Lilli

Lilli

Saturday, August 16, 2014

Reality Versus Hope and Faith: Why I Choose Crazy Hope

I’ve been thinking about the concept of “reality” lately.

I realize that some may have thought over the years that I am slightly out of touch with reality. All you have to do is look at us from a short distance, and my hopes and dreams for the future will seem ridiculously out of reach.

For example, in the past when I have expressed the hope that Lilli will speak again one day, I know that there are some who feel sorry for me, because they think that, realistically, it will never happen. This is based on well known, research-based statistics that say that if a child does not talk by the age of six, they will never talk.

Well I don’t care one bit about that stupid statistic.

If you just read that last sentence and shook your head, thinking, She’s nuts. She can say that she doesn’t care about statistics and reality but that doesn’t mean they are not true, well, this blog post might irritate you all the way through. Because I am going to try my best to explain our view of reality... and crazy hope.

I am pretty sure hope and faith would not make sense to someone who is focused on reality all the time. It is a completely different perspective on life. Am I saying that I live with my head in the sand, completely out of touch with reality? No. I am choosing to focus on hopes and dreams instead of setting my sights on what is right in front of me, and on what others think is realistic.

I have hopes for Lilli that do not make sense to others. I hope that Lilli will do certain things independently one day.  I hope many things for Lilli.

Here is a list of some of my hopes and dreams for her: (many may seem lofty...or "unrealistic")

  • That she will talk. Any words at all. She used to have a list of words. I dream that they will come back. Very often she will "say" something and it sounds so much like a real sentence - real words you can pick out...but just garbled up. 
  • That she will be completely independent when using the potty.
  • That she will type completely independently, and read independently with some sort of e-reader. I mean hold it and read it herself.
  • That she will feed herself with utensils – an entire meal.
  • I hope she will help around the house one day and complete simple chores like picking up clutter and wiping the table.
  • I hope she will dress herself, even if it’s in an elastic waistband pair of shorts and a pullover shirt with no buttons.
  • I hope she will put on her own shoes – even if they are Velcro or slip ons.
  • I hope she will participate in a class at a school and work on grade level to independently complete challenging academic work, even if it is adapted through a computer or on an ipad. (Right now she is doing this with help.)
  • I hope that one day, she will have real friends that she can communicate with independently and spend time with. I hope she will learn new activities and be able to participate in them independently with satisfaction.

I used the word "independently" a lot. Which is not very realistic, because she really isn't independent with much at all...right now.

These are things I hope for, whether others think they are unrealistic or not. How can I not hope for these things to happen one day?

I don’t really care if other people think I am focused on goals that we may never attain. All of the goals we have ever had for Lilli have been "unrealistic" in someone's eyes. Way back to when she was in the NICU and had a feeding tube in her nose and I still had lofty dreams of breastfeeding her. She had so much trouble even taking a bottle. I remember sobbing and sitting on the couch trying to nurse her for two weeks after she came home, so extremely frustrated. 

It took a long time, but she finally got it. I was crazily determined. And then I nursed her for two years. 

Then there was the speech therapist who said, "I don't think Lilli understands that a picture represents an object," when I asked if we could try the picture communication system, so Lilli could have some way to tell us what she wanted. We tried an experiment with pictures on a board. Lilli would not pull the pictures off. She just sat there and cried. 

We could have given up then. But we didn't. We found other therapists who shared our hopes and kept trying... and eventually, Lilli "got" it. She used the picture exchange system for years until we got the ipad.

I see everything else Lilli has ever learned in her whole life as being just that way. Taking forever, seemingly impossible, with some other people sympathetically saying, "It's ok, she's different, she just can't do this, and it's OK."

No. 

That's not how it is with Lilli. Lilli is like climbing a mountain where you cannot see the top. I don't know how big the mountain is. I don't even know if we will ever get to the top. But we still have to climb. Otherwise we'd just sit on the side and cry.

Would you think it would be better for me to just say, “Well, that’s it. We tried for a few months, but she just doesn't get it. I have to be realistic, she has brain damage, so I guess we will just put her in an institution and move on. Oh well.” 

That's how I feel sometimes when people think "realistically."

Reality

I'll focus on reality with Lilli for a moment. All of those goals I listed above that I hope for, well, they might sound crazy. Because she’s not even close to any of them. Just not even close.

If I were to look at my life with stark reality right now, I would say these things:
Lilli cannot talk. She has brain damage. She used to say words when she was one, and then they all disappeared. 

This is reality.

Lilli has been potty training at the pace slower than glaciers melting, for the past seven years. She has absolutely made progress. But she is nowhere, nowhere near independent. This is reality.

Lilli does not feed herself, dress herself, put on her own shoes, complete household chores, or complete schoolwork independently. Reality is that we help her do every single small thing all day long, and very often, that depresses me and exhausts me. I have many moments every day when I sigh to myself and feel utterly defeated. 

Like climbing a mountain, indeed.

Reality is that Lilli does not have any friends that she spends time with. Lilli has never had a playdate. She does not have friends that call. She has never had a “friend” birthday party. We would not know who to invite. She has never been invited over to a friend's house to "hang out." I really do not even know any other ten year old girls around here. Last week Chloe made my heart hurt when she looked at Lilli playing with Legos by herself and commented, "Lilli needs a friend."

Yes. She does.

Reality This Week

ABA therapy is over. It ended in July. All of the skills and goals Lilli has been working on for three years...right now the depressing reality is that Lilli is just not getting that therapy. It’s done. It’s done because the state says “You only get three years.” No matter what. So that’s it. We went from 29 hours of ABA therapy a week…to nothing. Even more depressing, our beloved therapist, Morgan, moved away to another state. 

School is starting in two days, and Lilli does not have a homebound teacher. Yet. They are working on it. 

Lilli’s beloved, wonderful homebound teacher of three years, Leslie, has just taken a full time position in the school, and we do not yet know what will happen with Lilli’s homebound program.

We just had three amazing years of intense ABA therapy with Morgan, and with Leslie, our fabulous homebound teacher coming every day, and now, all of that has changed. I do not know what comes next. I do not have a clue.

I am stumped as to how this school year should look. Every day I have waited on news from the school district, waited for the phone to ring...to know if Lilli even has a new teacher. Thursday, I got news that things are in the works. We just need to be patient. Maybe God will send us a new, incredibly awesome homebound teacher this year.

I really hope so. It's Saturday, and school begins Monday. 

These realities are difficult to type out. But they are truths. It is our reality.

For right now.

Hope Doesn’t Always Make Sense

The thing about hope and faith is, well, they often do not make sense. In fact, most of the time, it might seem just plain crazy to other people. 

I always look back to our past in order to learn and remember that hope always comes first. 

Hope comes before things become real.

If we all focused on reality - what we know for sure -  all of the time, what kind of depressing life would that be? We would never do anything challenging. We would never take risks. We would never dream or hope for something that seems out of our reach or completely impossible.

People who accomplish amazing things in life start out with crazy hopes and ideas, and often others think they are out of touch with reality.

And where do we put our hopes? If we put hope in ourselves, we will fail. Because we are human. No one is perfect. We all, always make mistakes. No one is even close to being perfect. 

If we put hope in other people, they will disappoint us. How many married people can say that they put their hope in their spouse, and they were deeply hurt or disappointed? How many can say that they put their trust and hope in their parents, teachers, friends, pastors, or some other trusted person in life, only to be shocked by hurt or deep disappointment? 

But I am talking about putting hope in God. Hope comes from God.  He made it. He gives it to us. We don’t find hope in ourselves. We don't find it in other people. Big, crazy, impossible hopes are easy for God. He can handle anything.

I hope for big, seemingly impossible things, because small hopes are “realistic.” When you hope “realistically,” you put parameters around your hopes. You see an end result in your mind that you think you can accomplish on your own. They are not really hopes, they are more like "goals." You are only hoping for something that you think you can control yourself. When people say, "I don't want to get my hopes up," I think that means they are afraid to hope, because they know they are unable to control the outcome themselves and they are trying to avoid disappointment.

Big hopes are for when faith is required. Big hopes seem crazy to others. Big hopes are for miracles. Big hopes are when you ask God for something, because there is no possible way on earth you could ever do it on your own.

Immeasurably More

This is a verse I have always loved:

“Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be the glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.”
Ephesians 3:20

It is describing that God can do so much more than we ever hope. This is where reality is left in the dust. It’s not just “more.”

It’s “immeasurably more.”

It’s not just “what we ask for.” It’s “more than all we ask or imagine.”

When we only focus on our reality, there is nothing to hope for. But when we look at our hopes and our dreams, that’s where God steps in and surprises us, when they are things we could not possibly accomplish on our own. I might not think this way if I had not experienced it in the past. I think all of us have experienced it at some point in life, but some may just not recognize it.

What is something you hoped for, and then things in your life turned out way better than you ever even imagined or hoped? A better ending than you had ever even dreamed? Surely there is something.

This is how I look at the story of Lilli: it is not over yet. It has barely just begun, and I really have no idea what life will be like for us in ten or twenty years. We are only in the beginning chapters. I have a choice. I could sit down and cry about how I think she will never be toilet trained and how I might as well give up on trying to get her to type because she’s just not getting it and it’s not realistic to try and teach a child with autism and cerebral palsy to type.  I could give up on a lot of things, because they are not “realistic.” I could sob for weeks and just resign myself to the fact that she will just need to go into an institution for full time care and "this is my life.

Or... I could focus on my hopes and dreams for her, and wait to see what God has for us that is “more than all I can ask or imagine.”

Crazy Hope Makes a Person Look…Crazy

Here is just one story of how I learned about crazy hope.

Six years ago, this was our "reality":

We lived in Virginia. Jasen was a middle school teacher with a steady income and insurance coverage for our family. We owned a home. We had two children, and I was a stay at home mom. We were extremely frugal and were careful to make ends meet on his new teacher salary so I could stay home, because Lilli needed me home and I had baby Chloe. We had friends, belonged to a church, and had a routine. Life kind of made sense, in many ways. Jasen worked hard to pay the bills and care for the big things around the house and yard. I worked hard to care for our young girls and take care of all the things a stay at home mom takes care of.

Yet, things changed drastically. God sparked a dream in Jasen’s heart. We began to pray earnestly about making big changes. God was leading us in a direction that was completely unknown.  It seemed crazy! How could this be? Why would we “fix something that wasn’t broken?” Many circumstances brought us to this new perspective in life, and we were certain that God was leading us in a completely new direction.

These became our hopes back then:

  • For Jasen to take organic chemistry, apply to chiropractic school, and get accepted. 
  • For us to apply for and get gobs of school loans.
  • For us to sell our home (in a dead market, on a street with five other homes for sale).
  • For Jasen to quit his job, trusting that this was the right thing to do.
  • For us to move to another state, where Lilli would attend a new school, have new therapists, and Jasen would attend chiropractic school for almost four years. 
  • For Jasen to graduate and open a practice somewhere. 
  • For us to own our own home again. Maybe have more children.

It was ridiculous. It was not “realistic.” And it certainly did not make any sense.
Who in their right mind would do such a thing? So drastic! Such a crazy risk! What? Take out loans? Begin a new career at the age of 42? Jasen already had a perfectly good career. We had a home and a life. Why in the world would we ever leave that, to venture into the unknown?

Because of hope. That’s why. We hoped for bigger things. Crazy things.

And because of God. Because He can do immeasurably more.

Our reality now… was only crazy hopes and dreams six years ago. Back then, whoever we told our plans to thought we were absolutely nuts.

Our Crazy Hopes Became Reality

We sold our home in record time (before all the other houses on the street, for a good price). That was amazing. We did not do anything more special than anyone else trying to sell a home. We moved here, and Jasen completed his doctorate and graduated at the top of his class. He now (as of three weeks ago!) owns his own practice. We own a home, unbelievably. Buying this home was a small miracle, for so many reasons I cannot explain here. We were blessed to have a third baby in the midst of all of that (Josh). And now we are blessed to be having a fourth baby in less than two months. We were blessed beyond belief to have ABA therapy for three years with Morgan, and homebound for three years with Leslie. These young women helped change our lives. We were blessed to finally find a loving speech therapist who truly believes in Lilli's intelligence and potential, and has worked hard to help us make immense progress with communication devices. We were so blessed to find all of these wonderful people here, that God put in our lives for so many reasons.

I never saw that coming. I had no idea how amazing some things would be when we moved here.

Was it easy? Heck no. Was it crazy? Yep. Was it impossible? Not to God.

And don't think for a minute that we ourselves made any of that happen. You could argue that Jasen worked hard and studied all the time. You could argue that we worked hard to make our home nice so it would sell. You could argue a few things. But not really that much. We had nothing to do with the crazy buyers who purchased our home overlooking the TWELVE STEPS up to the front door. We did not have anything to do with the amazing teachers and therapists that were put into Lilli's life to help her. We were amazed to find our church, where Lilli has her own class with awesome volunteers and Jasen and I can actually drop her off and go to service together. And was it a miracle that Jasen was able to actually focus, study and be so successful in school with three young needy children (who didn't sleep much) around him all the time? You bet.

We had so little to do with all of the incredible things that happened to us. 

This is what I have learned. When I look at my life with the perspective of “reality,” there is little room for hope, or faith. I set my sights on a future that only I think I can achieve.

When I hand my future over to God and put my hope and faith in Him, He is the one who makes things happen. He alone is the one who can open or close doors. When we think that we are making things happen on our own, we make God very small and insignificant. Many people think that God is distant, mysterious, or does not exist at all. They cannot fathom why a person would ever put faith in an invisible god who seems to be a figment of imagination to many.

I struggle to explain to others why God is so real to me. That He reveals Himself to those who truly seek Him. That He is evident, everywhere, all the time, but only if you are truly looking to find Him. If you don’t look for Him, you won’t find Him. If you don’t believe that He might possibly be real, you won’t experience meeting Him.

Reality Now: Time to Have Crazy Hope Again

The story of how Jasen came to have his own practice is a chapter of its own. During the past seven months, we found out we are going to have another baby, Jasen worked incredibly hard to acquire this new business, Lilli’s ABA therapy came to an end, Lilli’s therapist Morgan moved away, and her homebound teacher is moving on to a new job. I decided to homeschool Chloe for the first time ever, beginning this school year. The baby is coming in a month and a half. Meanwhile Jasen is commuting, and we are just waiting for awhile until after the baby comes to figure out all the moving details.  Doors are closing and opening all around us, faster than we can keep up. Reality is that we are in transition, and we are not sure what comes next for Lilli, school, where we will live, when we will go, and how we will eventually transition to the new location an hour and a half away in a new state (where Jasen has his new practice) by next year. 

Reality is that I have mounds of paperwork ahead of me, getting new specialists, doctors, therapists, and teachers for my children, along with a very likely battle with insurance and new state waiting lists for various services for Lilli.

You may think we are crazy. You may be thinking, What? New house? New job? New teacher? New baby? Homeschooling? (What?!) You're going to move again? New state? You just moved! You just bought that house! You just fixed it up! (and it's not even finished!) You’re having a baby! How are you going to homeschool? What about packing? What’s going to happen with Lilli if she doesn’t have an ABA therapist or a homebound teacher?

And actually, I know more than some are just thinking these things. Because many of these questions have already been asked to me in disbelief by others who know what has been going on.

Well, we do not know about any of the answers. Realistically, I should just sit down and cry about all of it.

But we did not just get here on our own. God has led us to this point. We know this is what we are supposed to do for now. I do not know all the answers. But we have hope.

We trust God. He is the one who is leading us. That's why I can choose to have crazy hope.

And I have crazy big hopes that whatever happens in the next year, wherever we end up, it will be better than...more than anything I can even ask for or imagine.

Immeasurably more.





Friday, June 27, 2014

Special Needs: What Relatives and Friends Should Ask

We had someone over for dinner. During the visit, all went well. We had a nice conversation. The kids behaved and ate their food. We kept the meal simple. The house was pretty clean. On the surface, it was smooth and uneventful. And nice to have him visit.

But after he left, I cried.

I cried, because sometimes even close friends and members of our own family do not always know the details of our struggles. How would they know unless we tell them?

I sat on the bed and told my husband why I was sad, and he listened and completely understood. My husband is my best friend in life... he is the only other person who truly understands.

I felt like we lived the night in two parallel worlds. The real world, and then the on-the-surface, everything is fine and normal world.

With our visitor, we talked, we ate, and I mentioned a few details about Lilli that really surprised him. I tried to explain a few things, but felt that really explaining would be too much information, and that he might not want to hear all that stuff.  I guess I wasn't sure. He didn't ask, so I didn't explain. There is also a part of us both that feel like some people should already know. That they would know if they would just ask.

But that is just not true. I am realizing this. It is partly my fault for not helping them understand.

When it comes to special needs, people do not know what questions to ask, so they don't ask. And that even includes close friends and family.

A relative once told me after she had read several of my blog posts, that she had no idea that I had been struggling with certain things. This person and I are very close, so she was surprised. I didn't keep it from her on purpose. I just...don't always bring things up. She didn't ask. I don't know why I didn't tell her. She pointed out to me that I seldom complain about things. I didn't realize that about myself. I thought I complained a lot - everyone complains. I try not to complain too much.

Writing it out is a different story. I really spill it here sometimes. There's no way I could ever tell someone all of these details about our lives in a conversation. Not unless you took me out for coffee somewhere without my kids and really asked me about things for several hours. And that happens so rarely that I guess it's partly why I write - to get it out. But many of our relatives and friends don't read this blog. They might know more if they did. That's ok, I'm not offended. It doesn't mean they don't care...I don't think. They just aren't into reading it. That's alright.

Here's why I cried: Because he just didn't know about certain things we struggle with as parents of a child with special needs. And sometimes that mere fact makes us feel very alone. It's always better when you feel like people understand you. He cares a lot. We know he does. But no one can really know.

I mentioned that our ABA therapy was coming to an end, and that Morgan, Lilli's therapist who has become like family to us for three years - like a sister and best friend to Lilli and like a daughter and friend to us, is moving away. He asked if we couldn't just find another therapy to do with Lilli, or another therapist. I tried to explain it, but I couldn't. I could not explain to him that I feel like a part of our world is falling apart, being torn away, and that I cried for an hour after Morgan left today, because what will life be like without her? Instead I rambled about the waiver program ending, and that we will not even get ABA therapy at all anymore, and that there is nothing - nothing next. I realized I could not possibly explain in just a few minutes what all that means for our family...so I just didn't explain.

Instead I mentioned some of the many things Morgan had worked for years to teach Lilli - like how to put a plate in the sink, how to sit on a swing, how to pull down her pants when she goes to the potty, how to communicate simple ideas on a speech device, how to wash her hands....

Many people do not know that we must help Lilli with even the smallest of tasks.

I explained that she has trouble turning faucets on, that she cannot get the soap out of the hand pump by herself...that we have to prompt her to rub her hands together, turn off the water, and that Morgan has been trying to teach her how to get the towel and rub her hands on it every day, multiple times a day for several months now. It's not like Lilli doesn't feel like doing it. She...doesn't know how to make her hands and body do it. I felt like explaining all of that was... a teeny attempt to get him to glimpse how much help Lilli needs all the time. It felt like a drop in a bucket.

No. A reservoir.

Later, I mentioned something about Lilli recently having a bad seizure. He didn't know, but it was not like we called people to tell them.  He was immediately concerned and asked if she was ok. I said yes, but I didn't really go into detail. He didn't ask about details, so I didn't tell him. I didn't explain about how she had been taking a nap, and Morgan yelled to us in a panic and Jasen and I tripped over ourselves racing back to get to her, how Jasen yanked her clothes off and gave her a rectal dose of Diazepam and Morgan and I ran to get the oxygen tank out of the next room because it was a bad one, we could tell. But this is "normal" to us. How would people even have any frame of reference unless we told them what it was like? Most people do not know that every time Lilli has a seizure, it puts both of us in a depressed mood because it is the most helpless feeling we have in life, and it has been happening for ten years. We don't bring it up to others, because it is just a part of our lives. But it is traumatic every single time. It sets us thinking about a list of depressing thoughts, and we have to comfort each other and pray, because there is nothing else we can do.

But I guess other people don't know unless they ask.

During dinner, no one spoke about how we feed Lilli because it is so hard for her to feed herself. This is our normal, and he knows this. But most people do not know the incredibly long story behind all of her feeding issues, and how we have struggled so much for her whole life. We don't talk about it unless someone asks.

When Lilli walked by later, I knew she had had an accident, and I swiftly took her to the bathroom to change her and give her a bath. I didn't say anything. Most people might not know that she is still potty training. We don't really talk about that.

Anyone visiting would probably not know that in the bathroom, I do every single task for Lilli. That when I gave her a bath that night, I took off her clothes, helped her get into the tub, that I scrubbed her and washed her hair and rinsed her off and helped her climb out, that I dried her off and dressed her in her pjs (putting her arms in her sleeves, helping her step one leg at a time into her shorts while she held onto me so she would not fall) and brushed her hair.I do all of these things for her even though she is ten, because she cannot do any of it on her own, but my seven year old can do all of those things by herself.

Most people would not know that when we go to bed, that Lilli sleeps in our room, and that we take turns listening for her all night long, making sure she is not having a seizure, and that sometimes she wakes up in the middle of the night and we have to help her go to the bathroom or lay with her to help her go back to sleep. People do not know that we feel stuck in this less-than-ideal sleeping situation, because how do we get out of it? How do we sleep at night knowing that Lilli could have a life threatening seizure and if we are not there, we would not hear it or know? Even our closest family and friends do not know how this affects our lives, our sleep, our family, and our marriage.

Friends and family would not even know to ask about any of that.

Over dinner, we talked about traveling, and places we might like to go one day. I said I would love to go to Hawaii one day. But I didn't say outloud how it depresses us that we cannot ever leave Lilli and that we don't think we will ever get the chance to go to Hawaii or any place like that. He didn't ask, but I feebly attempted to ramble about it anyway, that we cannot leave Lilli to go away, that we have never left her over night, and that we can't just leave Lilli with any regular babysitter. I tried to explain it to him, but then I realized he couldn't truly understand. No one can. It sometimes feels like it's too much to explain how and why.

This is my fault, when people don't know. I cannot fault others for not knowing what to ask. And I think that other parents of children who have special needs might feel this way sometimes - like even their own relatives don't understand what they are going through, raising a special needs child.

Parents, they will not know or understand unless they come over, see it, and you tell them.

So here is my attempt to get this idea out there to friends and relatives: Visit. See what life is like. Spend time with the family. Ask lots of questions.

Here are a few ideas:

  • Tell me about some of the things you are working to teach your child. What do you struggle with? What is your child's biggest recent accomplishment? (Even if it's tiny)
  • What kinds of therapy does your child have? How often? Do you drive there or does the therapist come to your house, and how is it going? What goals do they work on in therapy? How do you think it's going?
  • How are things different when it comes to raising your special needs child compared to your other children?
  • What do you wish other people knew about your lives?
  • Tell me about a typical day with your child. What are the little things that most people take for granted in life that you struggle with each day?

Going a little deeper:

  • How do you feel about the future? What are you hopeful about? What worries you? What scares you? How can I help?
  • Are you getting enough rest? Do you need someone to give you a break? And if you do, would you ask for it or are you waiting for someone to offer?
  • Do you feel supported by our family? Are there specific things we can do, that we don't know about?Is there something you are struggling with, that you wish our family could help you with?
  • What do you need the most right now from our family? Do you feel like we understand what you are going through?
I really hope this helps someone. If you have a child with special needs, remember that you need to explain and help others understand your lives, and be specific about what you feel and need. If you know someone who has a child with special needs, (or you are related to someone) please know that it is safe to assume they are definitely struggling in some way. Raising any child is challenging. Raising a child with special needs is a completely different ballgame. Know that they probably would not tell you what they are struggling with unless you come right out and ask them.

For me personally, most of the time I just need encouragement. I realize that no one else can step in and fill our shoes and care for our daughter like we do. And that's OK. I'm not asking anyone else to give Lilli a bath, or come over and watch her at night for seizures so we can sleep like a normal couple. But having a child with special needs is a lifelong commitment in physically caring for another person, and it is extremely overwhelming at times.

It helps us to keep going when we know when we are surrounded, encouraged, and supported by loved ones.

Tuesday, June 24, 2014

Taking Devices to the Restaurant...and Everywhere Else

We went on a day trip to the town where we will likely be moving, and we took all of our devices with us.

The iphone. The ipad. The mini DVD player.

I think we fit right in with the rest of the public. These days, most people are posting about how we all need to put the devices down and enjoy life. And I completely agree. But... in our case, with Lilli, sometimes we need to use the devices in order to enjoy life together as a family.

With all of the articles out there about how devices are ruining family time and changing relationships, that doesn't even seem to makes sense. But I've explained before that Lilli has a lot of anxiety in public, and we have been through many breakdown, sobbing scenes with strangers staring. I just hate that scene. I want to blend in. I want to have a few moments where no one notices us, and we can just be out in public doing our thing with no stares or awkwardness.

Using a device can help temporarily ease Lilli's anxiety in public, and helps us to blend in. It can help our family have an opportunity to spend time together...to have a conversation with each other. It calms Lilli and I can actually pay attention to my other children, and talk to them without being completely focused on just my one, anxious child.

I've put off posting this. I actually kind of don't even want to put this out there, because of that "mommy guilt" that is so ingrained in all of us moms for various reasons. We try to talk ourselves through things and we appreciate encouraging comments from others...but we still feel guilt over things we feel like we should be doing differently, don't we? It is hard to be a consistent parent and do what is "best" all of the time.

I am so conflicted over this issue. I know there are other moms like me who depend on devices to get through public outings without a scene with their child. We all see it - parents handing over the phone to their children - in waiting rooms, restaurants...check out lines. Is it lazy? Is it a cop out? Is this something that I should be working on - to teach my special needs daughter how to cope and act in public situations without the crutch of a device?

We do work on it. All the time. And most of the time, working on it is just torture to me.

Many other posts of mine have been about this subject - our experiences in public where we are trying to teach Lilli how to cope or behave in different situations. This post is more about how we give up and use devices with Lilli to have a peaceful family time out, for the sake of the rest of us. I'm not trying to justify it, because I don't think it's good, and I still wish things were different. I'm just explaining it. And maybe even working through the guilt and judgement little bit. Let me tell you, if I could go back in time and hand my years-ago mommy-self an iphone to give to a seven year old Lilli during a crying, stressful trip to get groceries, I would do it. And I would tell myself:  just give her the phone, it's ok. Get your toilet paper and your pretzels in peace, it will not hurt your daughter to watch Elmo while you do this, and who cares what strangers think.

On this particular day trip that we took as a family, we traveled to another town over an hour away - a place that soon may become our new home. We spent the whole afternoon there. My husband had to meet with two different people regarding his future employment, so I kept the kids busy. We do not know this town at all, but we are learning our way around each time we visit.

During his first forty-five minute appointment, we all waited in the van for him while it thunder stormed. The kids watched a movie on the dvd player, played on the ipad, played with toys, and ate snacks. Of course I could have tried to take the kids somewhere, but each place I thought of meant a chance of Lilli collapsing and sobbing: the library we have never been to... any of the stores we passed...I saw a KMart and got excited about clearance for a few seconds. But there I was, pregnant with my three children in an unfamiliar town, in a thunderstorm. It is hard enough to take Lilli out somewhere we already know, when it's not pouring buckets. I just mention that I'm pregnant because that makes it harder to run after her, (she almost always runs away from me in the parking lot or store aisles) or bend down and pick her up off the floor when she collapses in the middle of a public place. She's ten and still does the "wet noodle" and falls on the floor, completely overwhelmed when we shop.There is no guarantee that any store will have a cart she will fit in, like those huge carts with toddler seats that I still squeeze her into at Target. (Once again I am reminded that I should be calling every store where we shop, stating my case that they purchase a Caroline's Cart for families like ours. Sigh.)

It might have been fine. Sometimes Lilli surprises me. She might have been happy, and she might have held my hand and stayed with me the whole time. It is happening more and more these days, but it just depends. I was not up for taking that chance.

So we just stayed in the car.

For my husband's second meeting, the storm had mostly passed by, so I took the kids to the park in the drizzling rain while we waited for him. I was so happy for that rain! The rain was wonderful, because everyone else in the community stayed dry at home, and we had the whole playground to ourselves.

I was glad when we pulled into the empty parking lot and I unloaded the kids in puddles. My dread of a packed playground is not about what other people think about Lilli's special needs. It is about me not being able to watch Chloe and Josh through a crowd of people while I focus on Lilli. An empty playground meant I could easily keep an eye on the other two running around while I pushed Lilli in a swing. I rigged an umbrella over the handicapped swing for her, and pushed her for forty five minutes while Josh and Chloe played in the big castle maze. I felt safe because whenever I could not see them, I could just call out to them and hear them answer. Yay for empty playgrounds, boo for me being anti-social. Oh well. (But did we take any devices to the playground? No.)

Another bonus to having the playground to
ourselves in the rain: you can do silly things
like prop an umbrella over your kid on
the swing.


It happened to be my husband's birthday, so we all went out for pizza after his meetings.

And this is where the iphone comes in.

In this small town pizza place, everyone seemed to know each other, and people had conversations with each other from different tables across the room. We loved the warmth and feel of this familiarity. At the table, we relaxed while waiting for the food to come. My husband played tic tac toe and hangman with Chloe, while I colored with Josh and did a sticker activity book with him. We talked. We laughed.

And Lilli had the iphone.

Yes, at the table. In a restaurant. For the whole meal.

She also had just one Lego - her other favorite thing in the world. She listened to Elmo Saves Christmas playing on the phone, a movie she has watched many hundreds of times since she was three.  It was so worth the $6.99 I paid for that movie that has been watched over and over. And when I say "over and over," I mean that literally. Like when it ends, Lilli doesn't want something new. She wants the same exact movie to play again. She hands us the phone so we can start it again for her.

We use Elmo Saves Christmas all the time when we are out in public. I truly think that listening to a familiar movie is calming to Lilli. Maybe it helps her sort through her anxieties in public, unfamiliar situations by focusing on something that comforts her. She has heard the same lines over and over for seven years. Even I can recite every line and sing every song in that movie.

It's not like she is playing through all the levels of Angry Birds. Does that make a difference? I don't know. Maybe not. I just don't know. I have double standards. I wouldn't let my other children use a device at the restaurant table. I wanted to interact with them and enjoy them. The rest of us talked. We looked at each other. But Lilli held the phone to her ear and listened to Santa sing "Everyday Can't Be Christmas" for probably the seven hundredth time. Maybe for her, it's like when I listen to a favorite, calming song. Music can sometimes help us get our emotions under control. We all have different ways we calm ourselves when we are anxious. Some children have a stuffed animal or special blanket. I eat chocolate, vacuum, and listen to a favorite CD. My husband goes for a run.

Well, Lilli watches Elmo and holds a Lego. Some kids with special needs spin in circles or hum. Maybe some anxious kids play Angry Birds. I don't know. This is just how I view Lilli with her device issue right now. Her comfort items are Legos and movies.

My earliest childhood mealtime memories were of eating dinner together as a family; no tv, no radio on. No reading books or newspapers during dinner. Set the table with the blue placemats, sit in your same spot each night, and just talk. I love family time together at the dinner table.

Giving our child a device at the table goes against what we believe in and desire for our family. We really hate it.

But this is what we do, to get through.

I started writing about Lilli's mealtime anxiety. But after a long explanation, I decided it was another whole topic. I will just say that she has always had a lot of anxiety about eating, stemming from choking on food and liquids since birth.

So add to the public place anxiety, the anxiety about eating issues. And we solve all of this temporarily at a restaurant, by handing Lilli the iphone.

At the pizza place, Lilli held the phone to her ear, listened to the movie on low volume, and held one Duplo lego the whole time with the other hand.  She was happy. It felt so nice. So "normal."  So rare. We had a great family dinner together. No one noticed us that much, at our table for five near the wall. It was a noisy, happy place, and Lilli did great. She only tried to crawl under the table a few times, but for the most part, she stayed put, content. Smiling.

I don't care what strangers think about us permitting a device at the table. If she didn't have that device, she very likely would have been crying, shrieking, crawling on the floor, or getting up trying to run out of the restaurant the whole time. We all sat and enjoyed ourselves with no drama. Things are already different, with us pulling out Lilli's foil-wrapped sandwich and her own cup and hand-feeding her every bite while the rest of us chow down on pizza.

Lilli holding the iphone to her ear, listening to
her movie.  We are hanging out by the
 arcade games.
When we were finished eating, I dug for quarters so Josh and Chloe could play the old arcade games in the corner. Lilli still had the phone to her ear, and the rest of us laughed together as Jasen helped the other two play an old Ms. Pac Man game and drive a race car. Lilli could not play the games. But she stayed with us and placed her lego on different parts of the arcade games.

I love it when life feels kinda normal like that for a few moments. It was short lived, because of an embarrassing potty accident that happened a few minutes later as we left. But while it lasted, it was great. We appreciated those moments together as a family.

For others, maybe they think it is rude or just bad parenting to let their child have a device at the table in a restaurant. But Lilli cannot make conversation. She cannot color or play with stickers. She cannot play tic tac toe. She has trouble staying in her chair, and always tries to walk up to other tables and grab strangers' heads and faces. (This only happened once at the pizza place, and I just apologized and quickly led her away). We are constantly putting her back in her seat, telling her to stay put. It's hard for her to figure out what to do with herself. Add to that the overstimulation of noise and activity when we are out in public, and a meltdown is like a weather prediction of a ninety percent chance of  thunderstorm.

But a device will keep her happy. She can entertain herself with that, while the rest of us do all the things that families do when they are out at a restaurant.

If you see us out running errands, Lilli will probably be holding the iphone to her ear. When you see us out as a family in a restaurant, or if I come to your house for a visit, Lilli will likely have a device - if I want to actually have a conversation with you, that is. And you might think that is all she does. If you don't understand, you might even think to yourself how it is such a shame and it is not good for a child to have so many movies and devices. And I would agree with you. You might even go as far as to think to yourself that surely there are alternatives, and that we should teach her to play with something... or just find a toy that she really likes.

If you think that, please, I beg you to come to my house and figure it out for me. We have tried many things over the years, and yet here we are.

I am not justifying giving a child a device.

I know it's not good. I know about all the articles that say how bad it is for children to have devices or movies for a certain number of hours per week. And we are working on teaching her to try other things. But there are no articles that tell me how to have moments of quality time as a family, social time with friends, or normalcy in public with an anxious child who has frequent inappropriate public behavior, cannot speak, and cannot entertain herself with typical child activities.

We had a great visit to that town, and a great day. While I was pushing Lilli on the swing at the park, I asked her what she thought of this town.

"Do you like it here, Lilli? Do you think you'd like living here?" I asked her in the rain. She put her hand on her neck - her gesture of wanting to say something, but can't - and she smiled. I'll take that as a yes.

Maybe this move to a small town will be the best thing that ever happened to our family. I really hope so. I would love to go back to that pizza place and have that experience again. I'm so thankful for a great day. And I'm so thankful for these dang devices that I love/hate, because they help us go out together and enjoy dinner out as a family.

If you ever see a child at a restaurant with a device, please don't judge the parents. You don't know the reason behind why that child has a device. It might seem rude to you. It might seem like bad parenting. Or lazy parenting. And maybe in some cases, it truly is.

But that child might be my child. And bad parenting or not, this is our way of coping in public.

This is what I know: everyone in the restaurant was able to enjoy their meal that night, including us, because we gave Lilli a device. And I truly hope that one day far off in the future, I might write and tell you that we went to a restaurant and made it happily through a meal with no device at all. Until that day, if it ever comes, we will charge every device we have, and pack them all.

Thanks for understanding.







Sunday, June 8, 2014

Spying Neighbors and T-Shirts About Autism

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Because he was.

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

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

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

Finally, the car slowly pulled away and left.

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

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

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

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

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

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

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

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

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

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