Sunday, November 3, 2013


What if James doesn't get better because I’m too afraid? Because I have so much fear of what the future is going to bring that taking that first breath in the morning is something that I have to motivate myself to do? There are so many people out there who know what I’m saying and know how that feels.

But I do get up, I take my shower, get dressed, let the dog out and make Chris lunch. The part of my day that is so simple and normal, so easy, I’m lucky to get to start my days like that.

James swinging in the back yard wearing his particular socks
After that the real day starts and the constant anxiety over what MIGHT happen that day. The worry over the things that could happen. The dread of what will happen. What if today is one of the days that James has a hole in one of his socks (he has a certain kind of socks he likes)? What other socks will I be able to get him wear? How are we going to pay for new socks to replace the ones with holes? What if today is the first Tuesday of the month, when we have to pay preschool tuition? What if today is the day that Chris’ car finally gives up the ghost on his way to work? How are we going to be able to get him a new car? How are we going to pay for all the little extras that comes with life? If I don’t get up and I don’t start the day then I don’t have to face any of that.

Is dreading the status of my son’s socks worth getting him dressed in the morning to go to therapy? The sock thing is a more recent behavior of his, so until this point, on the day that I did find a hole in one of his socks, I didn’t have to worry about where I’m going to get $5 to buy him a new pack of socks. But now I do.

While he was at work we heart attacked daddy's car! (2011)
The day moves forward and after getting the twins dressed Chris leaves for work. Now this one is scary, a frightening kind of fear. Chris’ car is literally falling out from under him. (It was some spring thing by his wheel; Chris said that if you laid down on the ground you could see it.) What am I going to do if something falls off again and Chris or someone else gets hurt? And if everyone is fine what are we going to do about the car? How are we going to be able to fix it? How are we going to be able to afford fixing it? Or worse, what are we going to do if we need to get Chris a new car? I try really hard not to think about this. But we do have Chris’ dad, who has been able to teach Chris a lot of car maintenance so we’ve been able to take care of it the best we can. I just close my eyes and knock on wood that it will make it to the end of therapy, to the end of the day, without totally falling apart.

Off to our first day of preschool we go!
Every Tuesday and Thursday come with more fear. Preschool.

I drop him off and then it's two hours that I pretty much sit staring at my cell phone, usually while sitting in my van, waiting for that call. The call that tells me to come pick him up because they can’t get his behavior under control, that he’s being too “autistic.” Then I would pick him up and we would go under a rock and hide (most likely coming out to grab Lily so she can come under the rock too). Thankfully this hasn't happened. Yet.

Why am I sending him? The rock sounds so much comfier than the outside world. Here he won't disrupt the class or impede the learning of other children. We were able to find a great teacher who was willing to, and wanted to, work with us (she actually taught James' uncle who did ABA when he was James' age). But if those things happen will it ruin it for the next child who needs a place to learn? Why risk it?

James has a therapist that goes with him to school. Having her there costs more than preschool tuition for Lily and James combined (she's worth it though). Sending that check with the twins the first Tuesday of the month makes me want to think that what I’m doing is just pretend. Is preschool going to be worth all of this if his behaviors don’t stop? What if his crying gets worse? What if he refuses to do the things that the rest of the class does? What if they ask him to leave? Should I take Lily too? Do we give up? Do we try again next year? Will my fear of all those things happening be the reason that will cause James to not be a part of society?

James and his shadow, Jenna, doing an art project  at school.
We are more than lucky, we are blessed, to have Jenna in our life, to be with James, to go to preschool with him and be his contact to the outside world. She knows James better than anyone else, she's what makes it possible for me to send him to preschool. She's confident in him and in me. We love her. (Now if only I could give her health insurance...)

But he has to do it. He has to learn how to interact with his peers, and with other adults. He has to learn to follow someone else’s schedule. Learn that there is a world on the outside, and that we’re doing all this because we want him to be with us. We’ve been working so hard, putting all of our time and money, and the time and money of other people, into this. What if I am so afraid of what James MIGHT do that I decide not to send him and I waste all of it?

Left: Gizmo one week after surgery.     Right: Gizmo five months after.       
Can you tell? Cause I can't.
Then we bring in all the extras, things like the dog or getting Lily a new dress for church. When Gizmo hurt his eye a few months ago, he had a “crater-like” laceration that would need a graft to fix, it was going to cost A LOT. Removing his eye would have cost almost as much. Putting him down would cost a tenth. Gizmo was the first thing that James recognized as “alive” other than humans. He’s only five and has a lot of miles left in him, he’s not a disposable dog, but fixing his eye would cost almost as much as a month of therapy. Here is where the fear comes creeping in, does fixing Gizmo's eye mean that I’m choosing my dog over my son? The fear of the situation, of deciding what to do, was one where I couldn't stop the tears. I did consider putting him down, I did. It was so much less money. The loved ones around me made me banish the thought. And we were so lucky. Five months later and his eye looks great, you would never have known, and the vet’s office turned out to have interest-free financing. I am so grateful for those who told me it was ok to fix Gizmo, and that doing it didn't mean Gizmo was more important than James. I am so grateful that I didn't have to give up my puppy.

Lily needed a new dress for church. I couldn’t find one at goodwill and her cousins didn’t have any that fit her. Then Sunday comes and we go to church and during the quiet parts James starts singing the ABC’s. Yes, it’s cute and everybody understands because they know that James has autism but it’s still scary. What if James falls off the wagon and loses it? What then? Stand up and leave? So what does it matter if Lily has a new church dress if we’re just going to end up missing church because those things that might happen are going to be too disruptive? Thankfully we have Costco and a loving auntie.

Lily's new church dress from auntie
James being silly during therapy

Here comes the time to write out the budget. It's not even a budget, it's a list of stuff that we pay to each thing every month, no setting anything aside for fun or the future. Those numbers make me wish that I didn't know how to do math. More fear and more dread. I look at those numbers and think, "If we cut out James' mid shift each day we'll save this much each month..." "And if we do that, we could cut out Friday and Saturday nights because no one wants to work those times anyway.” Right there you have a car payment, the payment for Gizmo's eye, and preschool tuition.

Jenna and James on a preschool field
Thinking about that money makes me think about the week when 3 of our 4 therapists were sick so James ended up missing 6 shifts plus a day of preschool. It's compliance that James loses. He won't do anything we ask him to. Once we do regain his compliance we spend so much time reviewing things he has learned (to jog his memory) that we aren't able to progress in any of his programs.

All the fear keeps coming back, circling the one topic that sometimes seems worse than James’ diagnosis. Money.

I wish my fear came from haunted houses and not paper.

Keeping Gizmo company after his eye surgery
James couldn't say Gizmo’s name this time last year. I remember when we had had days where we hadn't heard James' voice at all. Not even a grunt. The thought of him walking into school and having him say "Hello" to the teacher was one that was completely foreign to us.  We would have never thought that James would be saying "Hi" to his grandpa and uncles while they're singing with the choir at church. He didn't know these people, he didn't know that these people loved him.

Money, no matter how much it scares me, how much fear the math puts in me, the anxiety it brings me, the nauseated feeling I get from dreading the future, and no matter how much it makes me worry, has to be spent. I have to put my fear aside because I know that it's going to be worth it.

At this point, money for therapy is what will make the decisions in our life, but hopefully, HOPEFULLY, happiness is what will someday make the decisions in our life. And James' voice WILL be part of those decisions. His happiness WILL matter and the size of our bank account won't.

They love each other, can't you tell?

There are links on the right side of our blog where donations can be received. Here is our post explaining more about how to donate: (And Chris wrote this post, he's such a good daddy.)

We also have a donation jar at Maui Chill in Lehi, Utah-
Maui Chill has been great. On James' last birthday they let us
come in before the store opened so we could take him there
without having to worry about a public meltdown. We were
able to try to get James to try different flavors of their frozen
yogurt, he wasn't too keen about any of them and we ended
up with a big cup of toppings. They also helped arrange for
James to meet Santa Claus. Santa came to Maui Chill but we
didn't go because I was too scared to take James to a place
where there were going to be a lot of people. So Maui Chill
brought Santa to us (Santa came to our house).

(James at Maui Chill on his 3rd Birthday)

Wednesday, August 7, 2013

I Remember

This picture is from our most recent trip to Texas- These are the shoes he wore on the day he was diagnosed.
(I always get shoes a size too big so they fit for a long time.) This is me and James writing his name
in the sand. He knows how to read it and is almost there on spelling it.

I remember it was a Tuesday. One year ago on August 14, I got in my minivan with my mom, Chris, Lily, and James. My mom was driving and we first took Lily to a family friend's house for the day. I remember her pink and purple backpack, and the little treats and activities I had put in it. Then we drove to Texas Children's Hospital, to the Meyer Center.

This is him wearing the shirt
four months after his diagnosis
I remember that we parked in a corner of the parking garage, one car away from the wall. I remember the little backpack I had packed for James with some treats and his iPod, and that I had a tote bag packed with all of James' past assessments from doctors and our state's early intervention program. Along with some lists our family had made of things that Lily could do that James couldn't. And a list of odd things that James did but Lily didn't. I remember that feeling you get when you know you're late for something, when your chest is tight and you stop noticing the things around you because you're so set on where you're going- but we weren't late at all.

One of the things James did but Lily didn't:
Picking out the Crunch Berries and lining
them up in a row by color.
I remember what he was wearing: a blue, black, and white plaid shirt and jeans from Walmart, and some skater-looking blue, white, and black shoes. White ankle socks. I don't remember what I was wearing but I had on some black with pink DC shoes, Chris had black with green DC's.

I remember James crying when we carried him into the white room to get his height and weight. It was the first room on the left when they took you back. Us telling him that it will be super fast and it won't hurt, wishing he could understand. Hoping that somewhere inside he knew we wanted to help. Then they took us back to the room we would wait in. It was the last room on the left.

When you walked in, to the left was a desk with a computer. Straight ahead there were two chairs under a window. There wasn't really a view, just cement buildings that you knew were other buildings that belonged to the hospital. Off to the right was a short round table with two children's size chairs. And there was a big whiteboard on the wall above the table.

My mom and I sat in the chairs and Chris sat at the table with James in his lap. Chris was trying to entertain James with a toy I had brought so that we didn't have to resort to the iPod. We all knew that if we let James have the iPod we wouldn't get him back and the visit would be for naught because he would no longer respond to us or would go into hysterics if we took it away.

Three months before diagnosis at the luncheon for my brother's
wedding. Out comes the iPod because we needed to keep
James calm during the speeches.
When the doctor came in I was stunned because it was the head honcho of the Meyer Center. He didn't seem very tall, definitely not as tall as Chris. He seemed nice and that he knew a lot but not in a conceited way. I was impressed because when we started to talk I could tell he had actually read all those papers in the tote bag that I brought, which I had previously emailed to his assistant.

We sat and the doctor spoke with us for a long time. He asked me and Chris about our medical history from the time we were babies. He asked tons of details about my pregnancy. Asked about everything that had happened in James' life so far, a lot of things that I hadn't even thought to mention. And he asked us about autism-like symptoms in our families. Chris' younger brother, James' uncle, was diagnosed with autism when he was 23 months old. My grandfather, James' great-grandfather, had Asperger’s.  Before that moment I hadn't realized how much genetics played part when it comes to autism. I remember that he didn't make me feel stupid. And especially he didn't make me feel bad for all of the things that were different about James, that the way I was raising James was the reason he was so hard to take care of.

James and Lily on a website that teaches
kids letters and their sounds
Then the doctor started to "work" with James. I say it in quotes because when the doctor said his name James didn't even move. When he stood behind James and clapped his hands James didn't even flinch. James did interact somewhat, he did a three-piece shape puzzle that the doctor put in front of him. When the doctor wrote letters on the whiteboard James named them. The doctor put a piece of paper in front of James and when the doctor asked, James was able to draw a discernible circle. I remember when the doctor looked at James' circle and looked up at me and my mom saying that he was impressed.

My son trying to balance as he walks in the
sand in front of my mom's barn
Then we moved on to the physical stuff. The doctor asked us to walk down the hallway during which James insisted on holding both me and Chris' hands. I was on the right and Chris was on the left. I remember thinking that James' pants were almost too short and I would have to retire them soon. We came to an alcove that looked like a very elementary obstacle course. The first thing the doctor had James do was walk up a wide and shallow three-step staircase with a wall on one side but no rail on the other. James wouldn't unless Chris was next to him holding his hand. Then there were other activities that James ultimately didn't do or wouldn't do unless Chris was holding his hand. I remember walking back to the room thinking, "That wasn't very long. Is that how it always is?"

Then the doctor said he had to analyze his notes and he would be back. Now that seemed like it took forever. Me, Chris and my mom split the bag of Twizzler bites I had brought for James. We gave James the iPod, we all were too tired, Chris fighting to stay awake, to worry if we were ruining his life by letting him escape into technology.

Then the doctor came back. Me and my mom were still sitting in the chairs, Chris stood up and James stayed sitting on the floor with his legs straight out in front of him not even looking up or noticing that the tone of the room changed. The doctor sat in his chair and did that thing where you lean forward with your elbows on your knees and your fingertips touching each other. The doctor repeated back to us everything we had said to him. Much faster and much simpler, but the same things we said to him. He said, "When we put all of these things together it adds up to something that we call 'autism.'"

Everyone knows this feeling. When everything in the room
just zooms into those words and you can't see anything else.

I remember almost all of the things he said to us but they would take too long to list. But most important he told us that cognitively James was on a kindergarten almost first grade level (James was 2 years, 8 months old). But when it came to almost everything else, interpretive and expressive language, gross motor skills, speech, etc., he was on an 11-12 month level.

James at 11.5 months old. The age that his
 language skills were measured to
be at his time of diagnosis.
The doctor told us about his secondary diagnoses of Cognitive Communication Disorder (we basically sounded like white noise to James) and Lack of Coordination/Dyspraxia (that he's clumsy and can't hold his own weight). And then he told us that the recommended treatment was 35-40 hours of in-home ABA therapy, starting immediately.

I asked if we could wait until next fall after Chris had graduated and we had more time and money. I don't think I finished getting the question out before he said no. That we had to start right now. My ears started to ring.

Then we left. We picked up our one-page diagnosis sheet and lots of packets that the Meyer Center had prepared for us. We left them our address and name of our primary doctor. They told us that we would receive the doctor's full diagnosis in 2-3 weeks (a detailed ten-paged packet).

We four went down to the cafeteria because we hadn't eaten for hours. James was wiggling and bored and wanted to get down and Chris was trying his best to hold him without dropping anything. I remember wondering if the people watching Chris knew about what we were just told if it would be any different. We walked through all of the different choices of the cafeteria, me trying to pick out the things I knew James would eat. I was becoming almost frantic because James was getting more and more impatient. We ended up getting him a cup of watermelon and some chocolate milk. We didn't stay, just went straight to the van and left to go pick up Lily.

Lily passed out on the drive back to my parents', with no
clue that her life changed forever that day.
There are a lot of things I remember about the way home, most specifically googling on my phone how much ABA therapy in Utah cost, my throat getting tight at seeing the numbers. And worrying about how we were going to tell our siblings. And everybody else.

We got back to my parents' house, set the twins up with some snacks and a show and went to my little sister's room. Me and Chris sat on the bottom bunk and called his mom. I was warm and calm, we were finally sitting, not moving with the wind rushing past our ears. We put her on speaker and Chris told her what the doctor said. She said, "Ok, we'll get started, we know what to do." I know her and know that she hung up and went to her room and cried. Somewhere in all that I’m sure she told Chris' dad and he cried too.

Lily towing James around in the gator two days after his diagnosis.
It reminds me that this trip was still a wonderful trip and I'm so glad we got to go.

Really bad cell phone pic but
the only one I have of James
from that day.
Me and Chris followed the rest of our normal routine, feeding the twins dinner and putting them in bed. Then Chris and I took a shower and I cried for the first time, but not over the whole autism thing. I cried over two things, dumb girl things, my wedding ring and my high school reunion. The diamond had fallen out of my ring the month before and Chris and I were putting money aside to get me a new one. And my 10-year high school reunion would be the next summer and I knew I wouldn't be going to that. And Chris cried. I don't know exactly why, probably because I was crying.

And that was it. That was Tuesday, August 14, 2012. The day we found out James has autism.

From a fortune cookie I got four days before. I don't think
what our family is going through is suffering, but it's definitely
helping us grow courage.

Thursday, May 9, 2013

World's Best Grandmas

First, when people tell me that I'm strong and dedicated and a wonderful mom, all I can think is, "Aren't all moms?" (And those who are trying to become moms, and those who, for one reason or another, can't be moms.) When someone tells me about a bad day they're having but then apologize because they have no room to complain because my day was probably worse, I try to tell them that just because my day was bad doesn't mean that theirs wasn't.

Left is my mom, Glenda and right is Chris' mom, Robin

But my twins, they have a couple of the hardest working, and most patient, grandmas in the business. My mom, Glenda, has shown me how to sacrifice all that I can to make sure that my family is safe and taken care of. Chris' mom, Robin, has taught me about the importance of listening and being available at all times. But just because my mom has taught me about sacrifice doesn't mean Robin hasn't taught me about sacrifice, and just because Robin has taught me about being there doesn't mean my mom hasn't.

It's because of these grandmas that James came to be diagnosed. These grandmas, along with Chris, are the reason I haven't crumpled onto the floor bawling my eyes out or run away to live in a cave in the woods.

Grandma Robin

34 days old in the NICU with Grandma Robin

A day when Robin forced me to let James on the
driveway. He did try to climb in the car and go
 joyriding, but there was no running into the street.
We live in my in-laws' basement, which means that Robin sees my twins every day. Robin is able to know what is happening day-to-day with James' therapy. Robin went through the same things that I am going through now with one of her sons (James' uncle). I can't say enough about how lucky I am to have such a direct resource. And she is honest with me. When James is doing badly, she tells me, which makes it so much more meaningful when she tells me about how well he is doing.

Robin also helps me to enforce things when I just can't do it. That means giving James a bear hug while I try to have him eat a bite of food, so that I don't give up. Or making sure that I take James outside even though I'm paranoid he'll run into the street or fall into one of the window wells because James doesn't understand what danger is.

Seriously? Are you guys seriously making us sit here?
Without Robin I don't know if I could be as nice to my kids as I want to be (and try to be). When I call her from the basement frantic for some reason or another she takes the twins--or Lily--so I can zone. And she tells me that it's okay. And that woman listens to me rant about anything and everything and puts up with my sarcasm and cynicism, which makes me downright bitchy and angry sometimes, but she's still there.

Robin has made my husband the man that he is. He is so patient with me, and he doesn't judge me for the feelings that I have, and Robin has taught him to be that way. When he's home, he's there for his kids and for me. Robin has told me that she tries to be there for "the crossroads," those little times in between that mean so much. I am so grateful to have him and to have her—I definitely lucked out on the mother-in-law front.

Aww, Robin loves her baby, aka My Man

Grandma Glenda

New Year's Eve in the NICU with Gramma Glenda

And, oh, my mom. Everyone thinks their mom is the best one, and I think that about mine. You read all those quotes about how you wish you knew when you were younger how stupid you were being because you didn't listen to your mother's advice—nothing could be more true in my case. I was one of those rebellious teenagers who blew my mom off and took her for granted. I could write for hours about the five weeks she spent in the NICU with me every day or telling me that it really is okay to go to the bathroom just to get a minute, or that I'm not a bad mom for giving James his iPod in public to stop his tantrum, but what I really want to talk about are the differences she's made when it comes to James' autism.

James has trouble taking baths anywhere but our tub in UT.
This is the visit when James got diagnosed. My mom literally 
had to hold him down in the tub for us to give him a bath.  
 Before that it was sponge baths & skinny dipping in the pool.
My mom has 7 grandkids now (with a new one coming any day!) and never once have I felt that James was an extra burden. I've said that if I ever need a babysitter I would need two, the regular one to take care of James and Lily and then an extra one to take care of James. That the extra time it takes to give him a bath when we visit isn't a hassle or that taking James to the barn means being there twice as long is a pain. He's just her grandbaby. He's not his autism, he is hers. She's open about who he is and will ask anyone who she thinks can make a difference for their advice.

My favorite story is a time when my mom and dad were coming back from the barn with James and they stopped to feed the goats. James jumped off the buggy and ran straight for the pool. My mom ran after him jumping into the pool fully clothed with her cowboy boots and all. With my mom in the pool in front of him and my dad out of the pool behind him, James was fine. And then my mom went swimming with him (after he got a life jacket on).

James trying to drive the buggy with Gramma and Daddy
My mom is able to notice the big changes in James. When your kids are growing, you see them every day so it doesn't seem like they've changed that much but then you turn around one day, and they aren't babies anymore. The programs in therapy are such small steps, and with tantrums thrown in, it can seem so daunting. But then we see my mom or talk to my mom and she can tell me about this new little person she sees in him. Knowing how worth it it was to wait during four tries to have him say, "Happy Birthday, Grandma" on the phone, knowing that it's just not the words that he was saying but that he was chaining them and by repeating what we ask him to, he's interacting with us.

My sister-in-law titled this photo
"Grandma Heaven"

The Award

Nothing is better than Grandma kisses (except maybe daddy kisses)
The World's Best Grandmas awards go to our moms because of all that they do for Lily. It's easy to forget about her in the car or at the store or during dinner when we're all trying to help James stay calm and get through things. But they always talk to her and make her feel special; make sure that she knows that she's just as important as James. 

It's so easy to get excited over the little things for James, like eating a whole hot dog, and Lily's little achievements aren't always noticed. They let Lily know that her accomplishments are just as important James', even if people don't always say it. She knows that she's our Little Lily, and we love her (even when she's a brat).

When Lily laid her head down on the horse she said, "Home."

I can't say enough about these grandmas except that I hope that every kid is as lucky as mine are. And as oogey-gooey it is to say, I love them and I wouldn't survive without them.


I'm sure I'll write about the grandpas another time but they are also
 wonderful and help so much to keep us from giving up.
(On the left is Chris' dad, Jeff, and on the right is my dad, Win)

A small update: On April 24 Chris graduated from BYU, and we are now facing the giant step of what to do next in life. Thanks to wonderful, wonderful family and friends who have fundraised, donated, fed us, and found ways to get the therapy materials we've needed, we will be able to take a little time for Chris to find the right position, in the right state. We won't have to accept the first thing that comes, unless it's the right fit. It almost feels like Christmas.

We love our therapy program, our therapists, and our therapy program director and would love to find some way to stay in Utah. I am so hesitant to take James away from something that we know is working but then so many other thoughts creep into my mind. If we stayed here, we would have to live in Chris' parents' basement (which I know they don't mind), we would essentially have no assets when James finished. But we would have James. Fingers crossed that Chris could get a job good enough that we wouldn't be living off of our family and friends, but they love us and would love to see Lily play with James and get hit by a snowball from her best friend.

Being a grown-up really stinks sometimes, another one of those times that reminds us that we really had no idea of all the things our parents did for us and gave up for us. Thank you mom and dad (all four of you), we wouldn't be where we are without you.

Monday, April 1, 2013

Did He Miss Me?

You know when you're cleaning your house, and you're sweating, you've filled up a couple garbage bags and done 4 loads of laundry. But then you step back and look around, and you can't even see a difference? Yeah, I think that's what autism is like to us moms and dads. (And teachers, doctors, grandparents, and pretty much everyone who is emotionally invested in the child.) You work so hard every day, with no breaks. You feel so accomplished when you put your child to bed, and then you wake up the next morning, and he looks at you but he's not really looking at you – he's looking through you.

The five minute mess. A task achievable by any toddler

James and his animals and books
Why does any of that matter when it comes to James missing me? At the end of February I went to visit my parents in Texas for 10 days, when I came back and James saw me there was... nothing. He didn't smile, say my name, hug me, or even reach for me. It was in the morning, and I was getting him out of bed. He's a pretty happy kid in the morning. He sits in his bed reading his books or talking to himself or his toys. Usually when I go in there to get him, he stands up and says, "Hi". Nope. Nothing. We walked out into our big room, and he went right for Chris, the lovesac, and the blanket. So much for missing me.

The more I think about it the harder it is. If he doesn't care that I'm back does that mean that he didn't care that I was gone? I was so worried because 10 days is a really long time. I joked that I was more worried about Chris missing me than James. I wish I had been wrong. (I am, however, very lucky to have a husband who loves me so much.)

When I give James big hugs and whisper in his ear how much I love him, I can't help but wonder if he even knows what "I love you" means. Yes, he will choose me over someone he doesn't know and pick my arms to comfort him, but how much of that is because I am what he knows, and how much of that is joy and warmth created inside him because he knows he's mine?

I love you buddy, I promise the Zoo and the Carousel aren't scary

Here's the part where everyone assures me that he loves me and knows that I'm his momma. Yes, I know that. I'm sure if something happens to me he'll always know, but right now, he won't miss me. He has that special connection with Lily but no one else (there was an instance when Chris, Lily and me went to Idaho for a night and he wandered around calling her name and looking for her). Once something is gone, he'll notice that it is absent, he'll ask about it, but the feeling of missing something is something that he's missing.

Ahhh! Mommy put us in matching shirts!

Lily is making sure that Daddy's hair is perfect
The day before we left Texas to come back to Utah, Lily was in the car with my mom and two of my sisters, and she told them that she misses her family – her daddy and her brother. When we finally got off the plane in Utah and walked out to baggage claim, she did what every little girl who adores her daddy would do, she ran across the room with her arms out and her little backpack bouncing from side to side screaming "Daddy!" and jumped into his arms (one of those things where the people who saw what happened choked up and wanted to hug their daddy).

How I so, so wish that James would do that for Chris, instead of someone carrying James up to Chris, pointing to Chris, and saying, "James, who's that? James, that's Daddy. Did you miss Daddy? Daddy missed you!" James would lean into Chris' arms, and once his memory was jogged, he'd probably give him a hug, but definitely not the "Ohmigosh it's Santa Claus!!!" type reaction that makes the whole room smile.

Playing on tablets

My in-laws told me he was punishing me because I left him for 10 days. I said it was an autism thing. I asked our ABA program director, and he said it's an autism thing.

There is a part of me that didn't mind that he didn't miss me. If my mom died all my siblings, me, my dad, her grandbabies, and her animals would all be devastated. I would go so far as to say that some of them would take years to recover, if they recovered at all. It's the same with Chris' mom. Everyone in her life is so in love with her that the thought of losing her is something that no one around her wants to talk, or even think, about. I don't know what it's like for a 3-year-old to lose a mom, but I do know that Lily would remember me and miss me and have those hard moments in her life, and James wouldn't.

Grandma Grawe (my mom) reading to
Grandma Robin and Lily
(this is Chris' mom)

James not missing me made me feeling less guilty for feeling like those 10 days were some of the best 10 days of my life. I scooped horse, cow, and goat poop, got kicked by a cow, built a goat birthing pen, vacuumed the lawn, helped move heavy bags of animal feed, milked a cow and some goats, helped de-horn a goat, almost got eaten by a horse, held a watermelon piglet (half pig-half wild hog), helped treat bloat in a cow (twice), and so many other things that let me get dirty and forget it all (except for the texts, phone calls, and e-mails about therapy stuff). It was wonderful, and I can't wait to go back. I'd go today if I could (and I'm pretty sure Lily feels the same way).

What I hate the most is the angry/sad part of me that was thinking (and I was excited), "I wonder if he's going to cry and hug me so tight it hurts and smile and laugh and jump up and down when he sees me." I was wrong. I should have known better. I think I was thinking those things because I was hoping for some sort of validation, some sort of reward, for all the hard work we've been putting in and have put in so far. I was wrong, but now I know how high to make my expectations. And someday, when he sees me and screams in delight, it'll be that much better.

My favorite picture from Texas-
Lily protecting her potty seat from Bud and Eli

Tuesday, February 12, 2013

How To Learn "What's In A Name" in 6 Months

February 14, 2013 is the 6 month anniversary of James' diagnosis. I've been debating what to write about: How 6 months of therapy has effected James, how our lives have changed in these 6 months and what it was like before then, what pushed me over the edge to 'run away' to my mom's house in Texas, and other things that are too long to list. I decided that of all those topics I'd share some of the things that stood out to me the most.

Jan 12, 2013- 5 months in,
and the same day he said "ouch" for the first time.
Aug 11, 2012- 3 days before
our journey began

What started us down the autism road was an article on in July 2012 about a husband that no longer enjoys parenting. Somewhere in the comments there was a mom who admitted to feeling that way. I didn't enjoy parenting and hadn't for a while. Chris was working full-time and going to school full-time. He was doing that for us and he loves his babies and loves being a dad, but I would wake up and count the minutes until nap time, and then the minutes until Chris got home, and then the minutes until bedtime.

The biggest supports that I had around me were Robin, my mother-in-law, and Tami, my sister-in-law. Robin's boys (17, 16, and 12) were about to start marching band and had Boy Scout activities and she needed to be a mom to them (which she is very good at). Tami got a full-time job, which I totally understand but that left me alone during the day. And in a month when the new school year started it was going to get worse. Chris would be in his second to last semester and was taking three 400-level classes so we would see him even less than we already did. Some days he wouldn't even get to see the twins at all. So I was going to be alone, all day, almost everyday.

Robin and Tami giving James some of his favorite type of kisses

Around that time we had been planning a trip in August to go Texas to visit my parents. I told Chris about the article. I told him about how I couldn't handle being alone all the time and that when we went I wanted to stay there and not come back to Utah until around Thanksgiving. I think I broke his heart.

This was a shopping trip where James was acting so out of control
that Chris took him to wait in the car until me and Lily were done shopping
(James is watching Barney)
There were a lot of days and incidents that made me feel that way. We had a nice little trip to Costco once. James was screaming and freaking out from the second he saw the cart. We had to move Lily to her own cart because he kept hurting her (not on purpose). I ran away with Lily in her cart to get all the items we needed. Chris stayed with James trying to entertain him, you could hear James across the store. We caved and gave him the iPod, but  James still didn't stop screaming so Chris tethered his phone to the iPod and bought James an app from Baby First TV.

James was so stuck in his daily routine even the smallest thing would throw the rest of the day off, and sometimes into the next day. In the morning we would wake up and snuggle on the couch and watch Curious George 2 and then went onto the next part of our routine. One day an occupational therapist from our state's early intervention program showed up before Curious George was over and I had to turn it off. It was a knock down, drag out tantrum. The OT ended up leaving after about 15 minutes when it was obvious that nothing was going to get done.

Watching George one weekend morning with daddy

And the morning after we had rearranged the furniture? Forget about it.

I do have friends and they invited me out but you can't take a kid like James into public, I couldn't even take James to a park because he has no sense of danger, like run into the middle of the street or touch a hot stove or decide that rolling down the stairs would be fun things to do. It was to the point where Lily was missing out on life because I was too afraid of what would happen, especially since he didn't even answer to his own name.

I don't know if he even realized he was on a horse
Then about two months into therapy something happened that truly rocked me. Our therapist brought her new puppy over to meet us and James didn't even react. A cute Weimaranerer/Chocolate Lab mix, a sweet puppy who didn't jump all over him or overwhelm him. Nothing. We are big animal people in my family. I can't ever remember a time when we didn't have a dog. After that day I got to thinking about the time that we had met my mom's new goats and we had to force James to sit in my mom's lap and hold some celery, and how I had to bribe him with Diet Coke to ride one of her horses. I just chalked it up to sensory stuff.

When I asked our ABA program director about it he said that at that point James might not view animals as living things. To think that James could get an autism dog one day and he would not know that it was there to be his companion, helper, and friend was almost more than I could handle. I'm happy to say that now when Sadie, the puppy he met, comes to therapy sessions with her mommy James says her name and will go lay his head on her side when he is having a tantrum to regain his emotions, or give her high-fives on her paws!

Gizmo, our Pugshire, half pug half yorkie. He's been here since
James was born but James didn't know who or what he was.

Here are a few Facebook statuses that I have posted over the past six months:
  • September 17, 2012- First day of ABA Therapy. James' therapist brings James out of the room all excited. "He said 'mom' ". Then we asked James who I was and he said "Mom-mee". First time ever. So worth $100,000 therapy. 
  • September 24, 2012- Today James called me 'mommy' for the fourth time, my mom was on the phone too, it was awesome. Still waiting for 'daddy' though
  • October 1, 2012- He did it! He just called Christopher Heuer daddy! Yay for James! Holy choked up. So wonderful. Talk about making the rest of my week!
  • October 24, 2012- JAMES JUST SAID LILY!!!!!!! Oh, man, gotta catch my breath. Pretty friggin' cool!!
Dude, mommy, she's totally drinking my soda

  • November 4, 2012- Get ready to cry: They're playing WITH each other. Not Lily trying to get him to respond to her or pulling on him. Not both of them playing with the same toy at the same time. Not both of them playing with the same grown-up at the same time, but WITH each other. She put his sandals on him and they're running around the basement. He's chasing HER (not her chasing him), and they're both doing the patented shriek/laugh thing that they do. They've been going at it for about ten minutes and he hasn't gotten distracted by any of his other toys, even walking on top of them to get to her. And at some point as he was running by he said something that sounded like 'fun'. That is ABA and thousands of dollars at work. SO, SO worth it.
    -They will be 3 in six weeks. It's taken poor Lily three years to have her best friend play WITH her. She won't remember it but me and her daddy (Christopher Heuer) will.
  • December 11, 2012- That moment when someone says "I admire you for the way you handle all of your problems and take care of your family at the same time" and you ALMOST say back "No you don't, you're just glad it's me and not you".
  • December 17, 2012- $30 short in James' therapy account for payroll this week. Makes me sick to my stomach. But he did say 'I love you' to our head therapist last week, so it kinda reminds you what you're doing this for... right?
And the most recent Facebook status that is one of the most important to me:
  • January 12, 2013- So today James said "Ouch." Why is this a big deal? Before today James has only said "Ow" and only during play- this means if anything has ever hurt him he hasn't been able to tell us.
    Last year we were in Disneyland and James started to cry. We had no idea why. We left the park and carried him for almost a mile back to our hotel room with him screaming bloody murder. When we got to the hotel room we stripped off all of his clothes and he was fine. This makes me assume that he was too hot (he had a lot of layers). Not the same as saying "ow" or "ouch" but he couldn't tell us what was wrong.
    Today I was putting his shoes on and someone had tightened them and they didn't just slip on like normal. We were just going in the car to go through the drive-thru pharmacy so I didn't want to take the time to undo the laces so I was just kind of wedging it onto his foot (don't judge, you know you've done it). After a few moments he said "Ouch". He told me that I was hurting his foot, Robin heard it. I loosened his shoe which he then promptly took off and laughed at me. And we praised him so much for saying it he just kept repeating it. But here is one time in his life that he didn't have to hurt because he was able to tell us.
Lily and James in their layers at Disneyland 
(notice the cute gloves)

And our newest "big deal" status:
  • January 23, 2013- James called Robin "grandma" for the first time over the weekend. Whoever knew that two syllables could cause so many happy tears. 
I think the thing that has happened over the past six months that brought so many happy tears are names. James has learned how to say the names of our family members AND he will say their name when he sees them (if he feels so inclined). In November James heard my dad talk, not even in his line of view, and he said, "Papa". I remember all of the times he said each of his therapists' names for the first time. The first time he said "Gizzy" (our dog). I wish I could put into words how much hearing these names has meant to the people around him, I wish I could let other people experience it, it reminds me how hard this little man is working everyday.

I turned 28 on Feb 4, Chris and I are 6 months in, I can't really see the light at
the end of the tunnel. Ask me again in another 6 months and maybe I will.

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