Sunday, February 15, 2015

Driving and Moving Towards Our New Life

I am driving on a mountain road, following my husband's car. I have all four of our children, who happen to be sleeping or quiet at the moment. My husband has our dog and a bunch of empty boxes, which we spent all weekend unloading at our new house. We are driving back to our old house. We will fill these boxes back up, to get ready for our last big trip up in two weeks.

I am excited, hopeful, and also concerned at the same time for this big move. Moving means new hope to me. New opportunities for Lilli. New opportunities for all of us. I have decided that instead of being scared of the unknown, that I am going to be hopeful. Hopeful for her new school and new teachers. Hopeful for some real friends for Lilli. More time together as a family. More chances for us to relax and enjoy each other. More rest. These are things we dream about and talk about often.

Most of my dreams are focused on Lilli at the moment. We just had an IEP meeting for her, looking ahead for next year. This has been a very rough school year for her, so I am hoping it will get much better in this new place.

My rear view mirror is tilted just-so, focused on Lilli who is sleeping in her oversized special needs carseat. Every few minutes, my eyes glance over to the Diastat kit (emergency medicine to stop a seizure) which is sitting on the center console next to me. I know that it is there, but I can't help but continue to make sure. It's a nervous habit I've developed over the years. She had a seizure at the new house this weekend, on the air mattress we are using to sleep on the floor. Maybe that is partly why I am so paranoid as I drive. Maybe it's because of all the unpacking, and being off schedule. We never really know for sure.

We are exhausted. But this is currently our "normal." We are used to it.

I know that my husband is watching us carefully in his rear view mirror right now. If I make the slightest move to slow down or move to the side of the road, he will pull over immediately and leap out of his car, running to mine. Seizures in the car have happened so many times before, I have lost count. One of those times, we were moving. He was driving the big Penske truck in front of me. I was driving the mini van with Lilli and Chloe, and Josh was seven months away from being born. We were inching forward in a traffic jam on the interstate.

I saw Lilli start to have a seizure in the rear view mirror, and I swerved to the shoulder. Jasen swerved the truck over too, and ran back to me. I called 911, but I didn't know where we were. Chloe was yanking on her car seat straps, yelling about having to go potty. People drove by slowly in the thick traffic and gawked.

I even remember what I was wearing that day. It was July. I was wearing a blue sundress, and it was hot. Nauseous with morning sickness, I ran down the shoulder of the road in the windy heat to see the number on the next mile marker sign, so I could tell the 911 operator where we were so an ambulance could get to us.

To this day, when Lilli falls asleep in the car, I make a mental note of each exit as I drive on the highway, in case I need to call 911 and tell them exactly where we are.

It's experiences like this that make me high strung and paranoid.

As I drive, I think about the past six months and how much we have experienced. I have been quiet on this blog for a long time now, deeply troubled by a negative reaction to a past post. I haven't stopped writing. Just stopped posting. Tentatively, I will start to open back up a little bit.

I will look back on these past six months and say that it was a season filled with extremes.

Extreme joy. We had our fourth baby in September. He is a beautiful, healthy baby boy who has done nothing but make me smile since he arrived. His name, Nathanael, means "Gift from God," He is laid back, easily soothed, and he fits right into our noisy, busy lives and goes with the flow. Quite a gift.

Extreme exhaustion. We have been packing, moving, painting, and traveling back and forth from the new house (an hour and a half away, with a newborn) since December. Moving OR having a newborn are each a big deal by themselves. Put them both together and you have to hang onto your sanity with a tight grip.

Extreme frustration. Lilli's school year will be difficult to describe. I do not think I can covey the amount of daily meltdowns, screaming, tears, and frustration around here in the past six months with school. It was not like this in the past three years.

I am afraid I started getting used to it.

And it's not supposed to be like this.

In the beginning, I braced myself for it each day because I figured it was a transition. I assumed it would get better. I never saw Lilli act like that for her past teacher, Ms. Leslie. I figured, new teachers, new routine... it will get better eventually. 

It didn't get better.

At the pumpkin farm we go to every fall. Lilli hated it. Even though it's heartbreaking, I chose this picture because it sums up our fall.  Lilli was pretty much extremely unhappy for most of it. Josh and Chloe were happy, and the baby slept for most of it. The entire fall, I'm talking about, not just the pumpkin farm.

Even this week, screaming and crying that hurts my heart and makes me want to cry. It seems so unfair that after all the progress Lilli has made in school, that we would lose it all in just a few months' time. We took huge steps backward. I really struggled to remain positive this past fall. It was hard to remain hopeful about her academic progress, even after everything we have experienced with Lilli. I felt like the gains we had made were all slipping away. One person suggested that Lilli did not "regress" so much as she just stopped progressing. 

I'm not so sure about that.

I believe this school year has been particularly challenging because everything was NEW for Lilli. And new is not necessarily good for a child with autism who likes everything to be the same.

We had been with the same teacher and therapist for three years, and then everything changed. Lilli also no longer had ABA therapy hours. This felt like a huge empty hole in our days. I felt like she was floundering, forgetting many of the skills she had worked so hard to gain. I was overwhelmed to suddenly not have that support in our lives. As a result, I felt like I could not keep up. I had to prioritize.

No, it was more like survival.

All that work to keep her shoes on? Gone. She's barefoot again. The ABA therapist's awesome success with Lilli putting her own earbuds in and listening to music? Not happening. Watching too many movies and not enough books? Yep. Meltdowns, tears and anger are daily now with school. If anyone reading this has the least amount of judgement in their mind, please keep reading my blog. You are the reason I write.

School this year - still homebound services in our home - was a new time of day (afternoon, which totally stunk but that was all that was offered to us). Last year it was 8 am to 11, and it worked perfectly. This year it was 3 pm to 6 pm. All parents of young children who lose their minds just before dinnerime, let that time sink in for a minute.

New teachers - three new homebound teachers. That was honestly the hardest part.

This girl. Oh Chloe, you have no idea what an
amazing sister you are. 
And our schedule was totally new and different. My husband started a new job with a new schedule which required him to commute 3 hours each day. It's a great job. We are so thankful for it. But it was another change. We were used to having him come home on his lunchbreak, and home for dinner. Now, he was gone from 6:30 am until 7:30 or 8 pm, and this brought new stresses into our situation. I know Lilli was affected by it. It was a long day for all of us, with Lilli having school at the end of the day. That is partly why I say it was survival.

Let me tell you what you might miss in this
picture. We are standing in a parking lot
at the local museum.
Chloe is holding onto Lilli with a tight
grip so that Lilli will not run away, into the
parking lot that is busy with cars.
Yes, Chloe is different. She has Lilli for a
big sister. She gets it. 
The biggest change for Lilli was that we were about to have a new baby. Lilli had been through it three times before, but it was a challenge each time for her to have her mom morph into a huge, waddling, moody, tired mama. Lilli requires a lot of physical help with bathing, dressing, toileting, and some lifting. She still wants to be picked up. You can tell her no, but she will literally climb up you like you are a tree. I just couldn't be the same mom for her while I was pregnant.

Right before Nate was born in September.
 I know what you're all thinking. Pop!
Don't ever, ever say the word "pop" to a pregnant woman.
 I'm dead serious.

Changes in routine can be tough for anyone, especially children. But it can completely throw a person with autism off for the entire day.

Or as in our case, the entire season of autumn 2014.

Lilli's new baby brother arrived at the end of September. Lilli absolutely needs consistency and routine, and there was very little of that around here with a newborn.

On top of all the big new stuff, we found out that Lilli had been dealing with new teeth.

In mid-December, I took Lilli to the dentist, who told me that Lilli had lost several molars since her last appointment six months ago. What?! Never saw a molar fall out. Tooth fairy didn't know to come. Holy mackerel, no wonder tooth brushing time was such a challenge. This is the kind of thing that happens with a non verbal child. The dentist estimated that the teeth were lost two to three months ago and the new ones started coming in. (How do you lose molars unnoticed? But it happens. One night Jasen found one of Lilli's molars in his work bag. We don't know how it got there, or when. It was a beautiful, perfect pearly white. We put it under her pillow for her and she got her tooth money.) So Lilli had been suffering with loose molars, lost them, and had tender gums with new teeth coming in around the same exact time that she lost her ABA therapist and got new homebound teachers at a new time of day, and a new baby brother.

No wonder she cried a lot this fall.

We had even taken her to have a doctor check up, but nothing was said about teeth. We thought she didn't like her new teachers. And maybe she didn't. We thought she was having trouble with all the changes. And probably she was.

Even the room in our house where she had school changed because one of the new teachers was male, and I felt uncomfortable with the idea of Lilli being closed back in her bedroom with him at the end of the hall. So we moved school out to the sunroom, with a windowed storm door to keep things feeling separate. This might seem like not a big deal, but when everything else in Lilli's world was changing, this was one more adjustment for her to cope with.

Every day during school, Lilli pressed her face up against the other side of the glass storm door to the sunroom, sobbing, looking into the kitchen with pleading eyes like she was a caged, tortured animal. It would almost have been funny, the way her cheeks and mouth pressed against the glass, except that it was absolutely heartbreaking. I hated that she hated school now. She was not like this at all for the last three years with Leslie.

Behind Lilli, on the other side of the door, the new teachers tried to figure Lilli out.

It takes a very long time to figure Lilli out.

Our only saving grace with school was that Lilli's previous teacher, Leslie, was still connected to her, but in a new way now. Leslie came to briefly visit twice a week to assist the new teachers in the transition. We also arranged for Leslie to be Lilli's assistant for the one hour she went to visit the school each week. When Leslie was here visiting, Lilli was happy. But as soon as Leslie would leave, Lilli would almost always fall apart and sob.

Whenever people asked me how it was going with the new baby, I always said the same thing. "The baby's easy! It's Lilli that's hard." I really meant that. I tried to remain hopeful, but I began to dread Lilli's afternoon school time.

I would be sitting in the rocking chair in the living room with my sweet new baby, completely stressed to the core by listening to Lilli's growly screams and shrieking crying. This happened every day. Sometimes she cried angrily for long periods of time. Sometimes she would bang on the door and sob with sorrow. I cannot describe how stressful, puzzling, heartbreaking, and upsetting those hours have been, for months straight.

Often I went out to the sunroom, carrying the baby,  and tried to see if I could help. Sometimes I thought it might be best to leave them alone and not intervene. Some days I have been teary and discouraged. Some days I have just been mad. I have wondered, why couldn't someone else just figure it out? Some days I have been frustrated with Lilli because of acting this way for the new teachers. Was she manipulating them?  I was sick of trying to figure it out. I was tired of making suggestions, tired of Lilli tantruming and crying every day. I was just... tired in every way possible.

The days were long.  I would think about wives who had husbands that traveled for work or served in the military for months at a time, and tell myself to quit complaining, that I had it good. My mother in law was my lifeline, and came over to help me in many ways. A small church that we do not even go to sent us delicious home-cooked meals for two weeks, and I will never get over their kindness. They had no idea how much they helped us during those chaotic afternoon-dinnertime hours. I am not sure how we would've survived without the help of that church, and my in laws.

At one point in November, I said to my husband after another awful school afternoon, "These teachers are going to quit. I just know it. No one would hang in there after all this time of crying and doing nothing."

And sure enough, one did quit. He said it was because of other reasons but I wouldn't have blamed him for giving up. I overheard him through the storm door one day saying firmly, "Point to the number 6, Lilli. No, the 6. No, that's not the 6. Look. Point to the number 6."

This was crazy to me. Lilli knows numbers. Lilli can do addition and subtraction. He was taking it down to the simplest level of number identification. She would not point to anything he asked. It was obvious that he was frustrated with her. She would not do math for him, or anything else. She would not do any of the things we told him she could do. Did people think I was making it up? Oh yes, she can do math! Sure. For three solid months, every day for three hours a day, he never saw her do anything other than cry, chew on Legos, and play on

In the beginning, I was highly motivated to convince the new teachers of how much Lilli has going on in her mind. I kept saying, "She's smart. She can do math. She has been doing addition, subtraction, multiplcation, and fractions. She is doing 3rd and 4th grade spelling words. She likes to be read to, and Leslie used to read grade level social studies and science books to her." I knew I wasn't crazy. Three professionals had just spent the last three years seeing all of what Lilli could do.

I felt stupid after a few months. She never showed the new teachers that she was capable of any of that. I stopped saying, "She used to..." because it seemed hopeless. I didn't know why Lilli wouldn't show them. Here she was supposed to take a computerized grade level state test in the fall, and she wouldn't even point to the number six.

She had completely shut down.

I continued to tell Lilli that she needed to show other people how smart she is. She needed to prove to others that she could do this schoolwork, so that her teachers would continue to believe in her. Lilli didn't seem to care about that. She was just angry. I didn't know what was going on with her, I only knew that she was incredibly unhappy and frustrated.

The director of special education even came to our house for two days and observed, trying to help. Then we got a new teacher to replace the one who quit. A third new teacher within five months. She started at the beginning of December.

Others asked me why I wouldn't just homeschool Lilli and teach her myself. The long answer would be another post. The short answer is this:

I can't.

I need others to help me with her. We do so much to help Lilli for twenty one hours of the day, it's not too much to expect help for three school hours from an experienced teacher.

Maybe Lilli was not regressing. Maybe she just hit the pause button when everything changed. Everything was so new and different and frustrating for her, to have new people who did not know or understand her. Not only did they not understand her, they were very frustrated with her. It makes sense. Sometimes I would hear one of the teachers saying over Lilli's loud crying, "WHY are you acting like this?! WHAT is wrong?" But the sad fact is, Lilli could not answer the teacher even if she wanted to. This is the point of having the teacher here - to teach her to use her communication device. But Lilli was not able to answer a question like "Why are you acting like this?"

It must be awful to not be able to speak. All Lilli could do was cry.

It was just a very hard season for Lilli. But we have new hope heading into this move.

Soon we will meet with the new school district. Soon we will make new decisions about Lilli's education, and already I see big changes coming. Good changes.

In this year of 2015 we will begin many new things. New home, new schools for three of our children, new community, new church...all with a new baby. I laughed one night and said to my husband, "Well let's see, are we doing this right? In 2013, you graduated from school, got a new job, we bought a new house, we fixed it up, and moved. In 2014, you got a new job, we had a baby, we bought a new house, and we will be fixing that one up and moving again. What will 2015 bring?"

If you were raised in the church, you might be familiar with the passage of Proverbs 31. It is about being a wife and mom. The woman in that passage used to seem to me to be unrealistic and completely, impossibly perfect.  But no one is perfect. Through reading and teaching the Bible to my children, I have only in recent years been able to start really imagining these people in real life situations as I describe them to my kids. It used to feel distant to me, in black and white Sunday school drawings in my mind. But now I can see real people.

[a]A wife of noble character who can find?
    She is worth far more than rubies.
11 Her husband has full confidence in her
    and lacks nothing of value.
12 She brings him good, not harm,
    all the days of her life.

Now I have come to realize that Proverbs 31 is not about being the "perfect" wife and mother. I am certain that woman had her failings and times of discouragement, they just are not pointed out to us. She surely had her moments when she was exhausted and covered with baby spit up, and dinner was burning while she yelled at her children to clean up their messes and help her. That part where is says she gets up while it is still dark? I used to imagine a serene, lovely, perfect woman waking up and gliding out to the kitchen humming like Snow White. But now I really think she woke up exhausted to a crying baby at 5 am and dragged herself out to make coffee like any typical mom, praying for strength for the day and mentally running through her upcoming schedule. She is a woman I aspire to be like, in attitude and skill. She is not perfect. She is just a hard working wife and mom with a good attitude about life.

She considers a field and buys it;
    out of her earnings she plants a vineyard.

This part? I think of it as, "She considers an inexpensive item at the local thrift shop, and buys it. She sells it on ebay and uses the profit to pay for her kid to go to preschool."

When it snows, she has no fear for her household;
    for all of them are clothed in scarlet.

My version is "When it snows, she is not worried, because she bought snow pants on clearance last May."

When you read it, imagine a real live mom. It's not so crazy if you try to put it in a modern day situation. It's simply about a woman taking care of her family. And that's any mom, whether she is working or at home. This woman is both, because she works from home.
I hadn't looked at it in a long time, so opened my Bible up to Proverbs 31 to check it out. I wanted to re-read the one line I really remembered: "she can laugh at the days to come." And I smiled to myself, because when I flipped to that passage, the only line I had underlined on that whole page...was that line.

She is clothed with strength and dignity;
    she can laugh at the days to come.

She can laugh at the days to come.

What does that even mean? I want to laugh at the days to come. Not in a cynical way, but in a hopeful, trusting way. I want to look forward to the future, to be excited about the unknown, to have hopes and dreams. I want to keep on laughing, because I am laughing right now. This is crazy - to be moving again and starting all over. I will have to go through this new-teacher thing with Lilli all over again. But I have learned a lot from 2014. And I am excited about 2015.

There are good things to come. I really believe that.

Though there will be many days, I'm sure, where there will be tears of frustration and exhaustion. I really hope that the laughing outweighs the crying. Or maybe that when there is crying, that we can laugh at the same time.

A happy moment, taken on December 2nd. This was taken in the afternoon, before school at 3:00. 
Selfie with a gingerbread house that Lilli helped decorate. This was pretty much my "look" for the past six months. I post it with no shame. I am a make-up-less, pony-tail wearing, tired mom with a newborn. 

It is easy to have hope and faith during the good times, when things are going well.  It is really tough to have faith and hope when everything is going wrong and you're feeling discouraged. Faith that is not tested is really not worth much. I think that this fall, my hope was tested.

I just read through my previous post about having crazy hope. Sitting here at 5 am in my quiet kitchen, I am teary with a thankful heart that God is good, and He is faithful and gracious. He does not promise that life will be easy. When we face our toughest days and we are at our absolute worst, there has to be something we can grab onto and hang on. I hang on to the knowledge that God is good, no matter what.

I need to remember that He loves Lilli more than anyone does, and He has great plans for her. Many days I have a hard time seeing that. Many days I am filled with discouragement, and I don't know what to expect.

But I can say that God always surprises us. He really does. My husband has a new, amazing job. All fall, we searched for a place to live near his work, and for awhile the circumstances were looking like we were going to have a lot of trouble finding a new home and moving there. Jasen continued to commute, handle everything that comes with a new business, and look for a decent place for us to rent and raise our family.

Remember what I wrote about in my post about hope? About how God gives us immeasureably more than all we can ask for or imagine?

In December, I stood in my new back yard of our newly-purchased home and looked around with tears in my eyes. I looked at my husband and said, "Now this is immeasureably more than all we can ask for or imagine."

It wasn't an amazingly perfect house or yard.

It was the fact that it was perfect for us.

It was so perfect, I'd never even stepped foot in it until after we bought it. When my husband saw it, he just knew. He called me and sent pictures. I said, "I know this might be insane since I've never even seen it, but I think you should make an offer."

He responded: "I already did."

Happy belated New Year to all of my readers. My hope for you is that this year, you can laugh at the days to come, with joy and gratitude for this life we have been given. As always, thank you for caring about our family, our journey, and for reading and commenting on here, or on facebook. Your encouragement is invaluable to me.