Lilli

Lilli

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 Starfall.com.

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.
20
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.

Monday, February 9, 2015

Road Rage Cure

Road Rage.

Do you have this problem? Come one, almost everyone does to some degree.

I have the cure for road rage. Do you want it?

I'll admit, I used to have a little road rage, back in the day. I've had my fair share of anger at other drivers. But now I don't really have that problem anymore. I have discovered the cure for those pesky bouts of rage and desire for instant revenge.

It is simply this: give the stranger the benefit of the doubt.

Sometimes it is a stretch. But it can be done in almost all situations. We will get to the tough ones in a moment.

I have learned the "benefit of the doubt method" because of all of my own many instances where I wished the person behind me knew my situation. Once you experience something, hopefully you realize that others might have this problem too. It gives you empathy. I think that parenting in general has helped me immensely with overcoming road rage.

Let's face it, simply being a parent can make you a bad driver. It's true! If you are a parent, I'll bet you have done one these things at least one time:

The "Reach-Around Reach." Any parent driver can relate to the "reach-around." This is contorting your right arm back behind you while you keep the rest of your body facing front, your left hand on the steering wheel, and your eyes on the road. The reach-around is to hand the screaming baby a bottle, a binky that fell down the crack of the carseat, a toy they dropped on the floor. The reach around flows into toddlerhood to hand your toddler a sippycup, a book, or one...french fry...at...a...time...just...to...get...through...the...ride.

Many parents can actually do the reach around and not swerve all over the road. But I do know one parent who does swerve a little each time, even if he doesn't think he does. (And it's not me). I now know that this is probably the reason why those dumb "Baby On Board!" suction cup signs were invented. I used to think it was to brag to other drivers, "Hey! I have a baby! Aren't you jealous?!" But no, these signs tell me now that there is a dangerous binky-handing driver on the road, so I should change lanes and get far away from that driver.

The Reach Around Swat/Grab. This is for parents of older children, particularly siblings close in age that are fighting in the back seat. I do not remember getting the reach around swat when I was growing up, and I will not publicly confess to ever attempting to do the reach around swat, but this is what happens when a parent is driving and the fighting has escalated to the point of no return and the parent has reached the mental limit of physical self control.

I will confess to doing the reach around grab to get a toy that is causing a major meltdown between siblings. Just give it to me already. I have done the reach around grab to get shoes that are being sucked on, a toy that is being used to hit a sibling, or a sippy cup that is being held upside down while the child entertains himself watching the drip-drip-drip onto the mini van carpet. I have done the reach around grab so many times that I can now do the reach around without looking grab and usually grab the target on the first try. (You have to be sneaky though because if the child expects the grab, he will wave the toy/book/sippy cup up in the air out of your reach and then it becomes an infuriating game of "keep away.")

The Rear View Mirror on the Child Instead of the Road This one happens on the way home from the hospital with your first newborn. Usually by the second child, you do not do this anymore. You still have your mirror on your first child by then, to make sure the toddler does not do anything to the newborn. ("Look! Eyes!" Yes, the baby has eyes, now quit touching them and leave the baby alone!) This one I confess to doing on a regular basis even now, just because of having to watch Lilli for many reasons. You can count on parents of children with special needs to do this. For us, it is to watch Lilli and make sure she is not having a seizure (which has happened many times in her carseat.)

The No Turn Signal, Whip into a Parking Lot  This I will also confess to doing. Sorry. Sometimes it has been because a hungry newborn has just been wailing so long that I became a little unglued and frantic, looking for the first place to turn into so I can get the baby and feed/change/burp/get the binky that I can't do the "Reach Around" for because it fell way down on the floor out of my reach. Sometimes I just can't push through the sound of sobbing and drive home, I have to stop. Also there are certain instances and sounds that require the No Turn Signal Whip into a Parking Lot.  I am willing to bet every parent has done this. If you hear that gurgle, throwing up sound in the back seat from any child at any age, you don't just keep on driving. We have had many scary moments where I've had to whip over to the shoulder or violently turn into a random driveway or parking lot - without using my turn signal - so I can get to our daughter and help her.

Sleep Driving  This happens to parents of children of any age. Sleep deprivation and parenting go hand in hand. Driving and sleep deprivation do not, although we try to ignore that fact. Missed a turn and slowed down in confusion? Forgot a turn signal? Did a crazy u-turn because you forgot the diaper bag at home on the coffee table and stopped traffic while doing so? Drove slowly in the left lane because you were so tired you forgot you were in the left lane? This is sleep driving. The cure is to stop and get a huge cup of coffee, crank up the music and make yourself belt out the words loudly to every song, and shake your head repeatedly like a dog trying to get its collar off. Then people will not be annoyed by your driving, and they will just look at you funny and stay away from you.

Now, what does all of this have to do with road rage? Road rage occurs when other people are bad drivers. Bad driving happens when people are either inconsiderate on purpose, or inconsiderate by accident. Parent drivers are typically inconsiderate by accident. Even if they are not driving with kids actually with them, they might be the parent that was sent driving to the store to get diapers because the child is at home with the other parent, wearing the last diaper found in the whole house/diaper bag/glove box and *someone* forgot to get them even though they were ON THE LIST. Or maybe that bad driver is the parent who is driving to work in the morning after a long night of being up for hours with a sick/I can't sleep/I just want you child.

When drivers are inconsiderate on purpose, I just look at them and think that they must be having a seriously bad day. Or bad life. They must need a hug. Maybe they just got dumped. Maybe they are having a low blood sugar attack and need to get to Sonic for a milkshake NOW. (Can we all agree that low blood sugar attacks can make us extremely inconsiderate?)

I don't have any bragging-about-my-kid-stickers on my mini van. I have never had a corny "Baby On Board!" sign suctioned to the window. We do not have a family sticker version of us lining the back window. So I have no warning to others about the potential bad driver that I could be.

But I do drive a mini van. So that's probably enough of a clue right there.

The next time someone cuts you off, or forgets to use their turn signal, just imagine that person is experiencing one of these situations.

And then give them the benefit of the doubt, and smile.

Road rage...cured.




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.