Lilli

Lilli

Monday, December 9, 2013

Progress...and "Not Making Progress"

I have really been struggling with something for over a month.

At first I thought I was just feeling sleep-deprived, overwhelmed and moody, but then I realized... no, that's "normal."

This was something more. I have been really down.

I think it started with a short conversation I had with a therapist who has worked with Lilli for several years.

She told me in the beginning of November that she will probably discharge Lilli from her therapy services, because Lilli "is not making progress."

And I just cannot get past it.

I am so hung up on those words, "not making progress," it is driving me crazy. I usually let those types of comments roll off. I have tried to understand her point of view. I have tried to think positively, that sometimes change is a good thing.

This is not a defining moment for Lilli. Of course she is making progress. She has always made progress in some way. You just have to step back further, and look at the big picture with Lilli. She takes a very long time to learn how to do things. Her progress is so slow that sometimes it is like trying to sit and watch the earth turn, or watch a seed grow into a tree. But she IS making progress.

I am not angry with the therapist. I think that she is great. She has done a lot for Lilli. Over the past few years, she has been very helpful and I have a lot of respect for her and her work. I guess I am just now learning that sometimes, therapists think that if there is not enough progress being made within a certain period of time, it's not really worth it to continue working with that child. Sometimes people "plateau" in their therapy, and they get stuck in a rut doing the same thing each week, not moving forward.

I told the therapist that I strongly disagreed about discontinuing therapy, and that I feel that it is very important for her to keep going. Lilli has learned to do a lot of things, but she has SO far to go.

We still feed Lilli with a utensil after almost ten years. She can pick up a sandwich by herself now. She can pick up bites of food and feed herself with her fingers. But she cannot use a utensil. She can't "stab" food. This is a skill she has been working on for many years. If we sit next to her and stab every bite for her and hand her the fork, she will put it in her mouth and put the fork down. (Hey, that is major progress from the days of throwing the fork across the room, trust me.) But how long does a therapist work on a skill until they say, "Well, she can't do it, and we've been working on it for X amount of time, so we are going to just give up on that one."

Does this mean I will be spoon feeding Lilli for the rest of her life? The therapist says she has been working on it for months, and she is just not able to use fine motor skills to turn a fork with her wrist and stab a piece of food on a plate.

I look at stabbing a piece of food on my own plate in a new way, for the first time in my life. What a tiny thing I take for granted.

I guess if I knew for sure that it would never be possible for her to learn to use a utensil, I would deal with it and eventually be OK with that fact. But I am not convinced that she is unable to learn how to feed herself. I think she can learn to do it. It might just take a very long time. This is not the only skill Lilli is working on with the therapist. There are others. The progress has been incredibly slow, creeping along over the years.

I guess too slow.

I think this is one of my biggest challenges as Lilli's mom. How hard do I try? How long do I push or wait for something to happen until I give up and learn to accept things for how they are? Where is the fine line between faith, helping, advocacting, working hard against all the odds.... and denial? When does a "goal" for a special needs child officially get checked off as "unattainable"? When do I allow myself to stop trying so long and so hard?

I think the answer is never.

But I am new at this. Guess I should ask another special needs mom who has been there for a long time.

I don't want to feel like we are giving up. Not now. I have put so much effort into getting her to this therapy for several years. Every Monday, getting Lilli to this therapy is a three-hour chunk out of our lives. I want some tangible return. And I do have some. I just want more.

Our therapy schedule is nuts. Monday is only one day out of six days straight of therapies.

Our therapy schedule for Lilli and Josh. Oh, Chloe's on there once, for dance class.
Everything else is school and therapy. I must look at this every day, even after all this time.

On Mondays, Lilli's homebound teacher wraps up morning school at our house, and helps me get Lilli ready and into the car. I go pick up Josh from his special needs morning preschool class, and we drive a half hour to the clinic. They both always fall asleep. When we get there, I wake both of them up, put their shoes on them, maybe give them a few bites of a snack, and walk holding Lilli's hand while often carrying sleepy Josh and two or three bags of stuff. One of them always tries to run away from me.

Always. I keep thinking that one of these days, Josh won't run.

I don't know about Lilli. I have to tell myself that she is blessed to be able to run at all. But honestly, I do not think these positive thoughts when chasing her in the busy parking lot.

I have chased them in the parking lot and in the lobby many times. (Yeah, we own a "kid leash." It's not that great and they are too big for it.) I just try to always have a good grip on their hands, with bags slung over my shoulder. Always, I wish for a magical person to suddenly appear and say to me, "Oh! Let me help you!"

But it never happens.

Up we all go in the elevator to the second floor. The door opens and I chase them yet again. Someone always has to go potty. Into the public bathroom with the special fold-out potty seat (hence one of my bags) for Lilli for 10-15 minutes of "Don't touch that! Stay here!" and holding Josh up to the sink to wash his hands while making sure Lilli does not wander off or touch anything.

Trust me, I have asked myself many times if it was really worth all this effort. And every time I thought about it, I always came up with the answer: yes.

Yes, it is worth it.

Lilli has therapy for one hour, while I keep Josh entertained/corraled in the waiting room with snacks and toys. I shake off the feelings of being a bad mom while I check my email on my phone and Josh watches Disney Junior. I could play with Josh or read him a book, but I don't. I need to chill. Then Lilli comes out and I herd them both back to the elevator... the lobby... the parking lot... the van.

We drive the half hour back home, where I make them lunch and get ready for the next therapist to show up at our house.

It's not easy. I do not enjoy it. But it's a big deal to me. It is worth it. I do it because I think it is important. It's good for Lilli. She needs it. She enjoys it. Can we live without this therapy? Sure we can. It would not be the end of the world. But I just think she benefits from it in many ways.

I do the same thing the next day all over again, with Josh. Josh has one of his therapies at a clinic on Tuesdays, also a half hour away. Each day is a new day of therapies and driving for us...so my children can get help from someone else besides me. I cannot do it all. I need help, and I am not too proud to admit that. The running around is exhausting. Some parents choose to do it all on their own. Either way, it's hard. I choose to have a team of people involved because I like teamwork. I love ideas other people have. It's good for my children to have new faces and fresh ideas and activities, because I get burned out.

So when the therapist told me she will wait until after the holidays to see if Lilli makes any progress or she might discharge her, it just filled me with such a sense of defeat. Because it takes such effort to even get there each week. I guess I can't explain it any better than that it feels as if I spent a ton of time going to practice, only to be cut from the team. (I know I am sounding dramatic here. Sorry.)

Instead of being strong and level headed, I just sort of crumbled. I have let negative thoughts creep in. Unwanted phrases have been haunting me.

None of this matters. It will always be the same. She's not making progress. All of this hard work...you're in denial.

I stand in the bathroom, while changing her, and in my head I hear, You've been potty training her for six years. It's still the same. You're being ridiculous, chasing a dream. Give it up.

I sit at the table feeding her, and I wonder, should we keep trying? Will she ever get it? Maybe I'm not trying hard enough. Maybe I should do it differently. I'm not being consistent. I need to try harder.

I want to tell this therapist that her words have absolutely crushed me. It makes me feel like all of my help and efforts and hope and goals for Lilli...don't matter.

"Not making progress."

I could cry again right now just thinking those words.

But it isn't true. I will have to battle this phrase right out of my mind for the next several weeks and banish the negative thoughts that came attached to it.

These words haunting me, combined with the challenge of Christmas coming, that's where I am right now. I shared with my sister that I've been struggling. She suggested that I write. So here it is. I am making myself write.

Maybe it will help.

Because when I write, I reflect. I remember. I see things in perspective. I look at the dozen or so posts that I have not ever put on the blog, and I think of all the ones I could write, about things that are exciting and hopeful to me. It is tough, trying to be hopeful all the time. Trying to see progress when someone tells you there isn't any. Trying to look at strengths when there are so many weaknesses. Trying to focus on what is important.

Words are very powerful, and teachers, therapists, and doctors have an incredible cabability to completely form or change a person's perspective. When a professional tells a parent something negative, it might take dozens of friends and family members weeks or months to undo that negative seed that was probably planted carelessly. Weeks of encouragement and "Don't listen to them" comments to try and undo the damage of the "professional opinion." Months of questioning, is this right? Is it worth it? and wrestling with doubt.

I guess my hope with this post today is that it will remind those who work with parents to be very careful with their words when talking about a child.

Always give hope.

Not false hope, just some hope.

As always, I will be truthful with this therapist. She knows that I am disappointed. I do understand her reasoning, even though I do not agree. I will just have to get past this and focus on other goals.

We will get through the month of December, and then...we will see. I am feeling a little better from writing all of this out. But I am about to post this, and it is a rainy Monday morning. In a short while, I will be walking through the rain with a tight grip on two squirmy children in a parking lot with three bags.

Trying to stay positive.

Trying to be hopeful.

Trying...to keep trying.


Friday, November 1, 2013

How Lilli Jumped from 15 Months Old to Second Grade... with One Test.

Over the last few months, I have neglected to tell you that Lilli got a new communication device. I think I may have started to write a post about it once. But this summer was all about painting and fixing our new home and moving into it. The whole amazing experience of Lilli's newest communication device and how she used the ipad to take a standardized test kind of got lost in all of that craziness. She now uses both the ipad, and a new device called the NovaChat. The NovaChat is what she is now learning to use to communicate independently - and that will have to be a different post. For now, I will focus on the standardized testing.

It all started when we were talking about moving. Jasen was getting ready to graduate from chiropractic school in March of 2013, and we were once again at the crossroads of where to go. We thought we were going to move away. I guess it was fall of 2012 when I began to make plans for Lilli in preparation for this. I told the school district that I wanted documentation in her permanent record about what she is able to do. (I am a "think far ahead into the future" kind of mom.)

This was important to me, because just one year ago, her school assessments still said she was at a "fifteen month cognitive level."

Fifteen months.

Please let that sink in a moment, if you have read some of my other posts about Lilli, especially way back when she started to type on the ipad.

There was no way that I was going to let her school record say that, after she has been working on second and third grade level material for over a year. It is in her mind. You just can't see it.

Not because I care what other people think, but because I care about her education - we had to find a way to "prove" that she is smarter than a baby.

If we moved to another school district, I did NOT want to have Lilli start back at square one. I did not want to have a new school district look at her assessments in her file and doubt what she could do, thinking that her wacko mother was completely disillusioned in believing this child could actually do some third grade level work.

I did NOT want her go go into a special education self-contained class where she would be re-taught the alphabet and letter sounds that she probably learned when she was four and five.

I began to ask about asessments.

It is extremely difficult to assess a non verbal child with autism and fine motor issues that hinder her from writing. We know how to assess her, but there did not seem to be a standardized test that would do that. Schools want official standardized testing results, with tests that are administered a certain way. My goal was to prove on paper - officially -  that Lilli can and does understand, and deserves an appropriate education. And by "appropriate," I mean close to or on grade level, but with extreme accomodations. And by extreme, I mean a teacher who is willing to think completely out of the box and work one on one with her to discover what she can do, and think of imaginative ways to bring out that hidden intelligence.

I knew based on her special education path so far, that it would take a special person in a new school district that did not know Lilli, to see her potential and have that faith in her abilities. She might not be able to put blocks in a shape sorter, but she knows her multiplication facts. Darn it, there should be a way to prove that. This is the kind of stuff that makes me so mad and frustrated, especially as a former teacher. I hate that a standardized test is so important in proving to the world what a child knows.

At her IEP meeting in the spring of 2013, the adminstrators were supportive and helpful. We brainstormed. We realized that the only way to do this would be to figure out a way for her to take a standardized test.

So despite my hatred for standardized testing (because as a teacher, I gave many of those tests years ago - enough said) we began to rally for Lilli to take a standardized math test. "We" includes her parents, her homebound teacher, her ABA therapist, her speech therapist, and her occupational therapist. Lilli has a great team right now. We are blessed. It is incredibly important to me to have people that work with Lilli who truly believe in her intelligence and potential. I look back with sadness on years where we had various people who did not believe in Lilli's intelligence and potential. If even one person on this team had said, "Well, come on, Jennie. Face reality. She will never be able to take a standardized test, and that's OK..."

Nope. No more of that. I do not want people like that working with Lilli. I had a therapist two years ago sit me down and try to get me to "face reality," and work on what Lilli "really needed." (In her opinion, that did not include academics.) You want to know what I did about that? I told the school to remove Lilli from that woman's therapy services immediately, that I did NOT want her working with Lilli ever again, and I did not want her to attend any future IEP meetings or even have anything to do with Lilli. Not listening to you, negative professional with "twenty years of experience." 

A few weeks after the IEP/brainstorming meeting with the principal, assistant principal, and teacher, Lilli took a standardized math test. Her teacher and therapists only had a short time to prepare Lilli because of the testing window, but she had been "taking" multiple choice tests with cut up paper for many months. She took the math test on the computer, and used her ipad to make the choices. Un-touched. On her own. No "hand-over-hand" guidance. She took another standardized alternative test for English/language arts, math, and social studies, which used cards that were laid out on the floor for Lilli to choose her answers.

The nitty gritty of the experience would be a different post, with exactly how we did it. One day I hope to really write all of that down for other parents who need guidance in helping their children through a similar educational path. It was a lot of hard work on the part of the teacher and therapists. For now, I will post a few videos of the very beginning stages. In the beginning, it was all experiemental. We figured it out as a team, through trial and error. We used tape, old overheard projector sheets that I cut up, and Vis a Vis markers, along with the ipad. Then, she practiced.

The end result was that Lilli learned to take a multiple choice test with the letter choices on her ipad. When she took the standardized math test on the computer, we went to the school, the teacher pointed to each question and answer choices on the screen, and Lilli chose her answer on her ipad in front of her. Then the teacher recorded which answer Lilli chose.

Lilli took that standardized math test in the spring of 2013, when she was a third grader. She scored around the end of first grade, beginning of second grade for math. Then she took the test again this fall. She beat her previous score by around 20 points.

Chloe is in first grade right now, and just took the same test. Chloe scored very high on her math test, above grade level. I cannot compare these two extremely different children of mine. But for the sake of pointing out that Lilli is really smarter than most people give her credit for, I want to tell you this:

Lilli's score beat Chloe's score.

Lilli is nine and still has a ton of catching up to do. She missed a lot. She spent way too long learning the alphabet and number identification because no one could assess what she knew. Any person who would meet Lilli today would think that she is on a baby level, because of the way she walks, how she cannot talk, and plays with the only toys she can use with her fine-motor skills - toddler toys. But she really is smarter than a baby. I am not pushing for Lilli to "be" anything, to have a certain score...no. I just want an accurate assessment of what she does understand. And since there is no such assessment for Lilli, we had to figure that out.

I never thought I would be thankful for a standardized test. But I am. I am so proud of Lilli. We will keep working. And oh, incidentally, we never moved. We stayed in the same school district. Jasen found a job here close by, and we bought a house in the district. We chose to stay here for now, for Lilli's sake. We feel very blessed with the team of people she has right now, and we do not want to lose that. In the very near future, things will really change. Possibly as soon as this coming spring/summer.  Lilli's ABA therapy will run out and we will no longer have it. I cannot think about that right now, it makes me feel panicky. I am living for today. Trying to beat the clock. Trying to cram in as much catching up and learning as possible before things change.

The other "alternative" standardized test turned out to not be very helpful at all. Her results came back and she scored a "3 out of 4." The scores were completely general, non specific and unhelpful to me as a parent. No grade level, no skill level. Just said that she was "progressing." However she did get a lot of practice with multiple choice testing, and it was a positive experience. We are going to keep focusing on the test that all the other kids take. The school-wide standardized test.

Fo now, we will continue to build up that school record with test scores that do mean something.

And I may be the only former teacher and mother in the world to proclaim this:

I love standardized testing.

Because, it proves, on the world's terms, that Lilli is smart.


If you watch these video clips, it's not the questions and answers that are important. It's the method. This was the first day that we tried to show Lilli the concept of a multiple choice "test." It was all new to her. Also, you will notice that she looks away a lot. But that does not mean she is not listening. She is learning. Transferring the choice she wants to make from the top ipad to the bottom ipad is a new challenge. We used several different apps that had multiple choice formats. We used our ipad to make a multiple choice touchscreen board for her to select answers. The speech therapist brought her ipad and used it for the apps. We taped the clear "A B C D" choices onto her ipad screen next to each choice. The concept began to make sense to Lilli after we worked on this for awhile. She ultimately took the standardized math test without being touched. Yay for "thinking outside the box" with a team of people who care about our daughter!













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:

Shopping.

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 five...maybe...to 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?

"Uh..it'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.

"Three."

"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.

Thursday, August 1, 2013

Dishes Go in the Sink

When you have several young children, your house constantly looks like either a mini tornado just came through, or wild animals live there. I have found that teaching several young children to clean up after themselves and do chores is extremely challenging.

I think about cleaning up a lot. This is mostly because Lilli and Josh have therapists coming over almost every single day. Today there are five people coming.  Two ABA therapists (the line therapist and the lead therapist) and the ABA therapy coordinator for Lilli, and a service coordinator and an occupational therapist for Josh. Yesterday we had the homebound teacher, the speech therapist, the ABA therapist, and a personal care coordinator. We dearly love all of these people who help our children so much. I love that they come to us and we do not have to spend hours each week in the car or in a waiting room. They step over toys, ignore the mess in my kitchen, and use the messy bathroom without saying a word. I know they are here to help my children, not judge my housekeeping.

But I cringe from time to time.

This is my most common thought every morning as I sip my coffee: Who is coming today. Shoot, I should clean the bathroom.

Then I calmly scan the living room and kitchen disaster areas, and try to decide if I care. Many days, I don't care. I let it go. We live here. I cook a lot. My kids play with toys. We all use the bathroom. This is reality.

But sometimes I can't just let it go. If you are not used to having people come to your house almost every day, try to imagine how it feels. I assume that some of you reading this probably spend time cleaning up your house when you have company coming. Ever have someone drop by unexpectedly and you are just mortified at the messy state of your bathroom? You can only hope that there is toilet paper in there, and that no one left any undergarments in the corner on the floor. Your guest is lucky if there's a hand towel to dry their hands with that's not all wet and bunched up on the counter. Let's not even discuss children remembering to flush. Yep, well, that happens here several times a week. We have two children potty training and learning to wash their hands all day. I would pretty much have to clean the bathroom multiple times every day, to act like no one lives here and it is always clean like that. 

Mostly it's not about what other people think of me and my house cleanliness. It's about me being able to stand living here.  I don't play with Legos, and I do not want to step on them. And we have wicked, pointy Legos that look like grass and fire - those really hurt.

It is very important to me to teach my children how to help clean up. I long for the day in the future when they will clean up everything  - even the bathroom! But the process is so slow, some days I can't stand it.

The Clean Up Song


Cleaning up starts small. At first you are patiently showing a toddler how to put a few blocks into a container. You clap and cheer wildly to show them how "great" and "fun" cleaning up can truly be. Then you teach them some silly "clean up" song, and force yourself to chant it in a chipper way while crawling around cleaning up almost all the toys yourself. Your toddler puts a total of two toys back, commenting and playing with each one for a few more minutes.

Somewhere during the sing-songy-"cleaning up is FUN!" phase, the urge to thrust all the toys into huge black garbage bags and throw them out in the garage might cross my mind.

Right now this is what "cleaning up" looks like at our house:

Josh chants the clean up song: "Mean up, mean up, eb-by bady mean up!" While continuing to play with the toys. 

Chloe makes a mad dash off to her room, roots through her dress up stash (meanwhile making yet another mess throwing the dress up clothes all over her floor) and puts on a Cinderella outfit and apron - the "before the ball" Cinderella outfit. Then she has to have her hair a certain way... the right shoes...Mommy please button the back of my dress...and she grabs a broom, because a broom is essential to play the part, even if we are picking up Legos. Dancing with the broomstick in a Cinderella type way begins, with lots of dress swirling and a touch of The Little Mermaid song "Ah ah ahhh..." or some other Disney princess song. And oh, cleaning up? Thought we were putting on a play. What was I supposed to do again Mommy?

This is really consistently true.

This is her idea of the "before the ball" Cinderella outfit. And I did not take this picture specifically for this post. I took it on a random day a few months ago. We must have been cleaning up something in the garage.

And then, there is Lilli. She stands in the middle of it all, and does not begin to move in any clean-up-kind-of-way.

She hears my frustrated cries of "Clean up these toys right now or I am going to suck them up with the vacuum cleaner! SQUINKIES AND ALL!" (anyone who knows what a "Squinky" is can surely relate.) She puts her hand on her neck and smiles. I really love that Lilli gets my sense of humor. She might ignore me in other ways, but whenever I crack a joke for her benefit, I am blessed with a smile, or a giggle from the next room. (The Squinkies belong to Chloe, so I guess Lilli thinks this is funny.)

Lilli is completely aware of the clean-up chaos swirling around her. But she does not run around and help me clean up the toys. We discuss this issue often, and I even went so far as to actually explain to Lilli that we are working on initiation and follow-through with her. As I've said before, I choose to give her the benefit of the doubt. Call me crazy, but if she is smart enough to do math problems and take social studies tests, she can learn the meaning of the word "initiate." And maybe it will get her thinking about what to do with her body when I ask her to clean up.

Lilli is still in the beginning stage of learning to put the Legos back in the bin, and we have to sit next to her and help her complete the job. She gets off task easily. She has trouble initiating and following through. We can't tell her what to do and then leave the room. We have to take her hand and help her put one Lego at a time in the container. That's not really helpful to me most of the time when the place is a wreck and I need everyone to pitch in and help in a big way, fast.

So I am so pleased and proud to brag that Lilli has learned to pick her dish up after a meal, and put it in the sink. Thanks to her patient, fabulous, persistent ABA therapist. She is also learning to throw away her napkin in the trash. Now, it's not perfect. But I don't care. She does hold the dish high over the sink and "drop" it in there with a loud crash. (Here is my plug for awesome Correll dishes that do not break very easily. And rubber mats to line the bottom of the sink) She got mixed up last week and tried to put her napkin in the sink and the plate in the trash. Usually she gets so eager to complete this chore, she picks the plate up halfway through the meal and tries to get up to go put it in the sink while there's still a lot of food on it. Recently, she has wandered into the kitchen and scooped up any dishes at all that are on the counter - including clean ones - and thrown them into the sink.  But the habit has been formed, and that's the important part. She's getting it.

   

I have realized that the emotion that welled up in me on the day of Chloe's kindergarten graduation, is the same emotion I have when Lilli learns to do something. What kind of crazy mom gets choked up when their kid puts a dish in the sink?

Me.

It happened to me the other day. I realized she did it without me even saying anything to her. She finished her breakfast, slid out of her chair, and took her plate to the sink and dropped it in there with a loud crash. I ran around the corner expecting to see a mess, and realized she had just simply put her dish in the sink on her own. I was so proud!

It's such a huge accomplishment for Lilli, It's hard to explain. Every time she learns to do something after months of practicing with a therapist, it's like a mini graduation. She did it. She learned it. She did it on her own without me telling her. I know I never got teary when Chloe put her dish in the sink for the first time. In fact, I don't even remember it. And I probably was just relieved that Chloe finally listened to me and just did it, but certainly I was not choked up.

With Lilli, it is different.

I never got to see Lilli walk across a stage and "graduate" from kindergarten, and that does make me sad. Why didn't we? I don't remember. School has not always been a good experience for her. But Lilli has many memorable "graduation" moments that we usually take for granted with typically developing children.

Maybe we make too big of a deal around here for little things. But the little things are huge when you have small children. Life is all about the little things with a child. When Josh uses the potty and I clap and say, "Yay!" in a normal voice, he will correct me and say, "No, YAAAYYY!!" like, come on mom, you're supposed to YELL and cheer!

This is what we are supposed to do, moms: yell and cheer for the little things our kids learn to do on their own. And cleaning up is an every hour, ongoing battle in every house with young children. If anyone is going to help me clean up in any way at all, I'm ecstatic.

I will continue to fight the Lego, Squinkie battle and sing the stupid clean up song for as long as it takes. But I can celebrate the fact that one of my children has learned to put her dishes in the sink without being asked. And that's quite an accomplishment.

Now please excuse me while I go tidy up the bathroom.

Wednesday, July 24, 2013

Powerful Words About, and to the Flower Girl

After the ceremony in our hotel room.
 She did it! Happy girl.

My niece just got married. She asked Lilli and Chloe to be her flower girls, and Josh to be the ring bearer. What a beautiful wedding, and what a wonderful experience for my children.

How often do children with autism or cerebral palsy get to be flower girls in a wedding? I was not sure how Lilli would handle the job. Would she walk down the aisle? Would she hold a basket? Would she cry? I wondered.

My niece said, "She does not have to do anything. She does not even have to walk down the aisle if she doesn't want to. I just want her to wear a pretty dress and be a part of our wedding day."

Is that awesome or what? A pressure-free flower girl gig. Just wear the dress and look like a princess. If I never told my niece how cool she was about the whole thing, I'm telling her now.

More often these days, I try to let Lilli make her own decisions. She spent most of her non-verbal life having no say in anything at all. We picked out her clothes, chose her food, chose books and toys for her, picked movies for her, took her places we wanted to take her. We did not know what she wanted. We did not know how much she understood. We did not know she cared. She had no way to tell us. One of the biggest life lessons I have learned from Lilli is this: children with special needs should be be encouraged to make their own decisions, whenever it is appropriate. The simple reason why I do it is this: it makes her happy. People like to have choices. They like to have control. They like to make decisions, even if they are little decisions like "Which color shirt do you want to wear?" I did not do this a few years ago. It's hard to do this for a child that outwardly acts like she does not care. I am still learning to do this every day.

It is one of the driving forces behind why we strive each day to help Lilli to communicate, whether it is through an app on the ipad, a sound she makes, a sign, the yes no app on my phone, or some other way. We want to know what she thinks, and we want her to know that she has choices in life.

I wondered if letting Lilli decide for herself whether or not to be a flower girl would help her to be excited about it and, well, honestly I hoped it would help her handle it better if it was her choice to do it.

So I did what I thought any parent of a nine year old would do.

I asked her.

I explained to Lilli what a flower girl does. We were sitting at the kitchen table. She did not look at me or act at all like she was listening. She acted like she could have cared less. And she can't respond verbally with words. But still, I talked to her like I would have talked to any kid. Then I asked her with the ipad how she felt about it.

"Would you like to be a flower girl?" I put the ipad in front of her with the "Yes or No" buttons on her communication app.

She touched the "yes" button. I was satisfied. We have had this scenario many times now. I know she is listening. I know she wants to be a part of decisions. I know she understands.

We had many months to prepare her mentally for this new experience as a flower girl in a wedding. I was resolved to prepare her for this trip in every way possible. I was determined that this one would be different than the last wedding trip. And it was. I want to tell you about my favorite moment of Lilli at the wedding. But first I have to tell  you about why this trip made such an impression on me, and how very different it was than the trip we took two years ago. This wedding post became much more in depth than I had intended, so grab a cup of coffee, and learn from my parenting mistakes that I am willing to share with you.

Words About Our Children


Two years ago, we took almost the same exact trip for my nephew's wedding. I wrote a blog post about it when we returned, called "Autism and the Unattended Wedding." Unattended, because we took turns with Lilli and each of us missed large parts of it. Lilli missed it all, because she was so unexplainably upset. On that trip, we drove for two days, saw as much family on my husband's side as we could in three different destinations, and ended the week in yet another state with everyone in my family at my nephew's wedding. But things were completely different then with Lilli. She had her new ipad, but she did not communicate with it yet. We had not started asking her yes or no questions using the velcro cards or ipad yet. We did not give her many choices - actually, the only choice she really had were which movies she wanted to watch.We did not do a good job of preparing Lilli for the trip, because we assumed she did not understand or care. I had prepared myself, not Lilli. I'd hoped and prayed for the best - that she would not cry, not have seizures, not cause an embarrassing commotion. I was very stressed about Lilli, always anticipating a potential meltdown, worried that she would be anxious and upset in all the different places we went. I spent much of my time explaining to others about Lilli's behavior and special needs. Many times I talked about Lilli while she was right there in the room.  I am sure I probably told people right in front of Lilli, that she was easily upset and might not participate in certain activities. By speaking these predicitions in her hearing, I practically set Lilli up to be anxious and unsure in all the situations. This is a huge regret I have. I am still not sure what happened by the fountain at my nephew's wedding ceremony, but two years later I wonder if it would have helped to let Lilli have a say in what she wanted to wear, where she wanted to sit, and how we spoke to her and about her.

This is a mistake I have made as a parent of a non verbal child. But I think it is a mistake all parents make from time to time: talking about their children while they can hear what is being said about them. It depends on what you are saying, of course. But whatever words you say about your children, your children will hear and believe about themselves. Our pastor said that once in a message, and it stuck with me. It makes me think of words that others spoke about me as a child, many years ago - words I remember even now as an adult, both positive and negative. I'm sure anyone reading this can think of similar memories of words spoken by others long ago. Words are incredibly powerful, and they last over time. So parents should make sure that the words they speak about their children are encouraging, not critical. Predict success and express confidence in your children when speaking to others. Speak words of belief, love, and hope about your children, not criticism, disappointment, and doubt. If you believe and speak those things about your children, your children will hear and believe those things about themselves.

There are so many conversations I wish I could take back over the years, where I expressed doubt about Lilli's capabilities and understanding. I have made this mistake many times, but I try not to make it anymore. Being the parent of a child with autism, this is something I have had to figure out the hard way. Seeing how Lilli's little sister reacts to my words has helped me.

I now notice that Chloe always listens to hear what I am saying about her to others. She runs into the room and questions me.

"Mommy, what did you just say about me? Why did you say that?"

I realize that Lilli listens too, but she never acts like she is listening. Her body language usually displays indifference. I now realize that she has excellent hearing, and she has heard every word we have spoken in her presence for her entire life. Scary, because that includes all the professionals who have spoken about Lilli in front of her over the years. Some spoke in encouraging, loving ways, but many have spoken things that Lilli never should have heard. I have experienced several conversations where teachers or therapists spoke about Lilli with words that never should have been said in her hearing. This is really something to remember for everyone who has children or works with children, especially children with special needs. Parents, teachers, babysitters, therapists who work with non verbal children with autism, please be mindful of how you speak in front of these children. You do not know how much they understand. It is always better to assume that they can hear and understand, even if they do not act like it.

When I look back two years to the last wedding, I see how far we have come. Yes, Lilli has come a long way. But I'm talking more about us. Her parents. We have learned and grown. When I compare the two wedding trips, something about this one we just took seemed easier. Better. I know the kids are older and that is part of it. But there was something else. I really thought about it, and reflected on the differences. There were similarities, such as how awesome our extended family was in so many ways, helping us and helping our children.

But the big difference was really how Jasen and I treated her. How we talked to her, and about her to others. And because of that, it made a difference in Lilli. Because Jasen and I now realize more about who Lilli is, that she is smart, and that she understands and hears everything.

The Second Wedding Trip

I think any parents out there will agree, a happy trip with three young children is something to be very thankful for. Everyone was just happy the entire trip. We had a great time with everyone we saw. We didn't have any major mishaps, like a flat tire. We didn't even forget anything or lose anything. Really, it was probably a small miracle that the trip went so well. It was just a happy time of seeing loved ones and celebrating a new marriage. But I think the fact that Lilli was happy the entire trip was a huge difference from the last trip.

It was the little things that made this difference. On this trip, I noticed that we encouraged her more. We sought to build her up and compliment her. We believed in her more, and gave her the benefit of the doubt when we could not figure out what she was trying to tell us. We asked her questions a lot, and respected her answers.

I think we focused on her more in an older, "she's a big girl" way on this trip, which takes effort because she can become easily unnoticed in the corner for long periods of time- especially if she has an iphone with youtube. We all talked to her (including Chloe), not at her or about her. I love that most of our family members do this too. It takes a lot of effort to try and talk to a non verbal autistic child that seems to ignore you. Words spoken to and about Lilli are important to me, because I know now that she is listening.

I overheard Jasen telling family members how smart Lilli is, that she just took a standardized math test at school with her ipad and did very well on it. Lilli heard him too. I heard Jasen sweetly explain to a couisn, "You can talk to Lilli just like you talk to Chloe. She might not talk back, but she understands everything you say. She's smart and she likes it when people talk to her." I looked across the room just in time to see Lilli smile to herself. I knew she was happy he'd said that about her.

We'd not said anything like that two years ago, because we did not know it. Our view of Lilli has changed.

We spent a lot more time on this trip explaining things to Lilli in advance. We tried to prepare her mentally, and answer any questions she might have, even though she could not verbalize them. It is sort of an odd thing, to talk to someone who can't ever talk to you. It's not like talking to a baby. Lilli is nine years old, so you have to talk to her like a nine year old. Otherwise it is condescending and insulting to her. It's part imagination, part courteousy, part love. Chloe can ask us tons of questions, but Lilli can't. And she gets anxious. I would be anxious too if I did not know what to expect, and if I was not able to ask my questions. Wouldn't you? I have to try and think of what nine year old things Lilli might want to ask us or tell us, and talk to her about those things.

When we drove to my brother's house to have Lilli and Chloe try on their flower girl dresses, we explained to Lilli that she was going to try on her new pretty dress to make sure it fit. We told her that she was going to look beautiful, and we could not wait to see her in it. When we put the dress on her, everyone ooohed and aaahed. My nieces told her she looked beautiful. My sister in law told her she looked like a princess. My brother played Legos with her and talked to her. All the cousins paid attention to her. I saw Lilli smile to herself multiple times, and I knew she was very happy about that dress. But mostly I think it was because everyone made a big deal out of her being a flower girl. It was really sweet.

At the rehearsal, our family and the people from the church were amazing. They asked what they could do for Lilli, if there was anything the church could have to help her feel more comfortable. I loved when others complimented her and paid attention to her. I did not feel anxious at all, and I think our calmness helped her stay calm. We encouraged her and walked her through it all.

At the wedding, we tied a little sprig of flowers at the top of her dress so she would not have to try and hold anything. Right before she was supposed to walk down the aisle, she got a little anxious. Jasen held her and softly sang the Veggie Tales theme in her ear. We told her she looked beautiful and that we knew she could do this. When it came time, she did it. My nephew walked with Lilli and Chloe, while Jasen and I raced up the side to the front to meet her when she got there. Halfway down the aisle, she buried her face in my nephew's side and stopped. She looked around with an anxious look on her face. (Probably thinking, "there are so many people looking at me!") He gently encouraged her and put his arm around her, and she kept going. She made it to the front! We were so proud of all of our children. But I was really proud of Lilli for walking up the aisle in front of everyone. Chloe and Josh soaked up all the attention. But it was a very big deal for Lilli to walk down the aisle with people watching her.

A Special Moment at the Reception

I have seen a lot of pictures from the trip so far, but there is one picture from the wedding that I am waiting for. At this wedding, my nephew and his wife were the professional wedding photographers. There was this one moment at the wedding reception, one memory of my children. It might be the most meaningful moment of the entire trip to me, and my nephew snapped a picture of it. In this one moment, I have a bundle of a thousand feelings wrapped up together in my heart.

Two years ago, we could not get Lilli to even enter the room where the reception was at my nephew's wedding. She was so upset the entire time. She had even cried while we had our family pictures taken. This reception was just as loud and crazy as the one two years ago. But something was different about Lilli, and something was different about Jasen and me. We took her right into the reception room and found our seats. She held my iphone and watched her favorite YouTube clips. She sat quietly at the table and did not try to escape the room. I realized Josh and Chloe were missing, so I ran out into the hall and found them lined up with the whole wedding party.

When I saw everyone lined up, it dawned on me what they were getting ready to do. I looked at the bride and groom at the back of the line with Chloe and Josh.

"Oh! Are you going to be introduced? Do you want Lilli out here too?" I asked them.

"Yes, if you think she'll do it!" They answered. "Just tell the DJ her name!"

Oh, she's gonna do it, I thought, as I ran back in determined to get her. I wove through people and shouted the information over the loud music and happy chaos to Jasen. He quickly took the iphone out of Lilli's hands and scooped her up to take her out in the hallway.

As each couple edged closer to the doorway to be annouced, I looked at Lilli. She had both of her hands over her face and looked like she was about to cry. The music was booming, and we could hear cheers erupt from inside the reception room each time the double doors opened and another bridesmaid and groomsman entered onto the dance floor. Then the doors would shut and the sound would be muffled as we moved up in line. Josh and Chloe were bouncing around smiling with confused excitement. They had no idea what was happening, but they were having a blast. I took Chloe and Lilli together and stooped down face to face with them.

"Ok listen, Lilli, you can do this. All you have to do is walk into the room. They are just going to say your name and everyone is going to clap and cheer for you, it's going to be great! You don't have to do anything except walk in the room! Don't be nervous, you look beautiful, I'm so proud of you and I know you can do this with Chloe and Josh."

I looked at Chloe. "Chloe, can you hold Lilli's hand? Or hold her arm, you know how she doesn't always like her hands to be touched. Can you hold her wrist gently and walk with her and Joshie into the room when they open the doors? Do you think you can do that?" Chloe nodded seriously and said "Yes, mom! I can do that!"

I looked back at Lilli and confidently told her, "Chloe will help you, Lilli. Hold onto Chloe, and you'll be fine. You'll be great!" I smiled and realized that I genuinely believed Lilli could do it, and I hoped she would try. It was important that she try. I did not want to leave her in the corner, watching youtube on my iphone. She might not act like she cared, but I believed this would be an important moment for her.

Later I thought about how two years ago, I would have just given up and said to someone else nearby, "She can't do this." And I would have taken her outside, alone, and felt sorry for myself and her as we distanced ourselves from the loud music. This is what I mean when I say that Jasen and I have grown.

We inched closer to the doors, and I said to the woman who was opening and closing them, "I'm going to coax them into the room and then slip out of the way." I positioned them together. She opened the doors, and I gave them all a little encouraging tap. "OK go go go!" and off they went.

And this was the moment that I hope was captured by my nephew's camera: the moment all three of my children walked into the reception by themselves to be introduced.

Maybe to some, it would not make much sense as to why this particular moment meant the most to me of the entire week. But to me, silly mom who has tears even now as I write this, it just made me so proud. Lilli was included. All three of my children were arm in arm, linked together, doing what they were supposed to do. And Jasen and I had encouraged her to do it. We did not whisk her away and assume she could not handle it. We did not take the easy way out and keep her in the corner with the iphone, away from the chaos.

I had become so accustomed to avoiding potential meltdowns. I knew this moment had the potential for Lilli to stop and crumble into a crying heap with her hands over her ears. But I was so confident that she could do it. I wanted her to do this and enjoy being cheered for in her princessy flower girl dress. I think all children can tell a lot about what grown ups think. They can tell deep down if we believe in them...or don't believe in them. And that can really make the difference in whether or not they try things.

Lilli walked with her siblings into that music-booming, crazy, filled-with-people-and-dj-lights-swirling-reception room, and she did not stop or cry. She held onto her sister and trusted her, and she walked through the doors. She might have been nervous, and she might not be smiling in the picture. But she didn't cry, and I know that took so much concentration and effort from her to do something so overwhelming. A flower girl gets a lot of attention. I wanted her to be cheered for just like Chloe. I knew she could do it.

And she did.

The three of them walked over to the dance floor together as everyone cheered. I looked at my nephew, who had just taken a picture of them, and I said, "They did it!"

It was more than just my three children walking into a reception to be annouced as ring bearer and flower girls. It was more than the fact that none of them cried, and they followed directions in front of that large, cheering reception party. I often see things in a symbolic way. It was just once again that picture imprinted on my heart of my three children, linked together, walking forward side by side in life. That despite Lilli's differences and disability, she held on to her sister and did her best. I hope and pray that they will all grow up loving each other deeply, and helping each other selflessly. I see Chloe's heart already, as she has come to understand that her sister has "special needs." Chloe has moved past the questioning, frustrated with her sister stage, and become a wise, helpful, loving and supportive sister.

I was proud of Chloe, for lovingly guiding her sister, complimenting her, and encouraging her so many times on this trip.

I was so thankful for all of the people who made a big deal out of Lilli and overcame the awkwardness to either pick her up or hug her or talk to her. I was so thankful that my niece asked Lilli to be in her wedding. I am thrilled that my nephew took a picture of one of my favorite moments.

I was grateful to see how simple encouragment spoken directly to Lilli from Jasen and me helped Lilli time and time again throughout this trip.

And I was so very proud of Lilli, for being an awesome, happy, beautiful flower girl. 


This is right after the ceremony. Most people know now that when Lilli puts her hand on her neck like this, she is "saying" something, but the words just won't come out. What do you suppose she is saying here? 

Friday, July 12, 2013

Why I Appreciated "Chick-fil-A Cow Appreciation Day"

Our day began with Chloe spinning too much in Lilli's therapy swing, crying, and throwing up from being dizzy. Then some sibling fighting, a messy breakfast, some potty training issues with Josh, and cleaning up all of that. Two baths later, we were back on track. Just another typical day here. Except that today, in this house that's usually filled with therapists working with two of my children, there was one highlight we were all looking forward to:

Cow Appreciation Day at Chick-fil-A.

We had plans to meet friends there for lunch for this fun annual event where everyone dresses up like a cow. I looked at the clock and figured we would need about an hour and a half to get all three kids and myself dressed like cows and out the door to Chick-fil-A.

I was wrong, it took two and a half hours. No helpers for Lilli here today. I explained multiple times to Josh that we were not dressing up like Spiderman to go to Chick-fil-A, we were going as cows, for Cow Day. We went through several Spiderman and cow outfit changes. Chloe cut out black spots and tails, and I dug up white clothes and made ears. Lilli was quiet and tolerated me dressing her in a white outfit and sticking spots on her. Finally, we were driving down the road covered in black construction paper spots with "Eat More Chikin" signs taped on our shirts and floppy black paper ears and tails. I took care to tape a barrette with cow ears on top of Lilli's head because headbands bother her.

When we pulled into the completely full parking lot, I was relieved to see one available handicapped parking spot for Lilli right next to the door. I parked and picked up the phone to call my friend. She is a new friend. She does not know us very well, and I knew I would need help getting these three inside. She answered her cell phone, and she was just telling me that they had saved seats for us when I glanced at Lilli in the rear view mirror.

She was having a seizure.

"Lilli's having a seizure, I gotta go!" I yelled into the phone and dropped it. I climbed back into the back of the van to her. Chloe covered her face with her hands, upset.  "This is terrible!" she said over and over as I tried to stay calm and tell all three kids that everything was going to be OK. Even though I was panicking inside, and I didn't really KNOW that everything was going to be OK. "Here, call Daddy," I said to Chloe. "I don't know how!" she wailed. I hit Jasen's number and handed her the phone. This was a mistake, because Chloe did not have the phone right on her ear. She kept saying, "Lilli's having a seizure, this is terrible" but she could not hear Jasen. I had to take the phone from her and tell him what was happening.

Even Josh was scared, I think because Chloe was saying over and over, "Lilli's having a seizure!" Josh started to say it too, yelling "Mommy, mommy!" Fortunately they were all still strapped in their car seats, so I didn't have to keep my eye on them as I pulled Lilli out and helped her.

She came out of the seizure, and I started to breathe again.

Now what? I wanted to get back in the driver's seat and drive back home. So many times I have been through this. It never gets easier. It is always just as shocking and scary. Just then my cell phone rang. It was my new friend. She had not heard me say that Lilli was having a seizure, because it was so loud and crazy inside Chick-fil-A  They were just sitting inside waiting for us. I explained that Lilli had a seizure, and she said she'd be right out to help. I told her we might not stay. I had to get my bearings because I was so overwhelmed. I gave Lilli a drink of water and she choked on it, coughing and sputtering.

"Wipe her mouth, mommy!" Chloe sat and watched her drooling sister with concern. I looked at Josh, who was still upset, and I said calmly, "Lilli is OK, we are all OK. Ok?" I fixed my headband with floppy black ears, and grabbed my cowbell. A bunch of black paper spots had fallen off of me onto the van floor when I was helping Lilli. I scooped a few up and slapped them back onto my white makeshift cow outfit. Really I did not even want to go in. My friend came out to the van and helped take Chloe and Josh by the hand to go inside.

When we got to the counter to order, I could not even think. Lilli was probably not feeling that great, and she was crying and shrieking with anger. After one ear-piercing scream, I heard a person nearby mutter, "Whoa." I know. It's loud. I'm sorry. I do not know what to do for her when she gets like that, except either leave, or push through it and hope and pray she gets happy again.

I had given her my phone to watch her favorite YouTube videos, and Youtube would not work. The sweet girl at the cash register was patiently trying to take my order between shrieks, and I said, distractedly, "Hi, um, ok, it's me... and three small cows. We'll take...whatever you want to give us." She laughed and nicely tried to help me through our order. If she only knew why I was acting so weird. I did not tell her that Lilli had special needs, but I'll bet she could tell something was up. My friend took Josh and Chloe back to the table, and I tried to balance the full tray and hold Lilli's hand. Lilli reached around in anger, shrieked, and grabbed the side of the tray, almost spilling it. I kept taking deep breaths. This was hard.

We got to the table, and Lilli was still upset. Finally I gave up on having them eat anything, and took all three of them into the play area. As soon as we did that, Lilli was happy. She loves being around other kids. She did not even climb up into the tunnel, she stood at the bottom and flapped her arms happily with a smile. I saw another mom I knew and we chatted a little. I kept trying to ignore the feeling of wanting to bolt out of there. The kids were having fun, while our food got cold on the table. I never even took one bite.

I realized suddenly with the instinct that only the mom of a potty training toddler has, that Josh needed to go to the potty, NOW. Or there would be trouble in the Chick-fil-A tunnel. I took Josh and Lilli by the hands and told Chloe to stay with my friend, we'd be right back. As I tried to steer the kids through the crowded restaurant, another friend I didn't even know was there popped up from a table and offered to take Lilli for me. What perfect timing.

When Josh and I got into the bathroom, my emotions threatened to overtake my mask of calmness. I felt the tears coming up, and had a thought that might have ruined it all: Lord, why did you give me these dear needy children? I'm not very good at this. And then this thought: Stop it. Get back out there.

So another deep breath, and back out we went. The kids played for a little while longer. I thanked my two friends for helping me, and saw the other mom I'd chatted with earlier. I told them all, "This is hard. I almost didn't come in because Lilli had a seizure in the van when we pulled in." The one mom hugged me, and said, "You're amazing. Bless you, you're a good mom. I can't believe you came in." My friend said, "You did it! You got through it, you came inside with your kids after Lilli had a seizure. Good job, you can go home and write down that you did that." (and I did.) My new friend that we'd sat with packed up all of our uneaten food in a bag and said, "You did the right thing. The kids had fun." She carried the food and my other friend carried Josh.  They helped us all out the door back into our van.

As I drove away from that experience with the free Chick-fil-A food we would heat up and eat later, I had one thought: I don't want much in life, just a little help from nice people. Cause life can be tiring and hard, but when you have people help you along the way, it's more bearable. Friends and family can make you smile through the craziness and tough times. And I know why Chick-fil-A just gave away all those meals to customers dressed like cows. They are just being nice. It was simple kindness.

When people are nice and help me, it reminds me that a little tiny bit of being nice and helpful goes a long, long way. The people that helped me today made my day. The nice girl at Chick-fil-A that sweetly placed my order and said "My pleasure" with a smile, despite my confusing order while my daughter with special needs had a meltdown, made my day. Kindness is worth way more than any chicken sandwich.

Thank you, kind friends, and thank you, Chick-fil-A. Just for being nice. I appreciated it.







Tuesday, May 28, 2013

Dance Recital in a Different Way

The other night I fell asleep reading a book to Lilli. I guess we both fell asleep at the same time. We were all curled up together, with the light on. I woke up to the slightest teeny movement. Lilli was having a seizure. And this is why we do things differently around here...even going to sleep. We do a lot of things differently. I used to cry about it. Now I can laugh about it. Well, only sometimes. That's a lie, I still cry about it too. I guess I'm just getting more used to it as the years go by.

I really don't know if I sleep deeply anymore. It is something that happens to a mom when there is a newborn around. At first, you wake up at every sigh and sniff that comes over the monitor. Over time, most moms begin to turn the volume down. And eventually, the monitor collects dust, and ends up in a yard sale. That's what happened with Chloe, and then Josh.

But not Lilli.

I don't know that we will ever not monitor Lilli. It seems like whenever we start to loosen up a little because she has not has a seizure in awhile, she has a seizure. And we are back to being uptight again. This cycle has been running for, well, nine years now. We have learned to live with this, but we both could use a really good, deep night's sleep. If our bodies even know how to do that anymore. I am not complaining. Just explaining why we may seem uptight or exhausted sometimes. I try not to talk about it. Everyone is tired for their own reasons. Lots of people don't sleep. Right? That's what I tell myself.

Tonight was Chloe's dance recital. Chloe is six, and needs to do what other six year olds do. There is so much that is "different" about our home life. For example, we keep having to explain to Josh that Lilli's ABA therapist does not actually live here. (When she pulls up, he runs to the window and yells, "Morgan's home!") So we want to try and make some things "typical" for the kids as they grow up. Even though the logistics are not always easy, Chloe has taken dance class for the last two years. And the recital is obviously the special event at the end of each year.

At the playground before one of Chloe's dance classes. 

Months ago, I started to plan for this one night. I have to plan like this. I knew we would not take Lilli or Josh to this recital, although it crossed my mind. But no, this night was about Chloe, not about keeping Josh quiet or Lilli happy in a dark auditorium. However...we have babysitting issues.

We cannot have just any regular person babysit Lilli. There are so many reasons why. We feed her, bathe her, she is still potty training, (that is my positive way of saying she needs to be changed, and we don't want just anyone changing our nine year old) she cannot talk, so the person watching her needs to really know her and understand what she needs and wants.

But the biggest reason is of course, her seizures.

When we leave Lilli with someone, we have to explain to them what to do if she has a seizure. That involves giving her emergency medication, which is administrated rectally so that it can go into the bloodstream immediately. Yes. Read that sentence again. Its purpose is to stop the seizure. Sometimes it is not needed, if the seizure is short. Sometimes it is needed for Lilli, because the seizure does not stop. Many times in the past, it has not even helped at all. The whole reason why we moved here and changed our lives has to do with this medicine sometimes not working. One day soon I will tell you that story.

Imagine how awkward that is to pull out a sheet of directions with pictures explaining how to do this. But we have to. We can't take chances. This is the biggest reason why we can't just have any babysitter for Lilli. It has to be someone that can take all of this in and be OK with it. It is a lot to ask of anyone.

Not your average instructions for a babysitter.
(I have to add an aside here, and say that the oddest things can connect special needs moms. I made a new friend once because I noticed she was holding one of these medicine packs. I saw it and instantly knew that this stranger lived the same rarely talked about life circumstance that I did. I walked over to her and introduced myself because of that medicine. She was holding it for her son. We became fast friends.)

We used to qualify for nursing care. That made it easier to leave Lilli and have peace of mind. But we don't qualify anymore. Lilli has a lot of needs, but not enough for a nurse. So we asked a trusted person we know - one of the only non-family members we would leave her with - over two months ago if she would watch Lilli and Josh for this one special event: Chloe's dance recital.

Jasen and I talked a lot about just how long we would be gone. Leaving Lilli for any length of time is often stressful for us. Most people are happy to get a break from their children, for a date or special event. We are happy for a rare break, but then... we worry.

The morning of the recital, I drove by myself almost an hour away to a church volunteer event. It was amazing, for two reasons. One reason was simply because... it was an amazing event. But the other reason was because I got to be just me and not worry about anyone else for about five hours, because the children were with my husband. It was a blessed escape.

When I got home, things were in their normal full swing. Lilli was working with a therapist, Chloe was playing store, Josh was...being his three-year-old-boy self and bugging his sister.  I was just starting to fold some laundry when I heard the therapist shout, "Seizure!!"  I yelled, "Seizure!" to Jasen, who tore around the corner and grabbed the emergency seizure medication we always keep on a table in the same spot. He bolted by me and flew down the staircase.

Lilli had been downstairs reading with the therapist. Jasen ran down the steps, grabbed Lilli, and ran back up the steps carrying her.

Afterwards, as the three of us looked at Lilli and tried to figure out what set that seizure off, I looked at Jasen and said something about getting ready for the recital.

"Well, I don't think that's going to happen for me now." Jasen said, his eyes still on Lilli. "How can we leave her now? The last time she had a seizure like that, she had another really bad one a few hours later."

I remembered. I didn't say anything, and I thought about it. Both of us wanted to go. Who was going to make the sacrifice and miss seeing sweet Chloe dance her big moment on stage?

Then, I had an idea. I explained the crazy plan to my husband. He listened, and slowly agreed that we could probably make that work. I went back to getting Chloe ready for the recital, wondering how it would go.

At 4:00, I left with little Chloe, hair in a bun and pink tights and all. Jasen left twenty minutes later in the van with Josh, Lilli, and the babysitter. They pulled through McDonalds and got Josh a rare treat - a happy meal to keep him busy in his car seat. Ten minutes before the show started, they pulled in and I met Jasen in the parking lot. He was carrying Chloe's surprise rose.

I had saved two seats down front. We slipped in right before the lights went down, and Jasen texted the sitter out in the van in the parking lot to make sure the last five minutes had gone OK. The plan was for her to text or call us if Lilli had a seizure, and Jasen could dash out to her in the parking lot and be by her side in seconds. It was a little unconventional, having our kids be babysat in the van in the parking lot for a few minutes, but it was the only way we both felt safe to attend the recital. We would only stay until Chloe danced.

Chloe was the third group to dance, and Jasen watched her with his phone in his lap just in case, while I videoed Chloe with my phone. As soon as she was finished and the ballerinas did their little tiptoe-run off the stage, Jasen and I slipped out a side door.

We met Chloe in the room where all the other dancers were, and Jasen gave her the rose. I took a picture of her with her daddy, and then Jasen said good bye. He left to go back to the van where our other two children were with the sitter, happily watching a Sesame Street movie.

I would not say a picture is worth a thousand words for this one. You can't tell what is going on behind the scenes.

We'd made it through. No seizures. Total time together in the auditorium was I think twenty minutes.

Chloe and I snuck back in and watched another hour of dancing. She snuggled on my lap, still in her tights and ballet shoes. I don't even think she knew about any of that behind-the-scenes-craziness. And that's a good thing. She doesn't need to know all of that. She only needed to know that both mommy and daddy came to see her dance recital.

I don't like to use the words "always" or "never." We don't know what God can do, and sometimes the seemingly impossible can be made possible. But there are just some things I think it is safe to say "always" about. I am pretty sure that we will always need other people in our lives to help us with Lilli. It will probably change over time, how people help her and how they help us. Maybe one day, we will be able to take Lilli certain places that we have not been able to take her. Until then, we depend on others to help. And I am so thankful for all of the helpers God has put in our lives. I depend on all of them so much. If someone can't come to help me, it usually changes our plans for the day. If someone can't help with Lilli, it often affects whether we do certain activities as a family. I am thankful for the help, and sometimes worry about what will happen when certain people move on and cannot help us anymore. But then I remember, God knows what we need, and He will put someone else in Lilli's life to help her.

And we will just keep doing things... in a different way.