Thursday, October 3, 2013

Shopping, Crying, and Awkward Questions

Another happy trip to the grocery store. 

"Those who have conquered their problems are more secure than those who have never faced them."

I heard this quote by Dr. Dobson on the radio, and it made me think of Lilli.

We have been working for many months on facing something she loves and hates at the same time:


Lilli is conflicted because she loves clothes and accessories, and she loves having money to pick out new things. She now makes choices by tapping items or handing them to us, or sometimes holding it and kissing us. Or kissing the item iteself. (That's an obvious "I want this.") But the actual shopping part is often very difficult for her. Especially if the trip is not about her.

Shopping is not always predictable. Sometimes I try to make it somewhat structured. As in, "Lilli, I need to get milk, eggs, and bread and that's it." But most shopping trips are not like that. Most of our outings are for groceries, to the library, or to a specific store for something we need. There are many unpredictable circumstances, such as long lines or crowds, and the stores are never exactly the same. Stores change their displays constantly. The music is always different. Sometimes the lighting is different. The checkout line is not always the same line. The people in the store are not always the same people. Usually, I think of something else I forgot I needed, and there goes my "promised" short list. Often, I walk by something I want to take a closer look at, and again, the plan changes. Children with autism like things to be the SAME. Shopping is rarely the same experience each time.

In the past few years, we have had a few very wonderful shopping trips where Lilli was happy, made choices, and we all came out the exit doors with smiles and sighs of relief.

But those trips were rare.

Lilli has cried very loudly in pretty much every store I've ever taken her. For different reasons, I suppose. In the heat of the moment, I can't always figure it out. Sometimes later I realize, oh, she had to go to the bathroom and she could not tell me. Or, oh, she probably didn't like the smell of that place. Or the loud music. Maybe she saw something she wished she could have and was not able to express it to me. Or she is unnerved by the overstimulating aisles and trying not to trip as she navigates around endcap displays. Or some other reason. Maybe she just plain hates being there and just wants to leave. Who knows? It almost always has to do with her not being able to tell us something. It is such a frustrating mystery. I constantly question everything, as in, "Does she really HATE Old Navy in general? Or does she just hate the shoes I made her try on?" I have no idea. We have not been back there since a loud crying melt-down last spring.

Her crying really rattles me. I just want to be able to know why, so I can help her. I can't focus if she is crying. If Josh or Chloe are crying, I can often ignore it because I know why they are crying. (I want that super expensive toy, she's looking at me funny, he touched me...etc.) I just cannot do that with Lilli. And unfortunately, when she is crying, she is not usually up for touching buttons on a communication device to tell us why.

Lilli draws attention in public places by her unsteady gait, loud squeals, and frequent loud crying. When she was younger - from ages three to six - she licked the handles of shopping carts and metal hand railings if I didn't catch her in time. (It only happens rarely now). She will grab any stranger's hand or arm as we walk by them. She will run up to a strange man and try to climb up him for hugs and kisses.

I can handle staring, I really can. I can even handle awkward and ignorant questions (more about that later) but I just cannot handle Lilli sobbing loudly in a store. So for a long time, I tried to avoid taking Lilli out in public places. It was easier to stay home and avoid this problem. I tried to grocery shop at night, when Jasen was home. I used the reserve online/drive through pick up service at the library.  But I knew if we didn't face this going out in public problem, it would never get any better. So I asked Morgan, Lilli's ABA therapist, if she would help us be able to go out in public and somehow make our trips better, more positive experiences.

I remember we went to Hobby Lobby one time in the spring, and by the time we left, Lilli was just wailing. And I was completely frazzled. Morgan, was with us. We had all three of the children. "That really wasn't so bad," Morgan commented positively as we helped the kids into the minivan. I tried to look at it from her perspective, but I all could see was mine. Nine years of shopping experiences with a special needs child had worn out my positive view.

Morgan came up with a therapy plan, and for many months now she has been helping Lilli to try and calm herself when we are in a shopping situation that is really upsetting her. Unfortunately, in order to learn to do this, we actually have to go out shopping. We are getting through it, but it is challenging. Sometimes it goes great! Sometimes it is a "hurry up and let's get what we need and check out" kind of trip. This is not unheard of from time to time for any mom with young children. It's just that in Lilli's case, the whole experience is called therapy. It is different. I cannot treat Lilli the same way I treat Josh and Chloe. Lilli needs to be taught basic things and practice coping skills that come naturally to most people.

Others might think, well, why can't you just let Lilli develop at her own pace? Give her space, enjoy her. She'll be fine. You worry too much. My kids hate shopping too.

If Jasen and I had that attitude, she would never have walked at age three. We pushed her to learn to walk. It was not a sweet, happy, she-did-it-on-her-own-experience. She probably would still be eating puree baby food right now if we had not done years of feeding therapy. Every "simple" milestone in life that typically developing children do naturally, is complicated, hard work for Lilli. If we had a sit back and wait until outings get better attitude, we would just never leave the house. I can't wait until she might get better at leaving the house when she's twenty go to the grocery store. If I want things to get better, we must work on it and face the problem together right now.

Morgan came up with a plan for how to increase Lilli's tolerance of certain places, which included setting a timer on her phone and rewarding Lilli with Youtube clips every minute or so. She gradually increased the amount of time between Youtube clips. She talked with Lilli about "waiting." She has been teaching Lilli to "wait" by counting, or setting a timer, and using Youtube as a motivator. It has really helped.

Recently at TJ Max, I was making a return. As I pulled out my receipt, the store employee nodded at Lilli (who was crying loudly) and asked me, "What's wrong with her?"

I loathe that question.

I could not ignore this employee, as she was taking my return. Otherwise I might have said something short and to the point, and walked away. This was a conversation I was not up for at the moment, as Lilli was very upset and I had Josh and Chloe with me too. Morgan was standing next to Lilli, quietly counting in her ear to teach her to wait in line with me without crying or running away. This is therapy, and it is not easy for any of us.

"She has special needs," I answered blandly. I was already unnerved by Lilli's crying. Now this.

"Special needs? What kind of special needs?" she asked as she peered curiously around me at my sobbing nine year old.

"Um..." (here we go) "...she has autism, and it's really hard for her to go to stores."

"Why?" she pressed.

"Uh... I don't know, it's all kind of overwhelming for her I guess. Can I just get cash back or do I get store credit?"

"What is 'autism'? What does that mean? Does she talk? Why is she so upset?

"'s...well, it's, umm," I glanced back at them, and the growing line of people behind us. "No, she doesn't talk...look, we don't have a lot of time, she does not like it here." Lilli was crying, nose running and all with everyone in line looking at her, while Morgan tried to help her calm herself. I really didn't feel like taking the time to educate this woman at this particular moment. Couldn't she just Google "autism" later?

"Oh. How many children do you have?" She pressed, oblivious to my wanting to get this over with and go.


"Oh...that's not your daughter?" (pointing to Morgan).

"No... that's my daughter's therapist." Wow, that made me feel old.

"Therapist? What kind of therapist? Why does she need a therapist?"

"To, uh, help her with her special needs." (I am now fumbling in my purse glancing at Chloe and Josh, trying to act like I really needed this transaction to be OVER.)

"Oh. So you have three children...and are you pregnant?" She pointed at my stomach. I froze and rewound in my mind what she had just asked me.

"Nope. Not pregnant." Really? My goodness, woman.  "So, I can just use the store credit whenever I want to, right, OK thanks we really have to go now." I held out my hand and practically grabbed the gift card she was still holding as she pondered our situation, perplexed about the fact that we had a "therapist" with us and that I wasn't pregnant.

Some people are really like this out in public. I can't make this stuff up. You might wonder why I did not tell this woman off and embarrass her. She did not anger me, she was just ignorant. You can't get angry at ignorant people. They just do not know any better. And as far as my missing an opportunity to educate her about autism, I'm barely hanging on here trying to stay calm and do this one task without losing my temper or crying or giving up and leaving the return in the back of my closet for five years until I end up donating it. I'm just not always up for explaining our lives to strangers. It depends on the person and the situation.

On a positive note, there are usually more helpful, kind people then there are rude, inquisitive people out in public. I have had countless experiences of complete strangers offering to help me in some way. It really is wonderful when strangers offer to help. A few weeks ago I had a woman come by and see that I was kind of stuck with the kids and the cart, and she sweetly said, "Oh, do you need any help?" It is always nice when strangers notice and show simple kindness, without prying and asking all kinds of questions about why my children are the way they are.

Since the Old Navy melt-down experience last spring, Morgan has been helping Lilli to tolerate trips to the grocery store and other stores. Our trips are getting better. Some places are still hard, but some have improved immensely. I'm not asking for every outing to be a great experience, I just want it to merely be tolerable and safe. Tolerable to me means no one is sobbing or shrieking angrily at high decibles, running away, or breaking anything. Safe to me means no one licks the grocery cart or gets hurt, and I have the same amount of little people with me when I walk out the door as I had when I originally walked in. (I'm including all three of my children in these descriptions.)

Please note that I did not say anything about getting all the items on my list  - or any items at all, for that matter.

I told Morgan we needed to work on being able to go to the library, because I take the kids there at least once a week. At first, it was hard. I hated it. Lilli hated it. She would cry loudly, and everyone in the whole library probably hated it too. Some looked at us with sympathy. Some looked at us with annoyance. Thankfully, some did not look at us at all. I know it probably was nuts to work on going to the quiet library for this goal, but besides the grocery store, it is the most important place for me to be able to take my children. Lilli watched Youtube clips on mute. Morgan increased the amount of time over the weeks and months. Soon, Lilli began to last longer, and feel ok about being in the library. Now, amazingly, we can actually go to the library to pick out books. Ironically, the loudest children are now Josh and Chloe, who are still working on whispering.

I have increased confidence about taking my kids out alone, which I did not have before. This is how I grocery shop without the ABA therapist:

It's not ideal, but it's the best I've come up with for trips by myself. See, the people who came up with this blue truck cart are my heroes. It's for three kids! I can keep all my children in one safe place, and they are all relatively happy - or at least ok - in this picture. It is a back-breaker, getting Lilli in and out with her long legs, but we can do it. See? There's food in that cart. Only reason I took a second to take a picture is because they all looked so cute and the woman at the deli counter was taking forever.

Recently, we all went shopping because I had to get a shower curtain. Morgan was with us. And guess what? Lilli was the best behaved, happiest kid of all three. While Josh tried to climb out of the cart and wailed about wanting a Mater pillow he saw, Lilli was happy, and amazing. She laughed, hugged strangers, and walked with us. Once while we were looking at bathroom stuff, I watched her select a shower curtain and carefully slide it off the shelf, hold it, and look at it. Just like any nine year old, shopping with her mom. It made me smile.

She is learning that shopping is always different, but that's OK. We don't have to love every shopping trip, but we can do it without sobbing.

I have Morgan alone to thank for this. Some shopping trips are more expensive than I'd like them to be, but the fact that I can take Lilli with me and have her actually be happy....that is priceless.

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