I would never attempt to take all four children inside, because Lilli would not handle that well at all) I was leaning too far out of the car window with one of those plastic tube things you put your deposit in. As I reached and fumbled with the tube, Lilli began to cry. I knew she had to go to the bathroom. How did I know? I just knew. It has taken years, but I am almost always right about the "potty cry" these days.

Strapped into her oversized car seat, she cried and ran her hands through her hair and put her hands over her ears in frustration. She threw her head back and cried her angry cry.

My blood pressure began to rise.

The angry cry gets me every time. I get frantic to help her. I cannot listen to the angry cry.

I started to drive towards our house (three minutes away) to take Lilli to the bathroom, but realized I did not have the house key. Dang it. Who leaves the house without a house key? A person who just moved into a new house and hasn’t put the new key on their key ring yet, that’s who. Ugh.

My husband had the house key. He was sitting in the waiting room at the DMV.

“How many in front of you?”  I texted him quickly. I knew he had to take a short quiz on road signs, because I had just taken it earlier that morning. He was still waiting for his number to be called. There is nothing quick about the DMV.

Prompted by increasingly loud angry crying, and knowing I was stuck until my husband got his license, I made a split decision and swerved into the Kmart parking lot. 

It was probably going to be a bad decision. I knew this.

What should I do? Tell my daughter who I’ve worked for years to potty train, “Whatever, just pee in your pull up.” Or should I take all four of my children into a public place to use the restroom?
Any parent of a potty training child has been there. If you want your child to learn to use the potty, you have to make these decisions, and that’s why you end up swerving into parking lots.
“OK kids we are going into Kmart to take Lilli to the potty, get ready,” I said. Really to myself more than to the kids.

When we pulled into the handicap parking space, I jumped into action, barking out directions to Chloe and Josh. “Get your shoes on! Hurry and get out! Stand here by the stroller. Hold this.” I really dislike how Lilli’s mystery crying unnerves me in seconds and turns me into this kind of short, impatient mother as I try everything to figure out what is wrong. I slid on Lilli’s boots (the ones she wears everyday because they are easy to slip on and off, and she won’t wear shoes when she’s riding in the car) and pulled her out of her carseat.

Shoes and jackets on with baby in the stroller, Josh, Chloe, Lilli and I hand hands nicely and crossed to the Kmart entrance.

No not really.

Really it was: I held Lilli’s upper part of her arm because she hates having her hand held. (Sensory issues.) If I didn’t hold onto her arm, she would walk away from me and could get hit by a car because she has zero awareness of danger in roads and parking lots. I pushed the stroller with my other hand and Chloe and Josh walked next to me while I said “Stay close to me!” over and over to five year old Josh. Sometimes Chloe will hold Josh’s hand for me. She ends up doing a lot of helping, simply because I don’t have enough arms. One day, all of our arms together will be keeping Lilli safe.  I think about the future often, and try to wrap my brain around the fact that the six month old  baby I am pushing in a stroller will be helping his big sister in a few years. 

I try not to feel sad about that. That’s the way it is.

As we entered the building, Lilli stopped crying. We made a beeline for the customer service desk and the nice woman pointed to the restrooms. We had to walk by a huge easter egg display which instantly made Josh slow to a snails' pace.

“Come on Josh, let’s go, we’ll look at those later,” I repeated several times as I herded them to the restrooms.  

In the women’s bathroom, I pulled out all the stops trying to help Lilli go potty so that she would feel better. We have worked so hard for all of these years on potty training. I don’t always talk about it, because it’s just not something I think I should go into great detail about publicly. But I will say that potty training Lilli has been a huge part of my everyday life for the past…seven years now. And I see now over the stretch of time, that we are getting there. We are. But it will take a few more years. Maybe even seven more. 

I will not give up. Everything that takes days, weeks, or months with a typically developing child takes years with Lilli. I think about when I potty trained Chloe, who is now eight. I’d say that Lilli is right around where Chloe was after I’d been training Chloe for just a few days.

So a few days of a typically developing child equals seven years with Lilli. Or more.

A therapist once told me, “Even if it takes until she is twenty years old to become potty trained, if she lives to be eighty, that’s sixty years of not having to wipe her bottom.”

Yes. That made total sense to me. At that moment, I decided I would potty train her for as long as it took.

Progress. That’s all I can ever hope for. Even if it takes forever.

Lilli was dry, but she also has trouble going in public places. New bathrooms throw her off. Lots of kids have this issue. Many adults do too, right?

Our luck, we had the bathroom to ourselves. I belted out the Veggie Tales theme song and Chloe joined in singing with me while she pushed the stroller in a small circle near the sinks and smiled at the baby.  I love that Chloe. She doesn’t even know how awesome she is. Josh used the other bathroom stall.  Then came out and washed his hands without me prompting him and waited with Chloe and Nate.

Lilli still wouldn’t go. I pulled out my phone and put Lilli’s latest Youtube favorite on: Veggie Tales Madame Blueberry – Part 3 - in Spanish. I held it out and did a little tap dance there in the handicap stall for her, trying to make her laugh and relax so she could pee.

Nothing. After about ten minutes, I gave up. Maybe that wasn’t why she was crying, I thought, stumped.

Josh held the bathroom door open for us, Chloe pushed Nate’s stroller out, and I held Lilli’s arm and guided her out and around the hallway out to the store. Lilli was quiet now. She seemed okay. As always, I was mystified. It drives me crazy that I don’t know what she wants to say.

Chloe and Josh wanted to look for “Mystery Surprise Eggs,” which is some silly thing they had seen on Youtube of some lady opening up all kinds of plastic eggs with toys and candy inside. So far we have not found them in a store. So we went to an aisle where I thought Mystery Surprise Eggs might be if they had them, and that’s when Lilli fell to the floor and began to sob loudly. She had my phone in her hand, and something was wrong with the youtube video and it wouldn’t play. She threw my phone down the aisle and screamed.

My internal “let’s get out of here now” alarm went off.

“Time to go, let’s go let’s go!” I said to Josh and Chloe in a low tone,  purposely calm sounding, but urgent at the same time. This situation wasn’t going to get any better. I retrieved my phone from down the aisle and turned the baby's stroller to go. Josh and Chloe were riveted to the candy shelf, looking at those silly stick containers of candy with plastic fans on the top. They were ignoring me. They are so used to Lilli’s crying that they are not even phased by it. I grabbed Josh’s hand and tried to drag him away as I wrestled with screaming, tantruming Lilli with the other arm and pushed the stroller with my elbows.  By the time we made it to the registers to get to the exit, everyone in all the lines were standing dead still, staring at Lilli, and staring at me. It felt like there was no other sound in the store except Lilli. If we lived in the 80s, I'm sure I would’ve heard a record screech.

Time stopped for just a second as I took in the instant realization that we now live in a small town, and everyone here knows everyone else, and now I will be judged by my mothering skills by people who know who we are when out with my melting-down autistic child in any public place. I had moved from a city where it was much easier to remain somewhat anonymous. I realized that there was little anonymity here.

I also realized, that I cannot take Lilli back to Kmart. Not for awhile, anyway.

There was not much that anyone in that store could have done to help me. Except that no one offered to help me. They just stared at us and made me feel bad. No one smiled. No one moved. I think they were stunned.

But things do not always turn out like this. Sometimes, people are kind.

Simple Kindness Goes a Long Way


Last  Saturday morning, we all went to the downtown to watch a huge bike race. We were going to split up and I would stay home with Lilli, because we didn't know how she would do. We don't like to split up as a family, but we have found that splitting up can make it easier in case Lilli has a meltdown.

I really wanted to be together as a whole family, so I came up with a plan. We would all go together. If Lilli got fussy, I would leave with Lilli and Nate, and meet Jasen and Chloe and Josh to pick them up later. We took the oversized jogging stroller for Lilli so she wouldn’t have to walk the whole time. She prefers to walk, but only for small amounts of time. She gets tired and overwhelmed when walking in crowded public events, so we use the stroller sometimes.

 Pushing two strollers, we walked around town, saw the bike racers take off, and then strolled to check out our new main street and the shops. It was relaxing, and the kids were great. We loved being out together as a whole family, which is not something we get to do often.




We split up for a short while on the sidewalk and I took Nate, Josh and Chloe into a shop while Jasen walked around with Lilli. When we met back up, Jasen commented, “I cannot believe how many people walked by and just stared at Lilli. No waving, no saying hello, no smiling at her or at me. Just plain staring.” 

“Yeah, it’s a bummer,” I said. “I guess we won’t ever get used to that.”

While we were in the adorable downtown toy store, Lilli got mad and we knew the trip was done for her. I was happy to take Nate and Lilli back to the van while Jasen helped Josh and Chloe decide what to spend their allowances on. Trust me, I had the better deal – those two take forever to decide. We had tried to show different things to Lilli in the toy store, thinking she might like them. Jasen took her out of the stroller and showed her the Lego display, but they were all in boxes, so that just made her mad. Her anger was quickly escalating and we needed to leave. We have learned that when she reaches this point, we've got to just go.

 I walked down the main street sidewalk pushing Lilli’s big jogging stroller with one hand, and pulling Nate’s lightweight stroller behind me with the other. Some people walked past me and smiled. Some made comments. One woman made me smile as she said, “Oh, let me get out of your way cause I’m a slow walker, and wow, you are extremely talented!” I was so glad she didn’t tell me I had my hands full, because that comment gets old to a mom after awhile. At a corner, I stood with the two strollers parked and waited for the “walk” light. A nice man came over to me and made a big deal out of Nate and Lilli, saying hello right to Lilli and complimenting her. I love it so much when strangers are kind. He asked me if he could help push one of the strollers across the road for me.
“I’ve got it, thanks.” I smiled. But man, did that make me feel good.

It is priceless when people see Lilli and smile… and don’t stop and stare rudely. People who say things like:

“Hi, what a beautiful girl!”
“I love your outfit!”
“You’re the big sister, aren’t you lucky?”

These people totally make my day.

People who acknowledge me and say “Do you need help? Here let me get the door for you,” are blessings.

Nothing is better than the gift of help with a door, and a warm smile.  Even when I sometimes decline the help, I love the offers. I cannot emphasize enough how huge it is to have someone hold the door for us.

Compliments like “You must be a proud momma of all these beautiful children,” make my anxiety dissolve and give me a bit of strength to get through the outing.

If this blog post makes a small difference in anyone’s day, then I will feel accomplished. The simple act of kindness. This is what I wish for. Because no one can really ever take away the anxiety that Lilli feels, or that I feel when we go out in public. And honestly, even I do not always know what to do when Lilli gets angry or starts to cry when we are out in public.

But a little bit of kindness does make a world of difference. And it’s free.  It’s easy. No one has to buy a little paper puzzle piece, wear a t-shirt…

or buy a blue light bulb.





4 comments:

  1. This is such a beautiful, honest post Jennie! Thank you for reminding us all how important showing others kindness really is - and what a difference it makes! Miss you all!

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    1. Thanks Lisa! Thank you for commenting, it means a lot to me.

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  2. Thank you for taking the time to gently teach us how to love others well and how to take a moment to look outside of ourselves and be an encouragement to those around us!

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    1. Thank you Colleen, you encourage me. :)

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