Thursday, October 10, 2013

Five Minutes on Saturday

Sometimes, just one simple everyday moment in time can completely rock my world, and give me new perspective.

That happened to me last Saturday, simply because I met someone and spent five minutes with her. Five minutes that I will probably think about for the rest of my life.

The day before, on Friday, I had a moment with Lilli that I rarely get. Lilli still takes a nap every day. She gets tired out. She's almost ten, but something about her neurologically - maybe the seizures - maybe the brain damage - she still must take a fifteen to thirty minute nap every day. And almost every day, she naps in her special needs carseat while we are driving to pick up Chloe from school.

But Friday was different. Jasen had the day off, and he went to pick up Chloe. Josh had fallen asleep on the floor in front of a Batman cartoon. So I decided I would just try and lay down with Lilli to get her to take a short nap. We snuggled together, and she fell asleep.

Years of interrupted sleep since Lilli was born has wrecked my ability to nap. I have a lot of trouble sleeping. But I didn't mind the quiet time to lay next to her, thinking. It was so sweet, this moment with my daughter. I spend a lot of time helping, dressing, feeding, bathing, coordinating her school and therapy schedules and goals. Then there's Josh and Chloe, who need attention too. But I rarely get to have a quiet time with Lilli, where I lay down and take a nap with her in the middle of the afternoon. (Any mom will agree that it's a miracle to have all of your children nap at once.) I thought, wow, I wonder if I will still be taking naps with Lilli many years from now, when Josh and Chloe are older and are both at school all day.

Then I thought, I wonder how many other moms of nine year olds can do this? 

I hugged sweet Lilli, listened to her soft breathing, and I felt blessed.

The next day, Saturday, I met a girl. The girl I will be thinking about for a long time.

I had heard about her for several months, but I had never met her in person.

A friend stopped by to pick something up. She had this girl with her because she helps provide care for her on the weekends. I went out to the van, because I really wanted to meet this girl that I had heard so much about.

I went up to the window of the van, and introduced myself. I won't tell you her name. She is a twenty five year old girl who has autism. She is non verbal. She has no way to communicate. She cannot be left alone. She needs a lot of care.

She was silently sitting in the back seat of the van, looking down at her hands. I said hello to her though the window, and she looked up at me. Her clear blue, beautiful eyes looked directly into mine.

"I've heard a lot about you, lots of good things," I said. "It's so nice to finally meet you."

She was silent. I smiled at her. "How old are you?"

Some long-time readers will remember an old post of mine about talking to a person with disabilitites. (If you missed it you can read it here.) I knew that this girl could not speak. But she deserves to be spoken to. Everyone does. We talk to infants. We talk to cats and dogs. Some of us even talk to plants. I catch myself talking to toys on the floor, although it's not always nice words. If we talk to animals and objects, how can we ever ignore a person with a disability? It's a person. I know it's hard to know what to do when you see people in wheelchairs, people with missing limbs or people with mental challenges. This is what you do: smile, look them in the eyes, and say hello. That's all.

She reached out through the window and touched me.

I waited a few beats, and then asked my friend how old she is.

Twenty five.

This is what hit my heart: She's an older version of my Lilli. Sixteen years from now. Maybe.

Maybe Lilli will speak words one day. You know that is my biggest prayer for her. But maybe she won't, and that's okay.

I felt the urge to hang out with this girl. I wanted to paint her nails and read her a cool book. I looked at her and saw what looks very much like my future daughter.

And I felt overwhelmingly blessed.

The next morning, we went to church, and part of the message was about joy. That as we take communion, part of it is to remember that God wants to give us true joy in our lives. As we took communion together, tears ran down my face as I thought about how my life has not turned out at all the way I expected. We've missed a lot. My high school reunion is coming up. I cannot even consider it. I have missed weddings of dear friends. I have missed holding their new babies. We have missed trips and vacations. We might always struggle to find people to watch Lilli so we can simply go on a date. We might always struggle financially to live on one income so I can stay home with Lilli and provide for her needs.

But I am seeing that God's plans for my life were greater than any idea I ever imagined. And the blessings far outweigh the things we have missed.

When I was twenty-four with a fresh new teaching career, I never dreamed I would one day resign, because I have a child with special needs who I will likely be caring for full-time for the rest of my life. Some might see it as a burden. I cannot explain it well enough in words. And even when I say this, some will not understand or see it.

But it is not a burden.

It is an incredible blessing, and a privilige. A gift from God. A glimpse of Him. A tiny piece of an idea of heaven.

Even if that does not make any sense to you, I had to try and put it into words somehow.

It's true, I do have some very difficult, discouraging moments. It's hard. Very hard.

But it's a blessing. It is a joy. True joy is not always for happy times. Sometimes joy is most precious in the hardest times. When a person can go through a dark time and still know that God is with them, that God has plans for them, that God knows the future and it is all going to work out for our good, that is real joy.

I'm blessed that God had better plans for me than I could ever imagine. And I'm blessed to have met a future version of Lilli, so that I could have a glimpse of my own heart. I realize that I am not dreading the future. I am not afraid. I am not depressed. I am blessed. I have a purpose.

I am Lilli's mom.

Lilli and me at the pumpkin patch this week. 

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.