Giving up Homeschooling, and Unraveling from FB posts (Weeks 3 and 4 after moving)

The Third Week.

The snow melted, and the phone calls began. I spent hours on the phone.

Days of phone calls. Note-taking. Websites. Forms. Applications.

Now that I am posting this months later, I can update and say that I spent four solid months doing this every single weekday. The process is quite unbelievable for moving a special needs child to a different state. I have spent an enormous amount of time on the phone. I spent at least 2-3 hours every weekday for over a month solid, making phone calls about Lilli. Then it tapered off to about an hour a day, or two.

Really.

I'd been through all this before, so I thought it wouldn't be so bad.

I was wrong.

Anyone who has a child with special needs can sympathize: when it comes to switching to a new state, nothing can be more frustrating than dealing with insurance, government and state agencies. Every state handles things differently. There are different programs, waiting lists, and information is scattered and hard to find. In summary, it's kind of like this:

1.make phone calls (endless annoying automated systems with no people to help and being put on hold forever or transferred from person to person)
2. take notes on what those people tell you to do.
3. call the people those people told you to call, and re-explain to them what your situation is with your child.
4. Those people tell you something completely different that conflicts with what the first people told you, and you have to start over.
5. Repeat steps 1-4 about five more times. Or more. Seriously.


Josh and Chloe were starting to get stir crazy, from two weeks of being off schedule from moving, and no pre-school for Josh. They fought and chased each other through the house trying to hit each other.

Lilli watched movie after movie as I sat at the table with stacks of paperwork spread out and scribbled furiously in a notebooks while balancing my phone with my shoulder and holding the baby on my lap. Unbelievably, I was able to get Chloe to do some homeschooling work. But not too much.

I unpacked more. I did more laundry. I was desperate for organization, all the while knowing that we would not be "organized" for many months.

Everyone was off schedule. I felt very stressed, discouraged, and homesick for the way things were before.

One agency I called, I spoke to a woman and explained about Lilli. I told her what Lilli had qualified for in our previous state, based on her disability. She told me nothing like that existed here. Nothing? Nothing. I hung up and cried. I wanted to move back to our old state. (Several weeks and phone calls later, I found out she was wrong. Very wrong.)

One week later, after many phone calls and tears, I had to call and postpone Lilli's appointment with the new neurologist here. I felt panicky about her seizure medication, prescriptions running out, and getting new health insurance coverage. Transferring things over, like her medical equipment and her specialists, and her therapies, well that was just not easy at all.

I spent hours online researching, trying to figure things out.

My phone rang, and it was a woman who had randomly overheard a conversation by the nurses in the new neurologist's office, about how I had to postpone the appointment. She said, "I think I can help you. Tell me about your daughter."

Like a superhero, she swooped in and saved me. She told me, "Yes, I am familiar with that program Lilli had in your previous state. We have that here. It just has a different name. Here is the name and number of a person you can call who knows what they are talking about. He will enter information about Lilli and get things rolling."

Finally.

Next came many appointments and stacks of paperwork including two 20 page applications and a stack of other forms, and countless more phone calls. It wasn't any easier, but at least I knew what direction I should head now.

And I didn't need to move back over state lines after all.

The Fourth Week

I reached my breaking point. I could not do all of this anymore. Something had to give.

I had to give up homeschooling Chloe.

In a moment of peak frustration, feeling overwhelmed about everything, I unloaded on my husband when he came home for lunch.

"I can't do all of this. This is no way to live," I told him.

All of that time on the phone, filling out forms, and searching online, I felt like I was ignoring my children and Chloe's schoolwork was not getting done. The kids were fighting and Lilli was crying and floundering. I had to figure out everything for Lilli, and it was a full time job. I had done a much better job homeschooling Chloe with a newborn right after my c-section. This was crazy.

"I'm enrolling Chloe in school," I said. And Chloe was fine with it.

She was ready to go and meet some friends and do something different.  I think even she sensed that Mommy was overwhelmed and the situation wasn't good. So two days later, she started school. On a Friday. It's a tiny school, a free public charter school. On her first day, we pulled up and everyone already knew her name and welcomed her warmly.

The campus where the school meets is gorgeous. I pass two lakes as I drive through the car line. Chloe gets art twice a week, music twice a week, and even a dance class. She made new friends right away, and she was thrilled.

I teared up after dropping her off that first day. At least I could feel good about this. It was a good school. She was happy to go. I loved homeschooling her and we did do a lot of great things this year.

But now things have changed. And it's OK. I am doing the best I can.

There was a strange small nagging sense of failure I had trouble shaking, about giving up homeschooling. I cannot really explain it. It was like a dream dying. It was a tiny bit akin to a massive pinterest fail. It was like I had moved out of one camp (the public school camp) into the homeschool camp, and then left that camp too. Like I had pushed ourselves away from both sides, disappointing others and inviting silent judgement from many. This sounds all so dramatic (which I am) but it felt a little like we had good friends in two different cliques in high school, but now we did not belong to either one.

I still believe in the amazing, wonderful, powerful experience of homeschooling. I wish I could do it. I did the best I could. I think I did a pretty darn good job for much of the time. I learned more about what Chloe actually knows and can do than I had ever known before. We spent more quality time together than we ever had. It was not all roses, as we had many moody moments together. But I cherish the entire experience we had. I am glad we did it. I just wish I could have kept homeschooling her, and doing it well. I could not do it well with a crying child in the background of every moment of our day, on hold with the insurance company and distracted by a mound of paperwork.

Maybe another mom who used to homeschool and had to give it up understands how I feel. I just never saw it coming - that I would not make it to the end of the year. I loved homeschooling so much, but to do it well, it is very hard. I had a baby right in the middle of it. Still, we made it through. Our tumultuous time of moving had been tough, and I thought we would get through that too. We almost did.

What I could not handle was Lilli, and the extreme stress that piled on.

I pretty much had a meltdown about what was happening with Lilli, and knew that life could not continue like that for all of us for even one more week.

I wondered if I had done a good job. I didn't have to wonder for long. Chloe took a placement test and scored very high. I felt relieved. Her new teacher was very loving, and not at all like "What kind of parent are you, moving at the end of the school year?" She was extremely kind, loving, and encouraging. She loved Chloe instantly. She also never gave me the feeling of "Oh, you homeschooled her...huh." She was pleased with what Chloe already knew.

So it was done. Chloe went to school. Next it was Lilli's turn. Then I would find a preschool for Josh.

More calls about schools for Josh, and several more meetings with the school about Lilli. It was a busy time, and my stress level continued to increase even though we seemed to be making progress.

My Facebook Mistake

I made a big mistake. During my "down time," which was when I was sitting and nursing the baby, I got on Facebook. I read article after article. I don't know why I do this. I am not the type of facebook user who trolls other people's pages. I read the articles people post, and the related articles, and I read the comments from other people who also read the articles.

This was not a good thing for me to be doing, because I ended up reading a bunch of articles that had to do with autism. Some were about special needs children who were abused by their teachers at school and, thankfully, caught. Some were about studies and research done on people with autism. I read comments in one article and could not believe the negativity. The bashing. The meanness. I sat and read through dozens, maybe a hundred comments. Heaping negativity upon myself by simply reading it. Obviously none of those commenters has a child at home with autism, I thought. Not only was I overwhelmed with the stress of all of this other special needs "stuff" I had going on in my life, I was reading negative comments by dozens of strangers who thought it was ok to publicly insult parents of children with autism.

In my post about the first week of our move, I wrote about how I was reaching my mental breaking point. So ridiculous, but facebook pushed me even farther to losing it. I had to take a break. Social media can be great. It also can be terrible.

I guess I'm telling you all of this because I know many other people are affected in similar ways.

Feeling stressed? Don't get on Facebook. You will feel more stressed. Unless you strictly watch funny animal videos.

Feeling overwhelmed? Stay off Facebook. Other people's negative posts will overwhelm you even more.

Feeling depressed? Avoid Facebook. More doom and gloom articles on there than the evening news.

Maybe it's just my feed. Maybe it's just how Facebook works, that the more certain articles you look at about certain subjects, the more Facebook assumes you want to read even MORE about that same subject. So I guess I got trapped in a Facebook hole of depressing, stressful posts and it made matters worse for me.

I am still struggling with this issue. I am not sure how to change my feed so that it comes up all kittens scaring each other and jumping three feet in the air, and funny dogs eating ice cream cones in one bite. Maybe someone can give me advice on that.

Or maybe, maybe, I should just simply stay off Facebook in general. But I would miss my friends. Facebook has ease to it. I need ease in my life. I cannot write emails to each individual friend all the time. I rarely talk on the phone now. I use "speak to text" when I text. Facebook is easy. It's a love-hate thing, I guess. You have to take the good with the bad. But when the bad starts to overwhelm me, I have to take a break for awhile.

The good news is, the break helped. There is such a thing as a Facebook diet. It's like eating too much junk food. Take a break from it for awhile and it helps.

The Second Week: From Elementary to Middle School

The Second Week. March 2015

Moving to another state is not an over night process. At least not for this family. We have been back and forth, back and forth. The second week we were here, we were still driving back. A lot was happening in both places. We drove back for dance class, for Josh and Lilli's last days of school to say goodbye to their friends, and getting our old house ready to rent out. We celebrated my mother in law's birthday. I had my first meeting with the new school district about Lilli.  Lilli had two more seizures. I unpacked, cleaned, and did mounds of laundry, catching up from not having the washer and dryer for just a few days.

Lilli's last day of school at her old school was on Thursday morning, after we'd already been at our new house for over a week. She had missed her last day two weeks before, because school had been cancelled for days from of all the snow and ice. Josh had missed being student of the week and taking his birthday cupcakes in to his class because of the snow days. Lilli's class had all made things for her and wanted to see her to say goodbye.

Even though we had already moved away, I felt like it was important for both Josh and Lilli to go back and see their classmates and teachers one last time. So we made the trip back, with cupcakes for Josh's class in a cooler.

The School Goal

Before school that morning, I get Lilli dressed in one of her coolest Justice outfits, with her boots. I do her hair, and get her little backpack purse ready that she wears with her ipod inside and earbuds, in case she feels anxious. Sometimes Ms. Leslie will put one earbud in for Lilli to listen to her favorite music, and it calms her down. There are also her favorite Legos in the purse - the ones with windows.

As we drive to the school, I give Lilli my usual pre-school pep talk.

Just enjoy being there. There's no pressure. Just smile and be happy, and hug your friends. Ms. Leslie will come and get you, and it will be just a short visit. I'll wait out front. You look adorable. Have fun. Tell Ms. Leslie with your NovaChat if you have to use the bathroom. I love you. It'll be great.

Lilli sits in the back of the van, silently. I have to do all the talking because she can't answer me. It makes me feel like I talk too much. She looks out the window. I wish I knew what she was thinking. If I had a dime for every time I think this to myself. Maybe she appreciates my pep talk. Maybe she wants me to just be quiet already.

When we pull up, Ms. Leslie comes right out to meet us. I tell her that I'm a little nervous because another snowstorm is supposed to begin in the next few hours, and I need to get on the highway soon to drive the hour and a half back over the mountain to our new home. I help get Lilli out of her seat and out of the van. She starts to make happy sounds, and hops with delight at being back at her old school with her favorite teacher. She's all smiles and excitement, awkwardly jumping up and down. She flings her arms around Ms. Leslie and squeezes her tightly. She and Leslie walk together into the building, and I watch Lilli's back before she disappears through the double doors. Lilli is gloriously happy. She is walking her happy walk.

I haven't seen her this happy since before we moved. After a week of crying, it is like the sun has come out from behind the clouds. It's like a Lilli rainbow. It makes me so happy, I want to cry. But no crying from anyone today, this is a big day.

This is what I want for her, I think. This. Being happy to go to school and see friends. I want her to be happy. I want to see her bounce into school, all smiles like this.

I decide right then and there, that this is my new goal for Lilli. To be happy to go to school. I don't even care what they do in her new school. I want her to be happy again.

She comes out later, still bouncing and all smiles. Leslie says she had a wonderful time.

I drive my four children onto the highway, anxious to beat the snow, and Lilli is on cloud nine, smiling and laughing in her carseat on the back row. I keep smiling at her in the rear view mirror. She had a wonderful day. When we get home to our new house in the mountains an hour and a half later, we go through the little gift bag that her teacher and classmates gave her. Inside are handmade cards from all twelve classmates, and a bubble kit. I sit at the dining room table and read every one of the sweet cards out loud to Lilli and her dad. We both make a big deal out of it. Chloe makes a huge deal out of all of her sister's cards. Lilli puts her hand on her neck like she has so much to say, over and over, and smiles. She doesn't smile at us, she smiles at the carpet. But she is smiling at what we are saying. She is sitting on the floor, looking at her legos. She is so super happy.

I tell my husband about the day, and how I want so much for Lilli to be happy going to school here. I need to prepare what I'm going to say at the meeting about Lilli the next morning, and we talk about it.

We agree that this school meeting will be different than any other we've ever had.

Meeting at Lilli's New School

The next morning, I leave with purpose. But anxiety is notably absent from the things I typically take along to a school meeting about Lilli.

The meeting is unexpectedly relaxed. They offer me a cup of coffee in the cozy, creaky old schoolhouse building that had been turned into offices. There are hardwood floors and old clanking radiators. I find the restroom and feel like I am walking straight into 1960. In the bathroom, there is an ancient physician's scale, and wheely carts with long-unused overhead projectors parked in a corner used for storage.

It feels oddly comfortable in this warm old creaky school building.

I had thought a lot about what I wanted to say. In the past, I would have shown up to a meeting with all kinds of paperwork, notes and goals, and prepared proof of all the things she can do. Friends have seen me with all of my notes and prepared requests. I would have had an "I'm here to focus on all the many things my daughter needs and prove what she can already do" attitude. But this time around, Jasen and I had decided we just wanted one, simple thing for Lilli.

We wanted her to be happy. Happy at school. Just happy.

I never thought I would be at this point, after all the goals we have been striving for over the years to get her to communicate and function independently. In past meetings over the years, I have been organized with binders full of information, lists of goals, videos of Lilli's therapies on my laptop, and a serious, let's aim for the unbelievable attitude. Not this time.

I told the nice people in our new school district that this was what we wanted.

Simple happiness.

I told them about Lilli's last day at school, how I had taken her to see her friends and say goodbye, and how she looked to me as I watched her happily walk into the building with her backpack on. That we want that for her here.

The goals, the therapies, the academics, the hard work with trying to communicate, to use a communication device and type words and sentences...that will all come later.

Let's work on having Lilli simply go to school, meeting new friends, and being happy first.

I tell them about what Lilli is like.

I take out pictures of Lilli at school and pass them around. They oh and ah about how cute she is. I tell them the awesome things I love about her. I tell them how smart she is, and how amazing she is.

These are pictures are the pictures I showed them. They pass them around the table.

I take out a picture of our family. I want the new people in this new school district to get a good sense of who we are. I don't want Lilli's crying to obscure how awesome Lilli can be. I want her to make a good first impression, but I worry that it won't go well. So I show them pictures of her being happy at school and happy with our family.

And then I tell them that she will likely feel anxious and cry in the beginning. Because she has been crying since we moved. I prepare them for the worst. I tell them that she might scream and sob and throw herself on the floor. That she might push and pull on people. That she might not do anything academic for anyone for a long time. And that I'm okay with that. Because we have decided that after this awful past fall that she had, we do not want to pressure Lilli. We want her to get comfortable in her new surroundings and feel relaxed and positive about coming to school first. The other stuff will come later.

They tell me that they are prepared for meltdowns, that they will not be fazed by it. That they have seen it all. They are excited to meet Lilli. We all decide that it would be better for Lilli to start going to the middle school right away, rather than spend April and May at the elementary school only to have to transition to the middle school in August anyway.

The school nurse is at this meeting. She is amazingly comforting and thorough. She is loving and familiar, like a dear aunt. She tells me not to worry. We talk about Lilli's seizures. This school district is so very different than the last one, when it comes to seizures. Everyone has been trained on what to do. All of Lilli's teachers - the therapists, the teacher assistants, even the gym teacher is trained and prepared to jump into action if Lilli should have a seizure. There are other students in Lilli's class who have seizures. Everyone is prepared. The director of special education takes me over to see the middle school and meet everyone there. I meet the principal first. He is extremely laid back and friendly. He is not at all intimidated about Lilli's special needs. He is welcoming and kind, with a good sense of humor. He also tells me that he is trained to help if a student has a seizure.

I feel better already about this. I see the classroom, and I meet the teachers and students. As the special ed director, the principal and I all enter the self contained classroom, some of the students come over to greet us.

My first impression: these kids are huge. 

My immediate next impression: these kids are awesome.

I meet a boy who has autism, who comes right to me and shakes my hand and says, "Hi, how are you?" They tell me later that he has learned to do this because he used to try and hug everyone. And not everyone wants to be hugged when they first meet someone. I think about Lilli. How she tries to hug and literally climb up certain people to throw her arms around their neck - practically into a headlock - even strangers sometimes if she likes something about them. I think about how Lilli needs to learn to shake hands when she meets someone.

I really like this kid. Lilli will like him too.

I like this class already. I don't realize it at the time, but another boy who comes over to greet me, is my next door neighbor. His teacher tells me that he loves legos. I think he is absolutely adorable, and I know Lilli will like him.

I see friends in this class for Lilli. Another girl is in a wheelchair. She can't talk. She has seizures. She flaps her hands and makes a loud excited noise. I tell her hi, it's nice to meet you.

Lilli will have a lot in common with these kids. She will fit in here just fine, even if she is tiny compared to these kids.

A few years ago, I might have had nervousness about Lilli going into this class for different reasons. Now, I am looking forward to seeing how this all turns out. Even though there is an absolutely huge eight grader that will tower over Lilli. (He told me a knock knock joke that didn't make any sense when I first met him. I liked him instantly.)

Even though she might not love everything about this new school, I think she will like a lot of things about it.

Later, the principal and director of special education talk with me out in the hallway. I confess that I am worried about how big all the kids are, and how tiny Lilli is. They assure me that this is middle school. Kids come in starting out small, and then they have growth spurts and get much bigger. I guess I had forgotten all about that growth spurt stuff.

Lilli is little. She is Chloe's size, only skinnier, and Chloe is eight. The biggest boy in this class is taller than I am. He's a big kid.

This is going to be interesting.

I come home and tell Lilli all about her new school and her teacher. She smiles at the carpet and puts her hand on her neck.

I think she is ready for this. I might be ready for it.

I guess this is what happens when your child starts to grow up. Middle school happens.

Yikes.

The First Week: "It Will Get Better."

The First Week. March 2015

Her constant crying is heartbreaking. I feel sorry for her, I feel sorry for me, even though that's so awful of me to have a personal pity party. You might think, geez girl, it’s only a little crying, just ignore it. But has been several days straight of this. For hours at a time, everyday.

Just...straight crying.

Sometimes it's sad crying. Sometimes it's angry crying. 

It is wearing on me mentally. I can figure out what is going on if it's one of my other children crying. The baby's easy. Change him. Nurse him. He's good. Josh and Chloe? A hug for a boo boo. They can tell me what is bothering them. Is it a crying tantrum? I can easily ignore a tantrum from my other children. Just walk out of the room.

But not with Lilli.

As always, this is different. It's not a tantrum. It's so much emotion wrapped up into one small outlet. She cries and hands me a movie case. Lilli cries because she wants a movie. But there is much more beneath the surface. The movie is just her way of escaping. She is trying to find her place here in our new surroundings. New house for her to navigate. The furniture is haphazardly placed temporarily. Stacks of boxes in every room. She is tripping and climbing around things, and trying to figure out what to do with herself. She might be crying because she is completely thrown off in every way from this move. She misses her old familiar house and things.

This is all so new.

She might have a million things to say, like, I don't like this house. I don't know where anything is. I miss our old life, our old house. 

Her crying is unnerving to me. Lilli has always affected me differently than my other kids. I cannot figure her out, even after all these years. She cannot consistently, effectively communicate to me, even after everything we have tried. It's still a guessing game much of the time. Sometimes I just don't know what she wants to tell me, and her frustration can completely unravel me in mere seconds.

I have learned over the years that I need to explain things to her. It took me way too long to learn this. When you have a child who does not speak, you sometimes lose sight of how much they need you to explain everything to them anyway. Just like any other kid. And also, it's hard to explain something to someone who cannot talk back to you. It takes some getting used to. You don't know if she's listening or if she understands, if you're insulting her because she already knows, or if she is even more confused and has questions she cannot ask. I explain something as I drive in the quiet car, hearing only myself talk, and then...silence. No feedback. Never know what she thinks about what I just told her.

I give Lilli pep talks. I tell her things will get better as we unpack and get settled and learn about our new town... that it will not always be like this.

I tell myself this, too.

I am strong, but only in certain situations. And only for a certain length of time. After awhile, I start to break down a little myself. I really think anyone would if they were in my shoes.

Lilli is not handling this move well at all.

During the crying, (and in-between unpacking), I try different things. I spend time with her, I talk to her, I try to help her. She keeps crying. I ask her questions that she cannot answer. She gets mad and pushes me. Then I try ignoring her.

Nothing works.

I think questions to myself. But they do not have question marks, because I know that there are no answers.

Why.
What should I do.
How can I help her.

What if it’s always like this.

She is completely lost. No schedule. All I can handle in this mess is feeding the kids. Everything is a wreck with piles everywhere.

I know she is bored. She’s unhappy. She's even angry at times.  This is not what she is used to, and her routine is totally thrown off. Routine and predictability are important to Lilli. And a familiar place, with familiar people coming to see her, like her teachers and therapists.

She has none of those right now.

Little things make her mad. Like the fact that she can't turn on the light switch in the new bathroom, because it's a dial...from the dark ages. Well, no, just the 60s.

The bathroom light switch. Really?

She doesn't know where the light switch is in her new room, because it's behind a huge tower of stuff.

She trips over something in every room. I try to clear paths between boxes and piles, but there is just so much. I try to concentrate on unpacking one area, and it makes me just want to sit down and cry. I try a different method of unpacking randomly as I go from room to room with the kids. I try getting Chloe and Josh to help me unpack.

No, that doesn't work.

I have been unpacking and cleaning, and my husband is working. I don’t know where everything is, and the disorganization and stacks of boxes are making me crazy. I cannot pay enough attention to my four, differently-needy children right now. I'm trying to make this house a functional home. Thankfully, Josh and Chloe play together and entertain each other for hours. The baby sleeps in the swing in-between feedings. But Lilli has only so many things she can do for self-entertainment. We've got movies, music, and legos. That's about it right now. You think, well that's okay. That sounds fine. But come to my house and tell Lilli, "Well...you've been watching the same Sesame Street movie over and over for about six hours straight now, it's time to take a break and turn it off for a little while."

You'd see.

It's just not the same as with Josh and Chloe. I can send them off to do any number of things. Unpack this box. No, no more movies right now. Put these books on that shelf. Unload the dishwasher. Okay now go outside together and run around in the yard. I'm so thankful they have each other and they play so well together.

Lilli doesn't play with them. Lilli doesn't know how. Chloe tries to play with Lilli, bless her. Josh is still figuring Lilli out. He doesn't understand.

Lilli has been pushing me a lot lately. As in actual, physical pushing. She hardly ever does this. She will pull us to things she wants, but pushing, well, that's different. Pushing comes when she is extremely unhappy and frustrated. Pushing is the lowest, simplest way of her telling me that she wants something or does not want something. It used to not be such a big deal, because she was little. We’ve always said, Don’t push, Lilli. Use words.

Which isn’t really the right thing to say, because she has no words.

Now she is bigger. She is eleven. She can practically push me over onto the floor if I don't see it coming. Her communication device can only do so much. When she is crying mad, she doesn’t use it very well. I’m sure if I were having a complete sobbing meltdown, I would not be able to type or text very well.

She didn’t use to push this much. It’s increased in the last few months. Really since the new homebound teachers and our difficult fall began. And now the move. She has so much frustration, and pushing is a way she uses to get us to “listen” to her.

Whatever it was that made Lilli melt down into anger and tears on this particular morning during our first official week in our new house (and I really do not know), our day begins horribly, with angry crying soon after everyone wakes up. Maybe she just is mad that we are still here in this new place. And she just wants an old favorite movie to block out all the newness.

I don't know.

Chloe comments, “This sound, I’ve heard it all of my life and I hate it!” The sound being the screaming and crying. There is nowhere to get away from it in the house. I am determined to not give her a movie the second she wakes up. We have tried so hard to cut back on her screen time. We know it isn't good for her.

The crying continues for an hour and a half. Throughout that time, I put various music on to try and calm her down, make a batch of pancakes for all the kids, and try to clean up the kitchen. She follows me around, crying and pushing me. I walk her back to her room several times, thinking she can play in there and calm herself down. Her sobs escalate into screams and growls of anger. I know if she could talk, she would tell me off.

It is unnerving and I feel like I might lose my mind.

Finally, calm. She comes to me with the Nova Chat, her communication device, silently held out to me. I turn it on for her. It has a tiny button on the top, and she still cannot turn on herself, I dislike that very much. It takes away her independence. She tells me she wants to watch Learning about Letters, a movie she has had for at least six years and has watched hundreds of times.

I give her the movie.

I give it to her because it has been a long time, for Lilli. An hour and a half is a long time for her to try and calm herself down and do nothing but wait. She is now calm, and she is finally asking for it in a nice way. I want her to learn to ask for something without pushing, screaming and crying. This is much more difficult than it seems. It takes extreme patience and consistency.

I am not very good at it.

It is much easier to just give her a movie and get her to stop crying. It is much harder to wait until she finally gets through all the emotions (which can last for a long time) and comes to me silently, calmly with her communication device to ask for a movie.

Some might think, Sheesh, you just moved, your lives are all turned upside down... just give her the dang movie, don't make her wait and cry.

But I would respond, you do not know all there is to know about this situation. When she woke up and angrily started crying and pushing me, I could not just give her a movie. Wouldn't that teach her that all she has to do is cry and push me, and she gets a movie for that behavior? And trust me, I mess this up all the time.

All the time. ALL THE TIME.

Some days I am consistent and strong. Organized. I have plenty of caffeine pumping through me and I've had time to wake up and get mentally prepared. Other days I am surviving, and I give in because I am overwhelmed.

It is a difficult, daily struggle with Lilli. If I let her, she would watch movies every second of her entire life. We are always trying to get her to try to do something else. It's not easy. It's not at all like when I tell my other kids to turn it off and go do something else. Lilli's not independent like they are.

Her movies are comforting to her. Most of the time, she doesn’t even sit and watch it. She just wants it on in the background, kind of like when people put on the radio. Many times she begs for a movie, and then as soon as I push “play,” she walks right out of the room. We did not understand this about Lilli for a long time. I think it is the familiarity of it…the fact that she can probably recite every line in her head, she knows what is coming next in each scene. Maybe it’s like listening to a favorite song.

It is predictable.

Unlike her entire life right now with this move and all of the changes.

She plays with her Duplo legos on the floor next to the movie. She can’t really make anything out of the legos, she just places them differently all around on top of pillows and blankets and books. In the past year, she learned to put two square Legos together. But she still can’t build anything with them. Not yet. I hope she will one day.

Anyway, that was Monday.

The next three days were the same.

Crying. Screaming. Pushing. Frustrated. Movies.

I am so discouraged. I didn’t know this transition would be so difficult for Lilli. I am writing this down because I hope that one day I can look at it and say, Look, see? It got better. It started out pretty tough. That first week? Wow, glad we won't have to go through that again. But it got way better.

I hope that’s true.

We officially moved a week ago, on a Friday. 

We moved on one of the coldest days of the year, and when we arrived, our steep driveway was covered in a sheet of ice. The U-Haul truck, that my husband slowly backed down the driveway, got stuck. It skidded on the ice backwards crookedly into a stump in the yard, and there was no going up or down. On Saturday, he and the friend who helped us move went to three different stores to find rock salt, which was sold out almost everywhere. They were out there with the one shovel we had, and the rock salt. They got the U-Haul out, but had to put the washer, dryer, freezer, and piano up on our carport. They had to stay there until the ice melted and we could find a way to get them all back down the other driveway to the lower level of our house. (As I write this, the piano is still out there. One of these days we will find someone who will be willing to help us move it down the driveway.)

Stump behind the back right tire. 

We plugged the freezer in through the living room window and stuffed a Superman beach towel in the window crack. With all these appliances and a piano on the carport, it looked really trashy. We sure were glad to be making such a good first impression on our new neighbors. All we needed was a couch out in the driveway and a few six packs.

Then it began to snow like crazy. Beautiful thick fluffy flakes fell from the gray sky for hours, and made my new neighborhood peaceful and still, covered with quiet whiteness. Chloe and Josh were ecstatic to go out in it. They spent hours in it, sledding and building snowmen.

On Tuesday morning, I felt inspired to take Lilli out in the snow. I hoped she would like it, but I can never predict. Josh and Chloe had already been out in it since breakfast. When my husband came home from work on his lunch break, I left the baby inside with him and bundled Lilli up and took her out in the snowy front yard.  

Two children are happy, one is not.
 This was a brief moment of "I'm not miserable, but I'm not exactly thrilled about this."

She was quiet for a moment as she checked it out. Then, she began to cry and walk to the front door.

 I said to my husband, “Why don’t you take her down our driveway on the sled, maybe she will like that.” At least our steep icy driveway was good for sledding.

Josh and Chloe. The driveway is under there somewhere. And that stump.
 At least the U-haul is gone.

She didn’t like it.

I stood at the bedroom window with the baby on my hip, taking videos of all of them sledding down the hill.  Lilli was silent, sitting in my husband’s lap as he sledded with her on the saucer. When they got to the bottom, she cried and walked to the house. He looked up at me in the window and put his arms up in the air like, I tried.

Lilli hates cold weather. So we didn’t take her back out.

After my husband went back to work, I put Lilli in bed for a nap. I positioned the video monitor on her face, and went to take care of the baby. I was watching Josh and Chloe play with the neighborhood kids in the front yard, out in front of our big picture window in the living room. Chloe came running across the lawn toward the door, crying. She’d been hit in the face with a snowball. I hugged her and gave her a little love and a pep talk, and sent her back.  As she walked away, I glanced at the video monitor, and became filled with dread. I turned and ran to Lilli in the bedroom.

She was having a seizure.

She was okay afterwards, but I was not.

Later that night, after my husband got home from work, I drove out in the snow to get a box of diapers from Wal-Mart. Growing up in the north, it is not intimidating for me to drive out in a little snow. No one was on the roads, even though they were fine. I had the store practically to myself. I wandered in the eerily empty Wal- Mart for a little too long, carrying my box of diapers and looking for nothing else, really. Just shopping for calmness. A moment to myself.

When I pulled back into my white driveway, I turned off the engine and just sat there. Not really thinking about anything. Just feeling drained. From the moving. The unpacking. The boxes everywhere. The constant crying. The seizures. Trying to homeschool Chloe in the midst of all of this. (What am I, crazy?)

We will get through this.

When I finally got out of the car, I stood there and looked up at the night sky with the snow drifting down onto my face. I looked at my warm, lit up house and saw my children through the large picture window in the living room. I wasn’t quite ready to go back in yet. I saw Chloe chase Josh by the window. He must have taken something that belonged to her, again. Lilli came into view, stepping awkwardly over things that were scattered all over the floor. Her movie was playing on the tv. My husband was in our not-completely unpacked kitchen, trying to start dinner while keeping the baby entertained in the exersaucer.

I took a long, deep breath and looked up at the branches of the trees silhouetted against the twilight sky. Fluffy snowflakes landed on my face. I wanted to stay out there longer, in that peaceful night snowfall. I didn't really have any deep thoughts. I just wanted to be still.

In those rare moments of being still... in the quiet, I remember that God sees me. That he sees all of this. That He knows this is not easy. But that He alone is the One who can give me hope. And He is there. Always.

For a few brief seconds, I close my eyes and remember this.

I do not feel better. I do not feel renewed. I still feel drained.

But I just remember.

Truth is the same whether you feel it or not. We need to hang on to the knowledge of truth through the rough times, when our dark feelings get in the way. God brought us here. He has plans for us here. I remind myself of these things.

Chloe and Josh building a snowman.

This first week has been very emotional and stressful for me. Aside from the unpacking and complete mess, I'm nursing a baby who is completely off schedule from the move and not sleeping through the night. Lilli’s constant crying and frustration is unraveling me. I feel lost with her. I don’t know what to do. Maybe this is how parents feel when their babies have colic. It’s draining. It’s depressing. It’s frustrating. It’s exhausting in every way possible, physically and emotionally. I feel like I need someone to swoop in with a superhero cape and save Lilli from being so frustrated and unhappy. I knew the move would be tough, but I was thinking only about the actual move itself. As in, the heavy boxes and stuff.

I hadn’t thought about how Lilli would cope with everything being new.

All I can do is hope that it will get better, and I will look back on these days and be glad we got through it.

This was the night our heater broke and we had to lay mattresses down, find every blanket we had, and sleep in the kitchen, using the oven to keep warm. Had no firewood to use the fireplace, but even if we had, it would've been a tough decision because smoke triggers Lilli's seizures. Anyway we have heat now, so that's a good thing. My kids will remember this night as a "cool" slumber party. Note the piles of boxes around us, 

Smack in the middle of this first week, my redheaded little four year old boy turned five. We pushed every other thing going on out of the way temporarily to bake him a chocolate cake with Skylanders on top, and wish him a happy fifth birthday. When he remembers this time, I want him to only remember that he had one of the best weeks of his first five years of life, sledding down a huge hill with his sister for hours on end all week long in his new neighborhood, with new friends that live right across the street.

It doesn't matter that I am extremely stressed, and kind of homesick even. Chloe and Josh are ecstatic to be here. They are in heaven, loving everything about being in this new place. They are not complaining about moving. They are excited about their new rooms, their new friends, the new house, and the tons of snow. This was such a good change for them.

I desperately want it to be a good change for Lilli. It is difficult for her right now, but there must be something good for her in this new town. Everything is still unknown for her right now, with school, therapies, and who she will meet here. Will she meet new friends? Will she be able to go to school? We have many questions to answer in the next few weeks and months.

I remind myself of what I wrote in February, that I believe it will be better for Lilli. That there are surprises waiting for her in this new place.

The unknown in life can be scary, yes, but it also can give you hope for something good. For something different. For new chances. In a few months, I want to write these words:

Look, see? It got better.

The New Folks in Town

We have been here in this new town for almost four months now.

It is a very small town. I am torn between posting about it and keeping things move private now, because it is so small. If anyone in this little town begins to read my blog, I might feel like I cannot share things openly like I once did.

Small towns are different.

My husband and I met in a small town fifteen years ago. I am quickly being reminded of small town talk as we get settled in here. Everyone knows everyone. Everyone is connected in some way. In one meeting I had with Lilli's new teacher and several therapists, we were wrapping up the discussion and I said, "If you want more information about Lilli or you need anything, feel free to call me." And one of the therapists joked, "Oh, well, I know where you live." And another therapist said, "Yes, we all know where you live."

I smiled and laughed. We all laughed. It was funny, but inside I was really thinking, What?! How do they all know where I live?

It's been a few months since that meeting.

Now I know. Everyone here knows where everyone lives.

We are the new family in town. People know who we are. Our neighbors are connected to us through school or through my husband's practice. Strangers have come up to me and asked me if I am Jasen's wife. They recognized me from my picture at the office. Phone calls I have made for various reasons have surprised me with reactions of people already knowing of us. One call I made about enrolling Josh in preschool, when I told the person our last name: "Ohh! I know who you are!" I visited a church one Sunday (Jasen stayed home with Lilli as we have to take turns visiting new churches right now). I snuck in late and thought nobody saw me. I was wrong. After the service I was surrounded by six people who already knew who I was. "Excuse me, are you Dr. ________'s wife? I thought so!"

It's almost kind of intimidating, to know that people know who I am already, when I don't know anyone. This is because my husband came here long before I did, commuting for about eight months before we finally moved here. He has met a lot of people through his work. His practice is well known in town, and word travels fast.

It may prove to be a wonderful thing for my children, to grow up in such a small, close knit community. It also could make me paranoid about things, knowing that not too much is really private in this town. After living in a more densely populated area near a small city for the past five and a half years, I do have an appreciation for being somewhat anonymous in a community. Especially when shopping and running errands.

My husband hasn't helped this issue at all, as he decided to advertise his business on the shopping carts at the local grocery store here. This happened a month before we moved, when he had still been commuting. He thought it would be a good idea to advertise in a place where everyone goes, because we were going to be new in town. He took a picture of the two of us holding baby Nate and put that on the ad.

The first time I went to the grocery store after we moved here, I went to get a cart and I almost fell over. I gasped in shock, and then laughed at the rows and rows of carts lined up, all with my picture on every... single... cart.

Great. So much for anonymous grocery shopping.

I pushed my cart through the dairy section and an older man looked straight at me and smiled.

Well, this is something, I thought. He is either

1. Just a nice friendly, smiling man who is being nice to strangers
2. A creepy guy checking me out
or 
3. He recognizes me  from my picture on every single cart in the store.

I'll never know for sure.

Oh my. Who the heck are those people? I'm covering that up with my purse.

Why is that woman taking a picture of her grocery cart? What a total weirdo.

You might know from reading about my shopping experiences with Lilli that I prefer to keep our shopping trips short and anti-social, because Lilli has a very hard time with going to stores. "Hard time" meaning: loud crying, shrieking, pushing, collapsing on the floor, running away. As if shopping is pure agony. (It is to many people, we just don't all act out our feelings.) We almost always draw a lot of attention to ourselves. I have not attempted to take her to this grocery store with me yet in our first four months of living here.

That day will come eventually. (Maybe.) But for now, I am happy about the fact that the grocery store is two minutes from our new house, and I can leave the kids with my husband and dart out by myself to pick up food.

The ads were only supposed to be on all the carts for one month, but a bunch of them are still hanging around. Maybe the ones that were in the far corners of the parking lot on the day they were supposed to be changed. Last week I had Josh, Chloe and Nate with me at the grocery store while Lilli was at summer tutoring for an hour. As I pulled out my wallet to pay, Chloe said loudly to Josh, "LOOK! Josh! That's mom and dad on the grocery cart!" She pointed to the cart at the end of the register next to us. "SEE? SEE? Look, it's Baby Nate!"

"Yes I SEE!" yelled Josh. Both of them looked at the cart and discussed it loudly for another moment.

I just kept on rummaging through my purse. Crazy kids. I don't know what they're talking about.

I have several posts that I've written since we moved here, that I will be putting up here soon. At first I held back from posting them, because I did not want to be a downer. Things started out pretty tough here for Lilli. I even wrote the gentler version with some of the crazier stuff edited out. I can't put it ALL out there, I never know who is reading this stuff. I knew it was going to be tough, but I didn't know that the beginning would be that challenging.

But as I had hoped and prayed, things did get better. And they are still getting better every week. Just so you know I am being genuine, life always has its ups and downs and when I say it is "better," I don't mean it's all rainbows and fluffy clouds and kittens all the time. It's better because we are through the tough transition period.

Well, sorta. Almost through.

So things are settling down a little. I wanted you to know about how things got better, instead of leaving you all hanging.

It is a new adventure. The story isn't over yet.