I think this is supposed to be the worst

But it doesn’t really feel like it.

I’m going to tell you a story. It’s kind of long, but I feel unapologetic about that. It starts almost exactly a year ago.

In the beginning of 2016 we decided to try for one more baby. We’d [eventually] come to the agreement that four babes would complete our family. I’d like to think we’d prayed a lot about it and sought wisdom and insight, but it was more of just a feeling. So when we received a positive pregnancy test just after celebrating our 10th anniversary we were elated! I’d never told my mom I was pregnant in person. The first time I’d told her had been more of a shocked, “what have we done!?”, kind of blurting. So, as terrible as I am at keeping secrets, we decided not to tell anyone until after I saw my parents at the end of July.

Everything was pretty normal. At 7 weeks we got a dating ultrasound and saw the baby and its sweet little heartbeat. At 10 weeks my clothes were getting a little snug so I went on a little maternity shopping spree. Everything. Was. Perfect. We celebrated a beautiful 4th of July with our families and basked in that summer glow that’s so easy to find. The next day we walked around Ikea and talked about where we would put a boy or a girl. That night I went to bed early. I wasn’t feeling great but I had an ultrasound scheduled for the next day so I was glad not to worry.

And then I woke up. I was having terrible stomach pains. I thought maybe my appendix had burst! I took a handful of tums hoping it would help but it still hurt. I woke Chuck up and told him I was going to drive myself to the hospital; something was wrong.

I got to the hospital and parked the van. I got out and started walking to the ER entrance; thinking of how quiet it looked in the pre-dawn light. And then something happened. Pain started shooting from my stomach down my legs and blood poured out of me and down my jeans. I walked into the ER covered in blood, losing my resolve.

As I checked myself in, my lower half hidden from the nurse admitting me. I told her I needed help. I needed faster help. Something was wrong. She looked at me with the sweetest eyes and said, “Oh honey, don’t you worry. I bled once when I was pregnant and I had twins!” I dared a glance towards my feet and the blood was creeping down towards my knees.

And that’s when someone finally saw me. They rushed behind me with a wheelchair and wheeled me towards a room. It was too late. Everybody knew that but nobody would say it. They got me into a room and I asked for something to change into. I couldn’t find the strength not to cry anymore; what was the point? She gave me a gown and left so I could change. As I undressed another gush of blood came. It splattered everywhere. It was so messy. I didn’t know it would be so messy. I chided myself for the thought that an ER co-pay was worth not having to clean up this mess. I wondered what I was looking at. Some fluid that could have been clear if it wasn’t tinged with little bits of blood and tissue. Some larger clots of blood. Clots too big. I must have made a noise when everything came out because the nurse came back in.

Her face was worried. And then she told me she had to keep samples of everything. And she scooped all my bits off the floor and lined them up along the counter in little jars. I hated that she did that.

By now it was 6 a.m. and I knew I needed to call Chuck. His mom came over and stayed with the kids so he could come to me. He held my hand while I had contractions that got closer and closer. And then it was done. At least some of it was. My body knew what it needed to do. Something had gone wrong. It was all wrong.

The doctor came in a little later and said, “So I guess you know you lost the pregnancy.”

But here lies the craziest part of the miscarriage experience to me. You have to tell people that you were pregnant and that you lost the baby. Or you just don’t tell people. It’s not even that you’re necessarily ashamed, you just don’t want to open it back up. It hurts.

It hurts all different kinds of hurt. Emotional, obviously. But I didn’t know about the physical hurt.

And people might say that you only think it  hurts so much because you’ve only had c-sections. So you don’t know what “it’s” really like. And that will hurt too. And then your doctor will call you in some serious pain relievers and you’ll think she’s overreacting. But she’s not. Your body is on a mission to get everything out quickly. Violently. And, unfortunately for me, after a week of labor pains I still had to have a d&c to finish the process.

The literal worst thing. The worst thing I’d faced. But God was there. I looked back and saw so many ways he’d quietly been preparing me for that week. Like a huge grocery sale at the Target by our house where we completely stocked our deep freeze. Or the fact that Chuck had only just finished summer school the week before, giving me the whole summer to heal. He knew. He cared. He cares for us.

That baby was 11 weeks when we lost it. It would have been born on January 17th. We mourned it. But we trusted God. We weren’t sure if we would try again. Maybe our family was complete with three babies entrusted to us on Earth and one in Heaven above. I felt a renewed stirring in my heart for this mission of motherhood. Feeling so incredibly thankful for the three amazing kids I get to spend my days with. To see a pregnancy go so wrong made me so thankful for the miracle of the three I’d had.

So summer turned to fall and we wondered still if we should try again. We prayed and prayed. And there was no answer. In the past I would have pressed Him for an answer. I would have wondered why He was forsaking me when I called out to Him. But I couldn’t ignore the peace I had. And then one day, I felt like my answer came. I realized that I had to give it up. All of me wanted an assurance from Him. For Him to tell me that wasn’t going to happen again! That He wanted me to have what I wanted! But we can’t pray that way. We can’t put conditions on God. We can’t ask for His will our way. So I humbly prayed for forgiveness. That I still have so much to learn about grieving well. So much to learn about trusting and following. About not interjecting myself in what He has for me. I stepped back, held up my hands, and said, “I don’t care! I don’t care what happens to me, I only want  what you have for me. Good or bad. Easy or hard. Just You and Yours.” And I felt the stirring that said it was okay to try again.

And we did. And we got to experience the same elation and joy to think we would add another member to our family. I looked at the dates and realized I would be exactly 11 weeks to the day on the date that our first baby would have been born. There are no coincidences with God, I thought. This is a sign that everything would be okay.

But it wasn’t okay. This time we only made it as far as the dating ultrasound. There wasn’t a heartbeat where there should have been. I decided to wait and let things happen naturally. It took a long time. A long time of still feeling pregnant. Blood work numbers still rising, knowing that the chances of a viable pregnancy were slim. And, eventually, my body was ready. On January 17th, the day our first miscarriage would have been born, we lost for a second time.

I knew what to expect this time. And had less of everything to pass. But it still hurt. And it was still hard. And my heart still ached in the confusion of it all. Why did it have to be that day, I wondered.

But I felt fresh hope through this loss, too. I looked back to the previous summer and saw how many other ways we’d been protected. We went eight months without a single illness in our family. Not so much as a cold while it seemed like our friends were fighting off plagues. There are no coincidences with God. He’s faithful. He’s just. He gives. He takes away. There’s beauty in all of that. There’s peace and comfort in his protecting hand. There’s hope that He knows all, knows what’s best, knew that would happen and knew what you would need.

I told you this was a long story. I’m really not even sure why I decided it was time to tell it. I’m just letting my heart speak.

And that brings us to this week. It should be the worst week. We met with the doctor after the second loss and she said there was no reason or explanation. That it was unusual to have three “normal” pregnancies and then experience this. So we tried again.

And we lost again.

This week seemed to be the culmination of our hopes, dashed. I know that sounds dramatic. We put our house on the market two weeks ago and the realtor said to expect multiple offers the first weekend. And they didn’t come. If you look at the stats on our listing, they look great! There are realtors sharing it with their clients on the MLS. There are three times as many people looking at our listing over any listing within a mile of our house. But no one’s biting. And that should worry me. But it’s not a coincidence.

My doctor said she’s never had someone like me. Someone with three healthy pregnancies to go on to have three different types of miscarriages in a row. That’s right, they’ve all been different. There can’t be one reason because they’ve all had different causes. But it’s not a coincidence.

And then we came to today. Sorry, my youngest love, but what made you so angry today was the easiest disappointment I faced all week. A failed food challenge for the one that was supposed to be a sure bet. His little heart crushed, his hopes deflated. But it’s not a coincidence.

Instead, it feels like opportunity. Opportunity for God to show all that He is. He is so good. He cares about everything that happened to me this week. This year! He knows it all. He knew it all when the world began. How else can we survive living in this world without the faith that He has plans. That he’s in control. How else could we face weeks where it feels like everything is lining up to try to get me to throw my hands up and scream at the Heavens. To give up and break down.

But instead I opened my Bible. Not seeking out a specific verse, but to make sure I get the reading in for the day. One of those read the Bible in a year plans. And Ecclesiastes 8 came up.

Who is like the wise?
    Who knows the explanation of things?
A person’s wisdom brightens their face
    and changes its hard appearance.

—

Whoever obeys his command will come to no harm,
    and the wise heart will know the proper time and procedure.
⁶ For there is a proper time and procedure for every matter,
    though a person may be weighed down by misery.

⁷ Since no one knows the future,
    who can tell someone else what is to come?
⁸ As no one has power over the wind to contain it,
    so^[a] no one has power over the time of their death.
As no one is discharged in time of war,
    so wickedness will not release those who practice it.

So what are we left with? The hope that there’s a season for everything. That He is working and I can grow through this season. If I let it wash over me, He will be there to make sure I don’t go under. I’m sad. And my heart hurts. But I can invite him into those places. New places. More space for Him. More letting go of everything I thought I needed and trusting in what He has for me. That’s hard. But it’s a good kind of hard.

The Hilarious Joke Food Allergies Are

I quit Facebook a couple months ago. Shut down the account, the whole thing. I didn’t announce it; I just sort of backed out- exhausted by the veil it provided for people to say offensive things they’d never dream of saying in real life. It was glorious. I couldn’t believe how much time I recouped. My house was so clean!

But I ran into a couple of hitches. One being that most of the people within my immediate social circle use it to share exciting life events and I was missing “stuff” I didn’t want to. Another issue came when I went to log into things I’d previously signed up for using that super handy ‘Sign In With Facebook’ button and I couldn’t log in. [That Mark Z is a real trickster…] So I put my page back up. I told myself I’d check it once a day. It was fine.

And then today I see this little gem run across my feed:

I ate peanuts on a plane today and nobody died.

Hilarious. Right? It’s not the first thing I’ve come across to joke at an allergy-sufferers expense. It wasn’t really surprising and only a little upsetting. Mostly it’s just insensitive, I think. There have been memes suggesting food allergies are merely a form of natural selection. Hilarious. There have been giggles about really obvious food allergy labeling [like peanut butter saying in bold it contains peanuts]. Hilar. Waitstaff rants about catering to allergy divas. Hardy har. Everyone probably has some thing they’re sensitive to that others are more flippant about. At first I spoke up. I wanted to educate them. “Some people have airborne food allergies. That really could have killed them.” “Do you know how helpful detailed food labels are when you have to read the food label on every item you buy, every time you buy it (even if you’ve bought it thousands of times before!) to make sure it’s free from six different allergens.” “Sorry? We don’t eat out much because it’s really not convenient for us, either.”

I guess that’s why I quit Facebook. Why get mad or upset about something said by someone you really aren’t even friends with? I don’t feel like there are people in my everyday life who are flippant about my kids’ food allergies. In fact, it’s quite the opposite. It’s friends keeping sunbutter on hand in case we come over. Changing their lunch menu to look like ours so my kids aren’t left out. My mom stocking her pantry full of my kids’ favorite [and expensive] allergen-free food before we visit. My sister-in-law having an allergen-free brownie sundae bar just for my kids at her son’s birthday! We are wrapped in love by friends who are willing to be educated and inclusive about food allergies.

So that’s what I remind myself of when someone wants to make a hilarious joke about food allergies. Maybe they’ll have someone in their lives they deeply care about one day who can show them what food allergies really look like. Maybe they’ll read this and decide 12 likes on their status isn’t really worth a joke about something so serious.

For now I’ll leave them with this:

I have a daughter. She’ll tell you she’s five. That she’ll be six in five months. And that she’s our “#1 kid” [our firstborn. hehe.]. In that order. Immediately upon making your acquaintance. We found out when she was very young that she had food allergies. We found out because she had weeping sores all over her legs that no amount of steroids would heal. She’s allergic to eggs, peanuts, milk, and wheat. And not just a little allergic. Eggs and peanuts can send her into anaphylactic shock. Yes, that’s something you learn the hard way. She need only eat trace amounts of eggs to begin vomiting with facial swelling and compromised breathing. Her body will cover itself in hives that arc all the way to the lymph nodes under her arms. It’s scary.

She has a brother. He’s only 19 months old. He’s a baby. He also has food allergies. And we keep finding more. At first it was the same issue. Eczema that we couldn’t heal. We had him tested and found out he was allergic to peanuts. Six months later, he ate some adorable cheddar bunnies and his face began to swell and raised hives spread all over his body. We had him tested again and found he’d developed an allergy to milk. No, I don’t know how food allergies develop either. No, neither my husband nor myself have food allergies. Six months later we were enjoying a dinner with our family on vacation when he had a tiny bit of hummus and his face began to swell. He started swaying when he tried to walk. It took Benedryl, two Epi-pens, a trip to the emergency room, and an adult-sized dose of oral steroids to stop the allergic reaction. A third round of allergy testing revealed he’s now allergic to eggs, peanuts, sesame seeds, almonds, and milk. At least that we know of. He’s just a baby.

So maybe I am a little angry tonight. Mostly I’m just sad for my kids. But to all those jokesters who think it’s hilarious to make light of food allergies, here’s my baby:

So hilarious.

Entryway Key Storage

My New Year’s Resolution this year was to stop being bugged by stuff. I never make resolutions but I felt pretty strongly about this. As a stay-at-home mom, you spend so.many.hours staring at the same set of walls. Especially in the winter. Especially when you have babies that have to be home to nap. And [I think] like most everyone, there are tons of little things around the house that annoy me. So 2015 is the year I’m going to try to either stop obsessing over things I can’t change and deal with them. Like laundry. JK. Sort of JK. Or I’m going to try to come up with ways to fix the things that do bug me. I feel like this is doable. This is achievable. I can wear work out clothes while doing this without actually having to work out. This is good.

I mentioned a few weeks ago that I spruced up the playroom we have.

It has been gleefully de-bugged.

This week I set my sights on the key hooks that hang just next to our door.

This was actually one of the first things we bought for our house. It seemed a necessity. But there were a couple things that made my eye twitch. It just looked messy all the time. And it was a shelf right next to the door. So when my sweet children accidentally shut the door too hard it would rain tchotchkes like manna. The shelf wasn’t really our style anymore.

The dilemma came in the project of the timing. I just started one of these No Spend Month challenges a few days ago. I think it’s a really neat way to kind of reset our budget for the upcoming year and find a good base. But I didn’t want to sway from the challenge. So I went to the basement to see what I could find.

I bought this shadow box at the thrift store a while back because it was a veritable blank slate of possibilities. I used a tinted stain we already owned to give it that rich blue color and drew the design on with an oil-based paint marker. I searched etsy for inspiration for the phrase.

The arch print is from my glory college days where I had both the time and money to develop my own black and white prints. It’s a scene from the College of William & Mary. The clipboard up top originally came from the dollar store but had been hanging out in the basement for a while. I found a map of the University of Missouri campus online and changed the colors to match the room.

The shadow box is attached the wall on a hinge I found on my husband’s tool bench. I re-used the hooks from the shelf under the shadow box so they’re still in the same place but hidden. It’s like magic. Housewife magic.

I bought a wire basket to stash shoes by the door and cleared away a lot of coat bulk from the hooks we have.

Coupled with the gallery wall updating I did a couple weeks ago, it feels like a new room! Baby likes.

Christmas List 2014

Does anyone else love to know what other people are getting their kiddos for Christmas? It’s like the equivalent of the “What’s in your fridge?” amusement. I thought I’d share our gift break down for this year. As always, we stick to three gifts (If it was good enough for Jesus…) We’ll start with the baby:

Cohen will turn one just a couple weeks before Christmas. He loves music, shaking/throwing things, and cause/effect toys. Because he’s the youngest of three, I’ve seen with the others how some “baby” toys are discarded quickly. One of the keys to a good gift for the youngest kiddo is something interesting enough for his older sibs to play with him. With that in mind, we bought him this set of Citiblocs.

Wood toys are almost always a win, but the fact that this will extend the play of the wood blocks we already own certainly helps. Better still for the music-loving babe, they rattle and come in a bucket.

This chomp and count dino is a pretty obvious choice for the young toddler set this holiday. I mean you get to feed him. He sings songs and has a wheel you turn. AND he has a string so you can pull him along.

We have a bunch of the different Green Toys vehicles. They are a great size and have held up to some rough play. Cohen’s going to love pushing this tractor around, especially since it has a bucket in the back for hauling “stuff”.

Landon’s next! He’s three-and-a-half. It’s the first time we’ve given him gifts since he was diagnosed with autism. Which you might think changes things, but I think what makes this holiday the most different from previous ones is the fact that he knows what he likes this year and asked for some things specifically. One thing he was adamant about was that he would like some bridges to go along with his wooden train tracks. Thanks to Mimi and Aunt K, he’s got two bridges coming his way.

If you’re the mama of a preschool-aged boy, you probably have a few monster trucks laying around. Landon is a proprioceptive-seeker, so he loves the feel of the big rubber tires. I found this set over the summer on super clearance, so I’m glad the wait is almost over to see how much he loves it.

After more than a few mom recommendations and an extended play session at the children’s museum, I knew Magformers needed to be on this year’s Christmas list. Unfortunately, they are super expensive. I jumped at a deal I saw a couple months ago and am so excited these are wrapped under the tree!

Because they’re so expensive, it does seem like the kind of toy we’ll have to build onto with time, but I hope the 30 piece set is enough to get him excited about playing with them!

This last toy goes against pretty much every toy rule I have: it’s big, it only does one thing, it’s pieces are fixed and non-customizable, it’s plastic. But, he’s going to LOVE it. And sometimes (sometimes) that’s worth breaking all the rules for.

Lastly, Lucy. She’s turning five in a couple weeks. And she knows exactly what she wants. Oh boy…

We bought her a toy kitchen for her first Christmas and I must say that was the best investment. (This is the kitchen that has stood the test of time. And kids.)

She asked for some food this year so we got this wedding cake and ice cream set. I know that’s technically two things, but by shopping early I found them for a steal and could fit both into the budget.

Lovies and stuffed friends are adored around here so I know this Cinderella pillow is going to be a hit. Since she saw a commercial for Disney World that featured Cinderella’s castle, she’s become a favorite princess. I mean she’s no Elsa, but pretty high up there. ;)

Lastly, she asked for a calendar. The passage of time is so interesting to her and she wants to know what we’re doing every day so I thought this would be perfect. There’s one for older kids that has a month view so we could always upgrade to that one later.

Budget-wise, starting early definitely helped keep us on track. We started out with a budget of $50 per kid. Cohen came in $10 under budget, Landon was exactly on budget, and Lucy was $6 under budget. I used the extra money to add some books to their stockings!

So many stockings!

Family Pictures 2014

When you have three kids ages four and under, some times family pictures means running out into a field before the sun sets and taking a hundred or so pictures in 13 minutes until your son poops his pants, thus concluding the photo shoot.

Some times there’s not one picture of everyone looking and your sweet husband photoshops them together for you.

With her prince.

Just before he squeezed his brother’s hurt finger. You can guess how that went. #thirdkidproblems

Her sweet smile.

How she wanted to smile.

My love.

Who needed convincing that our pose did not look like a prom picture.

Hubba hubba.

Stud baby.

For real.

Blue eyes.

Heart explosion.

Double heart explosion.

And just for good measure, how about some outtakes?

[should have known. ;)]

Thanks Mimi, for the pictures. For capturing beautiful moments in our crazy, messy, beautiful lives.

For comparisons, sake: 2012 family photos.

Autistic Days

Landon just wrapped up his first month of school. It’s been interesting, to say the least. We wrestled so much with the idea of sending him to school. We wrestled so much with the autism diagnosis. We even wrestled with the idea of having a kid in special ed. But he’s in school. And in class with two other autistic kids. And I think he’s doing great. Funny how that works.

Today was a very “autistic” day for him. I think that’s one of the reasons we really dragged our heels on believing the doctors’ diagnoses: we said he’s not autistic, he just has autistic days.

On an autistic day he might wake up scared and disoriented. He might try to order himself by piecing together intricate train lines circling around his room. I’ll try to get him to eat breakfast but he won’t. Sometimes it feels like he can’t hear well because he’s so good at tuning me out. I ask him a few times to get dressed before I have to dress him like you would a baby. He has low muscle tone and his joints are so loose. He’s also double-jointed all over and it all just makes him a bit floppy. Limb by limb, we will prevail.

I talk to him about what we’re doing. He really likes pre-warnings. That’s therapy speak for telling him what we’re going to do next. We even have to do it for which side of his mouth we’re going to brush first or he’ll bite down on the toothbrush and not let go. We’re almost finished getting dressed when I see that he’s already brought the shoes he wants to wear today over. He is very particular about his shoes. And apparently a ninja because I never saw him grab them.

Sometimes I wonder what he thinks of me rushing him. He can get so caught up in his own little world. In his world it doesn’t matter if you’re late to school or have food all over your face. Some days it doesn’t even matter if you have an accident in your pants. But it does matter if someone else touches a piece of train track. Or changes the order of the cars you lined up.

When we leave for school it’s very upsetting that Chuck left some shoes on the stoop! And they got rain in them!! After we work through that, it’s time to walk to the van. To do that we have to walk down the sidewalk to the street. He’ll start a few times and go back and start over until he gets the cracks lined up with his steps just right. At the end of the sidewalk, it’s important that no one try to hold his hand in the street. Just this street, he’ll hold your hand anywhere else. Then it’s time to walk along the crack where old asphalt meets new. He’ll stop to say, “OoooOooh.” And point at the crack to which you must reply [any reply will do]. Then he’ll keep walking. He walks into the driveway and rubs along the side of the van with the right side of his body. Just a bit of proprioceptive input before we get in the car. And a bit of road dust.

One morning the walk to the car didn’t go as planned. I didn’t realize about the asphalt crack and when I tried to put him in the car he went into panic mode and kicked me in the face. My neighbor looked rather distraught and said, “Now, you need to be a good boy for your mama.” We had to get out of the van and do the walk to the car again. But it didn’t help. The walk was already messed up. So I wrestled him into the car. I’m positive it looked the same as if you attempted to put skinny jeans on a wet pig. But we got it. There was wailing. Huge crocodile tears swam down his cheeks. And off we drove to school.

School is three-quarters of a mile from our house. A left turn, a right turn, a left turn, and another right. It’s close. I got to school and tried to brush the dirt from the wrestling match off my jeans/arms/face. Literal dirt, Jay-Z. I open the door on Landon’s side and… he smiles at me. I unbuckle him and he hops down and grabs my hand. We walk to class and he greets his classmates with a “HiiiiIIIIIiiiii.” Whatever it was is forgotten.

I hold on to his backpack, not sure if I should warn his teacher about the rough start to his morning. I watch as he walks over to a table in the middle of the classroom and uses a chair to climb and stand on top of it. His teacher patiently walks over and says, “Landon. Tables are not for standing. We need to be safe friends. Safe friends sit at the table.”

Leaving the classroom, I feel a wave of relief followed by a wave of guilt. I have three hours to do the tasks that are harder to do when Landon is around. I can let my patience guard down a little. And then I feel the guilt.

They say parents of autistic children show three types of guilt: First, most parents pick themselves apart to see which autistic behaviors came from them. “Oh, I am a bit OCD at times.” “I have to force myself to look people in the eyes; it’s not a natural thing to do.” We think back to our pregnancies and deliveries and try to flesh out anything that might have been unusual. We scour our family trees to see if there’s a genetic lineage. Second, there’s the guilt that we’re not doing enough. 25-40 hours of therapy a week is recommended. We are doing 12 hours at school and about 2 at home. We’re working on getting on a couple of waiting lists for some private therapies. By some standards, we’re failing. How much of our monthly budget should we commit to co-pays? Should we start saving for an iPad for him to use for an augmentative and alternative communication device? Did I spend enough time with the other kids? The third guilt is the guilt I feel when I leave Landon at school and head home for three hours. The relief to know that the baby won’t be screamed at. Relief of not having someone follow me around hugging my leg and leaning against me with all of their weight. Oh my gosh, the guilt of complaining about my sweet precious boy hugging me. It could choke me. But it doesn’t.

When we go to pick Landon up we watch while he sits on a tricycle in the gym, away from all the other kids. Away from the kid who’s rolling a grape between his fingers mere inches from his face. He’s trying to follow the lines of the floor tiles while he pushes it along. He doesn’t like the pedals. He can’t figure them out just yet. Sometimes when he sees us he gets a worried look on his face because he hasn’t finished following the line yet and the teacher’s aide is walking over with his backpack. On the good days when he sees us he smiles. He has the best smile.

When we walk outside a plane flies overhead and even though it’s high in the air, the noise startles him and he covers his ears. But he loves planes and after the initial shock we can point at it and say “aiiiih-yah.” It took a long time for him to point at things. I try not to take that simple gesture for granted. When you go through a long and hard journey to get something simple, sometimes it’s easy to downplay just how much work it was. I’ve been labeling everything in my life for the last two years. Lately we’ve been labeling it and then trying to translate it to sounds Landon can say. “Van. vAh. Door! Doh. Landon up. Up! Arms. Ah! Time to buckle! Buh-oh. Bye bye school. Buh buh OOooo.”

When we get home if I don’t engage him, he will go to his room and shut his door to play trains. It’s almost scary to me how comfortable he is alone in his room with the door closed, but I wonder if that’s only because it’s been approximately four years since I used the potty by myself.

On bad days he doesn’t want to make the right sounds. He chooses an “easy” sound and repeats it. All day. Sometimes he only repeats it to me: “Do you want a sandwich for lunch? Bah.” Sometimes he stands in the middle of the kitchen turning in circles repeating the sound, “Bahbahbahbahbahbahbahbahbahbahbahbah.” I never know how many repetitive things I should let him do. That seems like a pretty safe one so I let him go for a couple minutes and then ask him if he wants to wear his vest.

The vest is amazing. It’s a weighted proprioceptive vest. He loves it. I think, to him, it feels like a tight hug the whole time he’s wearing it. And the weight makes his joints feel less wobbly. It doesn’t hurt that it makes him look like he’s a member of an elite S.W.A.T. team. We all love the vest. Recently we added a weighted blanket for nap-time and a weighted lap pad to try to help him sit at the table to eat. Sitting still is really hard! He has a hard time finishing meals because sitting still is so hard.

Autistic days are hard. But I’m thankful for them. And I’m thankful for days that are less autistic. I’m thankful that I get to spend so much of my time figuring out what makes Landon tick. Helping him cope with things that stress him out. Figuring out where the cracks in the asphalt are so that we can see new things together. I’m thankful that I get to be his mom. It’s a big responsibility to be in charge of someone so great. Someone with so much potential for greatness, primed to press positive change on the world.

Do You Have Autism? Yes or No?

Lucy knows Landon is different. She knows he doesn’t speak yet. So she sweetly asks him hundreds of questions each day in the same format:

“Landon do you want orange juice? Yes or no?”
“Landon do you want your grey shoes? Yes or no?”
“Landon are you taking Monkey to school today? Yes or no?”
“Landon will you play with me? Yes or no?”
…

All day.

At the beginning of June, Landon had a pretty intense evaluation by the school district to see which services he would qualify for when he graduated out of the early intervention program and came under their care. We were shocked by the results, and most shocked by the analysis that he was in the “clinically significant” range for Autism Spectrum Disorder. Autism wasn’t even on my radar. I’m ashamed to admit that when I thought of autism, I thought of the most severe and extreme cases of kids totally absent-looking, banging their heads on the walls. That’s not my kid. He loves people. Sometimes he loves them so much it hurts…

So I started this list. And I thought, ‘I’m going to make a list of Landon’s quirky behaviors and it will prove that all the things he does are just normal three-year-old things.’ And then I filled up the front and back of a piece of paper. Seriously? I started questioning every thing I was feeling. What was causing me to press so hard against this?

Armed with the school district’s assessment and my list, I took Landon to his three-year well check. The poor, sweet nurse practitioner who asked, “So how is everything going with Landon?”

“Well, sometimes he does things that are sort of weird. And maybe some of the weird things that he does are getting a little more weird.”

“What do you mean?”

“Well, last week I was outside grilling. I knew the grill was hot so I made sure to talk to Landon about it and why he shouldn’t touch it. I made him say hot [“ho, ho”]. I went in to get the food I was grilling and left him outside with my husband. When I came back, both hands full of food, he gingerly walked over to the grill and pressed his hands against it. He never screamed or cried, he only tried to rub the heat off when his skin began to blister.”

“That’s pretty alarming. Anything else?”

“Well, he likes to scream at his baby brother to watch him cry. It does not feel like menacing behavior, just exploratory. He builds elaborate train tracks in his room and gets mad if anyone tries to put actual trains on them. Actually, I made a whole list of unusual behaviors. Do you want to see it?”

“I think I’ve heard enough to know we need to consult someone with a little more expertise.”

And with that I left the appointment with a list of neurologists to consult 

If you’ve never thought of autism in the United States as an epidemic, you’ve never tried to get an appointment with a doctor specializing in diagnosing it. Wow. Three months. Six months. Every time we made a call, the waiting lists grew longer. We heard the importance of early intervention and we heard the hold music. Both lingering ominously.

When we finally got Landon tested, he did quite well. Autism tests were made for him: they’re play-based with only adults in the room. No other kids to fend off. There are snacks! And bubbles! He did well yet the doctor still said he had autism! How dare her! And then she began to talk “intensive therapy sessions”.

I left feeling like the only thing the doctor had proved was that he doesn’t have autism. He is a little puzzling. His receptive language is excellent. He’s funny. He LOVES hanging out with adults. Food is the way to his heart. He did great. Let’s get a second opinion.

We found another doctor. Very fancy titles. Professor at a very fancy university. If you leave a message with his office, he will call you back on Monday. He only makes calls on Monday. If you miss his call, you have to hope to catch him the next Monday. We missed his call. When we finally talked, he had the audacity to say it sounded like a severe spectrum disorder. It’s not severe. You haven’t met him. Everyone loves him. Severe?

During this time Landon started school. By God’s grace and divine intervention, his sweet teacher is amazing. VERY qualified. VERY educated. So I gave her a couple weeks to get to know Landon and then called.

“The neurologist said Landon has autism. Have you felt that to be accurate?”

“Well, I’m not one for labeling kids but I’m thankful to know you’ve been pursuing that for him because I’ve seen quite a few red flags during the first two weeks of school.”

“Oh?”

“Yes. I actually have a son and grandson with autism so I feel very comfortable to judge it’s characteristics.”

” Oh really?”

“I would agree with your doctor’s diagnosis.”

“…Oh.”

Five professional opinions later [but seriously…] I’m the only one questioning whether or not my son has autism.

And then came that moment. Wondering why I was still shocked to hear it. What does it really change? It only means we’ll commit more time to his therapy.

It’s not the end of the world. And it actually explains a lot. And calms some of my anxiety to know we could be on a path towards healing. Autism can be overcome. We love him so much. It’s an honor to fight this with him.

I think I’m the one who needs to do the most changing right now. I need to stop asking over and over if they’re sure that they’re sure that they’re sure he has autism. I need to change the question. How do I help my son be the best version of himself?

Our School “Plans” 2014-2015

If there’s one thing almost five years of parenting has taught me, it’s the need for flexibility. Flexibility is definitely the name of the game this fall.

If you’ll remember, last year we expressed a desire to be a homeschooling family. We still have that desire, but we also have some other factors to consider. I think we’ve talked about Landon’s challenges before so I won’t rehash them here, but I will say that his third birthday has been extremely bittersweet. Turning three means he graduates out of his early intervention program that has been supplying speech and occupational therapies to him for the last 14 months. His services will now be supplied by our county’s special education program. In order to make that transition, we had to first have an evaluation. I talked about that evaluation a bit here, but I’ll summarize that the results were a bit surprising for us. We had assumed we would be taking him to our school district’s early childhood center for speech therapy to supplement the tot school we are doing at home. We went to Landon’s first IEP (Individualized Education Plan) meeting with that in mind, where it was instead recommended that he go to the early ed center for three hours a day, four days a week exclusively in a special ed classroom. We left that meeting feeling rather shocked. We’d been told his therapists didn’t think he would qualify for much, but instead he qualified for the most intensive, maximum amount of therapy available. We asked the opinion of the therapists who have come to know and care for Landon over the last 14 months and they said they thought he would benefit from going to the early childhood special education (ECSE) preschool. After an incredible amount of prayerful consideration, we signed him up. We don’t want our desire to homeschool to impede upon what’s best for our children.

So here’s Landon when we walked over to his new school to register him this week. I’m really not sure how he’s going to do, honestly. I’m really not sure how I’m going to do, honestly. It’s hard having a child with extra needs. It’s hard when he fights me on everything [going potty, eating breakfast, wiping his face, getting dressed, going potty, sharing toys, not running into the street, not wanting to walk in the grass, wanting to eat leaves, riding in his car seat, not rubbing against the car, holding my hand in parking lots… You get the idea]. It’s hard to think of him needing something and being unable to express himself to someone trying to take care of other special needs children at the same time. And I know these are just mom worries. I know he’ll be fine. But it makes my heart hurt a little. And I might have started balling last week when a school bus drove down our street.

So that changed our “plans” for this year. We’ll continue to do Parents as Teachers with Cohen. We’ll have a pretty set schedule of taking Landon to school Monday through Thursday. And I’ve got big plans for Lucy.

And she deserves it. The thing all of the wonderful support and intervention programs we’ve been a part of fail to help with is the sibling support. I asked her if she was jealous that Landon will go to a “real” school and she said, “No! I’m glad he’s going so that you and I can do big kid school and he won’t mess it up!” Ugh…

Last year we started the year doing a themed letter of the week concept for tot school. We got to ‘N’ and she said, “Mom, I know my letters, I like it better when we play games.” Well, okay then.

We had a few decisions to make regarding what level we wanted to start her at. Every kid is so different and learns so differently. So I’d say we’re starting out on a K4 level. She’s crazy smart but sometimes things look backwards to her and she’d rather spend her time playing  and imagining things. So I’m trying to pull something together that’s catered just to her. I have hopes that it will be heavy on the play-based learning, gentle on the standards-based skills, and light on the worksheets– you know all while being relatively inexpensive and not requiring too much of my time to plan or put together. No big deal…

Doll Fashion Girl

If you’ve met my daughter, you know she is super creative. Her thoughts, her drawings, her imaginative play– her creativity knows no bounds. When she asked Chuck and I if she could have a blog a few days ago we laughed and laughed. And then we got on board. We asked her what she wanted to name it and she said Doll Fashion Girl, which I imagine comes from the song she serenades us with that goes, “I’m a fashion Girl. I’m original.”

Instead of using the artkive app like we have in the past, we decided we’d throw her creations up here. Her first portfolio. I love this kid.

Let’s Be Serious

Where to begin?

How about a nice pie chart of my mental focus presently:

[Forgive me, husband, for the utter and complete lack of scientific rationality in this “chart”.]

I don’t think I could keep this up for long. My mind feels spaced out. And maxed out.

Some things I love and am thankful for- relationships and life. Ever-present and often redeeming.

Usually I like feeding the kids and creating fun lunches, but lately they want to eat constantly. Like every hour. Which leaves me in some constant flux of, “No you can’t eat; I just fed you.”, “Yes you can eat; what would you like?”, and “No you can’t eat; I haven’t even finished cleaning up from the last time you ate.”.

Some things are fleeting. I mean I know Cohen will eventually stop waking up at night and I won’t spend my days thinking about how tired I am. Potty training will eventually click for Landon. Right? Right!? I will eventually get everything packed for vacation.

The summer bucket list and compensating for focusing on Landon so much are related. As in, the bucket list was created in an effort to not get swallowed up by all of Landon’s present needs. To be intentional about having a memory-filled and family-focused summer. [I’ll share our list soon.]

And then there’s Landon’s therapies.

Hm.

A long time ago I told you he qualified for our state’s early intervention program. When he was tested at 22-months-old he scored as a 9-month-old for his verbal communication skills and an 11-month-old for his adaptive behavior skills [which is sort of hard to briefly explain, but that’s basically self-care and fitting into his environment]. We started speech therapy and soon added occupational therapy and they changed his life. Really. I am so thankful that I trusted my instincts to have him tested when people were telling me he was “just a boy” and he would “grow out of it”. He went from not having the trunk support to sit unassisted for more than three minutes to being able to climb and run and jump and… anything! He worked hard to gain strength and overcome low muscle tone. He is a champion! But speech-wise… He plateaued. Progress has been hard and very slow-going.

Our therapy coordinator made all the arrangements so we could begin the process of transferring his therapy to our school district when he will age-out of the early intervention program at 3-years-old. We had our yearly meeting, where we talked about the goals for Landon we set a year ago, and I couldn’t help but get excited about all the progress he’s made. So he’s not saying any spontaneous words, but he’s also not inappropriately touching strangers! I left the meeting feeling prepared for his eligibility evaluation with the school district.

The day of the evaluation came and [thankfully] it fell the week after school was out for the summer so Chuck watched the other two kids while Landon and I went to the meeting. I knew there were going to be a lot of people there because I’d been sent some paperwork which listed everyone’s role [This is the name of the speech therapist, this is the name of the school psychologist, etc.]. Inside the evaluation room, Landon and I were introduced to the six [SIX!] other people present.

Did I mention he was in underwear? I’m in the ‘ditch the diapers and don’t look back’ camp. Yeah…

Because Landon is amazing and one of the nicest, friendliest kids I’ve ever met, he wasn’t at all intimidated by all the new faces. He jumped right into playing with the puzzles, cars, and blocks with new “friends”.

And then every few minutes he would start holding himself and gesturing that he needed to go potty. We’d scurry down the hallway, out of the office, and into the public restroom where his eyes would widen taking in the stalls and his hands would cover his ears when someone turned on the faucet or flushed a toilet. [Public restrooms seen through the eyes of someone with sensory issues are downright hellish]. Overwhelmed by the whole experience, he would throw himself on the restroom floor [gross] in an effort to control his sensory input. I would then pick him up, dust him off, and walk him back to the evaluation room. [repeat x 15]

Eventually, two and a half hours [and one very big soak-the-shoes kind of potty accident] later, the evaluation was complete. The first thing one of the evaluators said was, “I know we’ve just met him, but I’m pretty sure we’re all already in love with your son.” Yeah, he definitely has that effect on people. We were then told he qualified for therapy related to communication, adaptive behavior, and social/emotional behavior [We assumed he would only qualify for his speech]. He was cited with having “sensory issues”. The speech therapist said she’s very confident he has both oral and verbal apraxia. He just barely scored in the “clinically significant” range for autism spectrum problems, which is the rank above “at risk” where he scored for attention issues [I feel compelled to add here that I genuinely don’t believe my son has autism, but that he has some characteristics that autistic people also tend to have].

[In case I lost you at apraxia.]

source

So kind of a big deal, right? And totally worthy of all that head-space and processing time. I’m trying to prepare for this meeting coming up in the next few days where we’ll decide how to get him therapy [Like: Should he go to a special preschool? Should we start paying for private speech therapy?]

But [and maybe this is crazy] my biggest take-away from reading the 14 page report I received about my son after the evaluation was:

My child has special needs.

I mean I’ve said that before. And it doesn’t change how I see him. But I usually minimize it by thinking, “There are so many kids with so many problems worse than this.” Maybe that’s doing my family a disservice. Maybe that’s dismissing the extra care everyone needs: Landon to receive extra help and patience and Lucy and Cohen to receive more intentional time. Sometimes just the thought of that is overwhelming. I’m scared there’s not enough of me. That as I give more of me, the quality given decreases. I can certainly see that to be true for my household duties. Nothing ever feels clean. Dinner always feels hasty.

How should I spend my time?

I had Lucy answer the questions for this Five Love Languages of Kids survey and, much to my surprise, her top love language was time. I thought for sure it was going to be receiving gifts because she never forgets who gives her things. I had to dig a little deeper and ask her what kind of time spent with me she was looking for. She doesn’t like shopping or running errands. What she wants is for me to sit on the floor and watch her play Barbies. She wants me to play board games with her [and let her cheat ;)] while the boys sleep. She wants to make cookies and brownies and cupcakes and layered cakes and pancakes and waffles. She wants me. A lot of me.

I pray a lot about not feeling guilt. Guilt that I don’t have time to give her. Guilt that I’m not spending extra time snuggling Cohen after I feed him. Guilt that I didn’t make Landon attempt to say the word of what he wanted for lunch after he brought it to me. Guilt that we didn’t do our ‘first words’ flash cards today. Guilt that Chuck gets my gizzards [unwanted extras if you weren’t raised Southern ;)].

That’s where we’re at right now. If you’ve made it this far, I feel fairly certain you care for our family. Thank you. Seriously. From the bottom of my overflowing heart.