If You've Met One Person with Autism...

About a month ago I took the boys to Field Day at Clara Beth’s school. If you have an elementary student and you’ve ever been to Field Day, you know exactly what I mean when I say it is SENSORY HELL. Loud, chaotic, overwhelming, hot, and right in the middle of nap time. But my big girl really wanted me to be there, so I was there. Needless to say, it was a tough afternoon for my sensory challenged boys. Micah had it easy. I strapped him in the stroller, gave him his pacifier, and let him veg out to his heart’s content. Jude, however, wanted so much to get out, run around, and play with the big kids. He was overwhelmed and struggling, but he wasn’t going to let it stop him. I watched him fight his way through his sensory overload and manage to have a pretty good time despite the challenges he was working through. I was feeling so proud of him, because I knew how hard this was for him, and he was handling it like a champ.

So imagine my frustration when the following happened: One of the teachers walks up and starts talking to me. I don’t know this teacher well, but she knows my daughter (because, of course, everyone in the school knows my daughter), and apparently she’s heard that Clara Beth’s younger brother has autism. So she walks up to me, and in an overly sympathetic and unnecessarily slow voice, with extra enunciation, she asks me “How is he doing? You know, with his schooling?”

I say “Oh. Well, he’s doing really well. He just ‘graduated’ from his early intervention program and he’s about to start at a typical preschool next month.”

“That’s great! You must be thrilled. Ya know,” she begins to whisper now, like she’s telling me a special secret… “I have one in my class this year, too.”

Wait. She has one WHAT? A boy named Jude? A 3 year old? A puppy? Uhhh.....

But she goes on…”He’s pretty verbal for an autistic kid, and usually he does fairly well, but he does have his Rain Man moments…”

Stop. Did she really just say that to me? I think she actually did. Um, I’m fumbling around in my brain, trying to think of a response that doesn’t involve cuss words. I've got nothing…

Doesn’t matter that I’m speechless, because she goes on to tell me all about this kid in her class - a kid who sounds pretty darn incredible, but who shares nothing in common with my son except a diagnosis.

But it gets better. In the middle of her monologue, the wind starts blowing pretty hard. I’m holding a squirming and impatient Jude (who this teacher has not yet said a word to) in my arms, and he starts to complain. “I don’t like that wind! I don’t like it, Mama!”

“Ohhh,” gushes the teacher. “That’s wonderful! How great that he can tell you that he doesn’t like it. That’s so wonderful! You must be thrilled.”

Now I'm biting my tongue. She thinks she knows Jude, yet she still hasn't even attempted to talk to him and has barely even looked at him. I want to tell her that my son speaks in complete sentences and has verbal skills at the high end of normal for his age. I want to tell her that he bears little to no resemblance to Rain Man, except that he might be able to do that crazy math stuff in his head. I want to tell her that she sounds kind of ignorant, and as a teacher shouldn’t she know that no two kids with autism are alike? I want to tell her that he probably has more going on in his brain than she does. But I'm pretty sure I won't be nearly that articulate. Plus that last part is kind of mean. It's totally true, but still mean. And I'm afraid that the words that will actually come out of my mouth might get me kicked off the elementary school grounds, so I just laugh and say “Oh yes. He has no trouble letting us know when he doesn’t like something.” Then I walk away. As quickly as possible.

It’s not the first time something like this has happened, and it probably won’t be the last. When I mention that my son is on the spectrum, people love to start telling me about their cousin’s neighbor’s grandson who is also on the spectrum. Why do they feel the need to do this? Because they assume that Jude must be just like that other child. You know. Because of the autism and stuff.

There’s a saying that goes “If you’ve met one person with autism, then you’ve met one person with autism.” Clever, eh? They call it a “spectrum” for good reason.  Over the past year we’ve been privileged enough to get to know many kids on the spectrum, and I can’t think of a single one that is much like Jude. I can’t think of any two who are much like each other. They’re all unique. They’re individuals. They have different skill sets, different abilities, different gifts, different habits, and different challenges. They may have some similarities, but even their “spectrum qualities” look different from one kid to the next.

Most people don’t know this. And usually it’s because they don’t really know anyone on the spectrum. So I wanna show you a glimpse of what the spectrum looks like in our house. If you follow me on Facebook, you’ve probably heard a lot about Jude, but most of you haven't spent much time with him in person. You probably think you have an idea of what he's like. But I bet you're at least a little bit wrong. You probably don't realize that in many ways he’s just a typical 3 year old. But he’s not typical. Not really. But at the same time, he kind of is.

He’s silly. He loves to make us laugh. He loves to play games.  He sometimes forgets to make eye contact. He throws temper tantrums. He yells at his sister. He thinks his sister is the coolest kid in the world and his very best friend. He has a hard time sharing. He loves music. He makes up his own songs. He loves books and gymnastics. He plays hide and seek. He’s super sweet and gentle with his baby brother, except when that baby brother steals his toys. He struggles with change. He thrives with routine. He screamed every morning for 2 months, sometimes for over an hour, because he didn't want to wear short sleeves when the weather got warm. He didn't like the way his arms felt different without sleeves. He’s brave, but cautious, especially about trying new things. Sometimes I'm amazed at how brave he can be. He disengages when he feels overwhelmed. His coping strategy is to hum to himself and quote movies under his breath. That’s how I know when I need to intervene and intentionally engage him. He is a very concrete thinker. Creativity doesn’t come naturally to him, but his imagination is blossoming. He notices every detail of everything around him. He remembers everything. When he’s sad, he wants a tight hug and a big tickle. He still thinks my kisses make everything all better. 

He’s beautiful. He’s brilliant. He’s highly verbal. He’s sensitive and empathetic. He’s social and affectionate. And he’s on the autism spectrum.

Here are a couple videos, because unless you see him in action, you'll have to take my word for it when I say that he's amazing...

In this first clip we're playing our favorite game, Roll and Play. Jude can't read, of course (he's only 3, after all...), but he memorized all the cards the first time we played the game. He does stuff like that. Have I mentioned that he's amazing?

This second video is a 4 minute interview with Judle Bug. He's such a silly boy...

Home

Home:

1. one’s place of residence

            2. the social unit formed by a family living together

3. a familiar or usual setting

Tonight I will tuck my children in to bed in this house for the last time. Our home.

When we first entered this home, it was just the two of us…Chris and me. We were full of hope, full of dreams, ready for new beginnings. Nine years later, we are a family of 5. Three fresh, sparkling new lives have emerged in this home. Thirty new fingers and thirty new toes. Three bright faces that didn’t exist just a few short years ago. They have called this place home – the only home they’ve ever known. Their first home. And tomorrow we will say goodbye, walk out the door, and leave the key behind. Someone else will call this place home, another young couple who is full of hope, full of dreams, ready for new beginnings.

We are ready to move on. We’re excited about our next house…about having space to spread out. But as I sit here in this familiar room and look around, the memories come crashing all around me.  Most are beautiful, some are painful. Our first wedding anniversary, when we decided it would be gross to eat the dried out piece of wedding cake we had stored in the freezer. Arguments about furniture, money, and the best method of loading the dishwasher. Walking through the front door and collapsing in bed a few hours after finishing my first full marathon. Celebrating the day Chris finished his intern year. The first positive pregnancy test.  Coming home from the hospital and finding our living room decorated with streamers  to welcome our baby girl. Accidentally locking myself out of the house when our 3-week old baby was alone inside. Chris falling asleep post-call on the living room floor.  Midnight strolls through the hallway to calm a crying baby. Coming home from Thanksgiving to discover our house had flooded from a leaking faucet. The bathroom where I realized we were losing our second baby to a miscarriage. Learning to crawl, first steps, first words.  A year and a half of negative pregnancy tests. Tears of joy and relief when there was finally a second pink line. More first steps and first words. Lots of bubble baths in the hall bathroom. The couch where I laid down and wept after what felt like a devastating diagnosis.  Pancakes on Saturday mornings, sometimes shaped like bunnies. Dancing in the living room and soccer in the back yard. All 3 kids somehow finding their way to our bed for early morning snuggle parties. Temper tantrums that seemed to last forever. Play-doh on the carpet and black crayon on the walls.  Doors slamming. Feet stomping. Lots of yelling, pouting, crying, and giggling. A lot of LIFE has happened in this home.

Growing up as a military child, I never lived in the same house for more than a couple years. No place in my life has ever felt more like home than these walls, these rooms, this house. Part of me doesn’t want to let it go, to relinquish what’s comfortable and familiar. By most definitions, this house is my home…my place of residence and a familiar setting. Our new house doesn’t feel so familiar. It feels foreign and intimidating. The new house is fancy. It has wainscoting galore, crown molding, tons of granite and tile, and deluxe Kitchen Aid double convection ovens. I’m not such a fancy person. I don't know how to use even one convection oven. But none of that matters because I’m clinging to the second definition of home: the social unit formed by a family living together. These four people I live with, they are my home. They are where I belong. We’ll take our memories with us, both the beautiful and the painful. We’ll take them to our new, fancy home that still feels foreign and intimidating. We’ll hold those memories tightly, and soon they will grow and blend in to new memories. More pancakes on Saturday morning. More temper tantrums. A baby who has yet to take his first steps. More early morning snuggle parties with all 5 of us piled in bed together.  More Play-doh on the brand new carpet. More soccer in the new back yard. More yelling, more dancing, more crying, and more giggling. We have lots more LIVING left to do…in a new house with new walls, new rooms, new memories waiting to be made.  A new HOME.

So goodbye, house. Thank you for sheltering us and providing us with a safe place to belong. We are praying for the new owners. We’re praying that this house will provide them with the same safety that it provided us. We’re praying that this house will continue to be filled with life, love, lots of giggling and snuggling, and the huge presence of Jesus. We’re praying the same thing for our new house…our new home.

And I’m praying that someday I will figure out how to use those fancy new double convection ovens...

One Year Ago: Remembering How Far We've Come

One year ago today.  We had been waiting weeks for this appointment. We had begun to realize that something wasn’t right with Jude. He was losing language skills quickly. He was withdrawing socially. He didn’t want to play with us. He didn’t want to dance. He avoided eye contact. He sat and stared for long periods of time. His expression was glassy and glazed. He was slowly disappearing right before our eyes.

Jude - Christmas 2011

January 2012

One year ago today. We were worried. We were afraid. It was a gut-wrenching, heart-breaking kind of fear, the kind of fear that makes it hard to breathe. I wasn’t sleeping. I wasn’t eating well. I cried multiple times a day. And I was 5 months pregnant.

***February and March, 2012. He was such a sweet boy, but as I look back now I realize that he was just overwhelmed with life. Too much sensory input for his little brain to process.


One year ago today. We had talked to our pediatrician, and she shared our concerns. So we made the appointment. And then we waited. We researched everything we could, trying to find another explanation than the one we feared was true. With every breath, I prayed. I begged God to let the doctors tell me that our Judle Bug was okay.

One year ago today. The day of the appointment finally came. We drove to the medical center. My hands were shaking as I filled out pages and pages of questionnaires. I fought back tears as we explained our concerns to the doctor. We spent 4 agonizing hours having our little boy evaluated by some of the best developmental psychologists in the country. And again I begged God not to let me lose my baby boy to the disorder that I feared was taking control of him.

One year ago today. Fear. Anxiety. Worry. Hope. Dread. These were a few of the things we were feeling as we trudged through that day. My stomach was in knots as we waited for the doctors to add up Jude’s scores. 

I’ll never forget the doctor’s words as he sat down with us at the end of the evaluation. “Jude’s profile is very complex,” he said. “He has a lot of strengths, but I also see some areas of vulnerability….At the end of the day, I’m very concerned about the possibility of an Autism Spectrum Disorder.” 

And there they were. The words that changed our lives…one year ago today.

**Another day I will never forget: April 4, 2012 - Jude's first day at his new school. We will forever be grateful for the therapists and staff who work at this treatment center. We owe them our son's life.

***Learning to explore the world around him...playing in sand, reading books...so many new things to learn! And as he explored and learned, he gained confidence. Little by little, he became less overwhelmed and more able to interact with the world and the people in it.

It hasn’t been an easy year, but it’s been an amazing year. When you look at the progression of these pictures, do you see what I see in his face? Do you see his confidence grow a little more each month? Do you notice that he's less overwhelmed, less afraid, more engaged? Do you see the glazed expression disappear from his eyes? Do you see him blossoming? Do you see him thriving? Do you feel the same joy that I feel when you realize that instead of shutting down and checking out, he is LIVING and ENJOYING LIFE?

Jude is not the same child who walked in to that evaluation one year ago. He speaks in complete sentences. He laughs. He dances. He makes jokes, and he loves to be silly. He plays appropriately with toys. He greets his friends and looks them in the eye. He memorizes and comprehends unbelievable amounts of information. He soaks in every detail of the world around him. He expresses his emotions by telling me when he feels sad or angry or frustrated. He throws typical temper tantrums. He is learning to adapt to changes in his routine. He is amazing in so many ways.

***The change in him is amazing. With each month that passes, he gains more skills and better coping strategies. We have loved watching his fun little personality bloom before our eyes.

But it hasn’t been an easy road to get here. There have been many sacrifices made along the way. We’ve spent much of our savings on Jude’s therapy. We have given up all of our free time and the majority of our hobbies. I have neglected most of my friendships, and as a result I’ve entirely forfeited my social life, and pretty much my sanity along with it. I’ve been battling depression, anxiety, and loneliness for months. My prayer life is weak. My relationship with God is shaky. I’m several months overdue to see the dentist, the eye doctor, and the nephrologist, and now my kidney stones are flaring up again. Chris and I haven’t had a date night in longer than I can remember. It’s been a hard year, and there are still more challenges ahead. Over the past few weeks I have once again begun to feel overwhelmed and anxious about the decisions we are facing in the near future. Once again, I’m finding it hard to breathe, hard to sleep, hard to eat.

At the moment, though, none of that matters. For this moment, I just want to look back and remember where we were one year ago today. Because sometimes it helps to look back and remember how far you’ve come.  When the road ahead seems too overwhelming and the challenges seem too big to face, it helps to remember that you’ve felt that way before. One year ago today I didn’t think I could continue putting one foot in front of the other. I wasn’t sure I would be able to walk the path God had chosen for me. But somehow, miraculously, God provided just enough grace for each day. Grace for the moment.  I did continue putting one foot in front of the other, even when I didn’t think I could. And that leads me to believe that there will continue to be enough grace for each day ahead. Enough grace for each moment, even when the moments are hard. One tiny step at a time.

***We can't imagine what our family would be like without his sweet, bubbly, silly, fun, affectionate, sensitive, lovable personality!

***Learning to play...and having fun in the process!

It’s amazing what a difference one year can make. And sometimes you need to look back and remember the fear, remember the sadness, remember the worry, remember the pain. Sometimes looking back to remember how far you've come is the only way to find the courage to face what’s ahead. 

Sometimes it's good to look back and remember.

Surviving the Holidays

The holidays can be tough for families with young kids, especially those of us with kids who don’t do especially well with change. Traveling, new people, new surroundings, new sensory input, lots of activity, stressed-out parents…it’s enough to make most young kids act like crazy hooligans. Our 6 year old has always had a hard time over the holidays. The lack of structure and unpredictable schedule is challenging for her, but the sensory overload that results from rooms full of people, new foods, lots of commotion, and pent-up excitement is more than her tiny little self can handle. Her coping mechanism is to scream, cry, yell, and stomp. Always has been. It’s very effective. As soon as I hear the screaming begin, I know it’s time for her to take some time alone in a quiet room with a favorite book. But I can’t tell you how many times I have wished that we had known how to help her cope with her sensory overload BEFORE she reached screaming/crying/yelling mode.

 Then along came Jude. This year we knew the holidays would be especially tough for him. New people and new surroundings can be almost too overwhelming for him, so we knew we would need to do some major preparation before the holidays arrived. Thankfully, we had the help of a team of professionals to give us ideas and suggestions. We used their ideas not just for Jude, but also to help prepare Clara for the upcoming chaos. After implementing these strategies, I’ve become convinced that most young children, not just kids on the autism spectrum, could benefit from these ideas. I just wish someone had given me these ideas when Clara was younger. It might have saved us from pulling our hair out every year over Christmas break!

So for those of you with young kids, file these ideas away until your next out of town trip, or next Christmas, or any time you know there will be a major change affecting your child’s schedule. It just may prevent a few premature grey hairs…


 --Social Stories: This is a fun little tool that we’ve started to use fairly often around our house. Any time we will be doing something out of our normal routine, we write a social story. It helps prepare Jude for what’s coming so he is not surprised when the time comes. For a kid who likes predictability, this is a simple way to ease him through transitions.

 If you’re not familiar with social stories, here is a short description of what they are and how to write them: How to Write Social Stories. The article focuses on using social stories for children with autism, but they can be helpful for any young child, since children generally struggle with visualizing new things. Writing social stories is a new skill for me, and I’m certainly not an expert, but here are some examples of social stories we used over the holidays:

Christmas Tree Social Story

Opening Presents Social Story

Going to Grandma's House Social Story

Going Home Social Story

 --Opening Presents: This can be an overwhelming experience for little kids. I've stopped counting the number of friends who have told me that their 2 year old or 3 year old or 7 year old melted down on Christmas morning right in the middle of present-opening. It's even more challenging when there are cousins and aunts and grandparents around - more people make for more presents, more chaos, more sensory input to process. So this year we spent lots of time preparing for Christmas morning. We started with the Opening Presents Social Story so Jude would have a visual idea of what to expect. Each child's present was given a specific colored tag. Jude knew that any present with a blue tag was his, so he could only open presents with a blue tag. I put 3 clear plastic bins on the floor next to the Christmas tree. Each child has his/her own bin with his/her picture taped to the front. After opening their presents, they put their gift in their own special box. We had several practice present-opening sessions leading up to Christmas morning. I bought the kids several small but fun gifts (like light up toothbrushes, rocket straws, Play Foam, Boing Putty), and wrapped them before Christmas. After reading the social story, we sat down by the Christmas tree, and each child got to open 2 presents, then follow the steps of saying thank you and placing the toy in his/her box. After we finished opening gifts, the kids could choose one gift from their box to play with. We did this 4 times before Christmas. The kids ended up opening all their presents from us before we left on our trip. That way there were fewer gifts (meaning less overwhelming) to open on Christmas morning at Grandma's house. I think we'll do this every year from now on - open gifts a few at a time in the days leading up to Christmas. Who says they have to wait till Christmas morning??

--Pictures of Family/Friends: About 2 weeks before traveling, I printed off pictures of every family member’s face who we would see on our trip – 2 different close-ups of each person. I laminated the pictures and cut them out. Since we don’t see many of these family members often, we went through the pictures a few times with Jude and Clara to make sure they knew everyone’s name. Then we played a Family Memory game with the cards. The kids thought it was fun to try to make a match with their own faces, but while they were playing they were also becoming familiar with the faces. When we arrived at Grandma's house and were surrounded by “new” people, Jude knew exactly who they were, which made it less overwhelming and more exciting. 

--Pictures/Video of the House: A few weeks before our trip, we asked Chris’s parents to email us pictures of their house – anything that would help to make the house feel more familiar when we arrived. His mom sent pictures of the outside of the house, the breakfast table, the toy room, the family room, the bedroom…any place where Jude would spend a considerable amount of time. She also took us on a video tour of their home, starting at the front door, walking through the living room to the kitchen, to the family room, to the breakfast room, up to the bedroom where he would sleep. We looked at these pictures and watched the video several times before the trip. Both Jude and Clara thought it was so much fun. Then when we arrived, we entered through the front door, just like in the video, and Jude asked Grandma to say “Hi, come on in! Welcome to our house,” just like in the video. He knew exactly what to expect, pointing out little details, like the bunny in the corner and his blue chair at the breakfast table, that he had noticed in the video. He was so excited to explore the house, and not at all overwhelmed since it was already familiar to him. I was amazed at how helpful the pictures and video were, and now I only wish we had done this years ago!


 --Visual Schedule: We use a visual schedule at home almost every day. Visual schedules are great! It helps Jude visualize what's coming next in his schedule (hence the name....). These are especially helpful during transition times at home...coming home from school and transitioning to lunch and nap time, bed time, getting dressed in the morning, etc. The picture below is one of the visual schedules we use.  The pictures are laminated and have velcro on the back. They attach to a strip of velcro on a laminated piece of card stock. Sooo easy to make. We put the pictures up to tell him what's coming next. The schedule below shows what we do when Jude comes home from school: eat lunch, use the potty, read books, go to bed. After he finishes eating, he loves to pull off the "eat" picture, then put it in the "all done" pocket. He says "All done eating! Now it's time to go to the potty!" And he happily marches off to the potty. We can rearrange the schedule with different pictures, which is especially helpful when we're doing something out of his normal routine.We also have a giant strip of velcro attached to the toy shelf in the play room. That helps him know what to expect after play time. We can tell him "We're going to play for 5 minutes. When the timer beeps, we're going to clean up our toys, wash our hands, then eat dinner." He points to each picture, tells me the steps we're going to do, then marches off to play until the timer beeps.

We took the schedule along with us on our trip. It was especially helpful while we were away from home. Jude's therapist encouraged us to keep our schedule as predictable as possible while we were away. Obviously our schedule is different when we're visiting family, but as long as Jude knew what was coming, he  did well. When his schedule is predictable, even away from home and in a strange environment, he feels safer and more confident. He feels less overwhelmed, and he has fewer melt downs. I think every parent of a young child needs a visual schedule, or 2 or 3!

Here are some of our other visual schedules that we use at home. These were great to take on our trip because they were familiar to Jude, so he felt confident and secure following these routines. These are also great to use at home during his times of non-compliance and temper tantrums. When he doesn't feel like using the potty, he is more likely to comply if I say "Touch number 1 on your potty pictures. What does number 1 say? Pull down your pants...right! Do you want to pull them down or do you want me to do it?" Can you tell that I LOVE visual schedules???

Get Ready for Bed Schedule

Get Ready for School Schedule

Potty Schedule

We are certainly not experts in the field of autism, but with a lot of help and guidance, we've become fairly proficient at figuring out what helps our kids. These ideas may not work with all kids, but for kids who like predictability and structured routines, these are some pretty great strategies. I'm awfully thankful for Jude's very brilliant therapists!

A Peek in to My Child's Brain

Have you ever tried to understand how someone else’s brain works? I mean really, truly understand how it works. It’s not an easy thing to do, but it’s an important part of parenting. We’ve spent many years trying to figure out how Clara Beth thinks because it helps us know how to help her. Fortunately, her brain is nearly identical to mine, so I can almost always figure out what she’s thinking, how she’s feeling, and how to help her work through those feelings.

Jude, however, is an entirely different story. He is not at all like me. He is much more similar to Chris, and I don’t understand Chris’s brain. But to make things even trickier, he is on the autism spectrum, and even autism experts don’t understand how autism works. And to top that off, his is not a classic case of autism. The national autism expert who diagnosed him admits that Jude is a mystery even to him. So there’s not much chance that I will truly understand his fascinating, brilliant, complicated little mind, but since I’m his mom, I’m going to give it my best try.

Many years ago, before I had children, I read a book called The Curious Incident of the Dog in the Night-Time. It’s a fictional book, written by a man who does not have autism, but from the perspective of a teenage boy with Asperger’s. It’s fascinating. I haven’t read it for many years, and I am not endorsing it as an accurate portrayal of ASD, but my friend Shannon reminded me of a particular passage that describes my son well. It does not necessarily describe all individuals on the spectrum. There is a saying that goes “If you’ve met one person with autism, then you’ve met one person with autism.” The spectrum is a big place, and no two individuals on the spectrum are the same, but this quote from the book has been helpful for understanding my little Judle Bug:

“Most people are lazy. They never look at everything. They do what is called glancing… And the information in their head is really simple. For example, if they are in the countryside, it might be:

1. I am standing in a field that is full of grass.
2. There are some cows in the fields.
3. It is sunny with a few clouds.
4. There are some flowers in the grass.
5. There is a village in the distance.
6. There is a fence at the edge of the field and it has a gate in it.

         And then they would stop noticing anything because they would be thinking something else like, “Oh, it is very beautiful here,” or “I’m worried that I might have left the gas cooker on,” or “I wonder if Julie has given birth yet.”…

         But if I am standing in a field in the countryside I notice everything. For example, I remember standing in a field on Thursday, 15 June 1994…and I went into a field with cows in it and I stopped and looked at the field and I noticed these things: 

1. There are 19 cows in the field, 15 of which are black and white and 4 of which are brown and white.
2. There is a village in the distance which has 31 visible houses and a church with a square tower and not a spire.
3. There are ridges in the field, which means that in medieval times it was what is called a ridge and furrow field and people who lived in the village would have a ridge each to do farming on.
4. There is an old plastic bag from Asda in the hedge, and a squashed Coca-Cola can with a snail on it, and a long piece of orange string.
5. The northeast corner of the field is highest and the southwest corner is lowest and the field is folded downward slightly along the line between these two corners so that the northwest and southeast corners are slightly lower than they would be if the field was a flat inclined plane.
6. I can see three different types of grass and two colors of flowers in the grass.
7. The cows are mostly facing uphill.

         And there were 31 more things in this list of things I noticed but Siobhan said I didn’t need to write them all down. And it means that it is very tiring if I am in a new place because I see all these things, and if someone asked me afterward what the cows looked like, I could ask which one, and I could do a drawing of them at home and say that a particular cow had particular patterns on it…

         And when I am in a new place, because I see everything, it is like when a computer is doing too many things at the same time and the central processor unit is blocked up and there isn’t any space left to think about other things. And when I am in a new place and there are lots of people there it is even harder because people are not like cows and flowers and grass and they can talk to you and do things that you don’t expect, so you have to notice everything that is in the place, and also you have to notice things that might happen as well. And sometimes when I am in a new place and there are lots of people there it is like a computer crashing and I have to close my eyes and put my hands over my ears and groan, which is like pressing CTRL + ALT + DEL and shutting down programs and turning the computer off and rebooting so that I can remember what I am doing and where I am meant to be going…”

        

I think that describes Jude’s brain quite well. The boy is amazingly observant. We hung new pictures in the play room a few months ago – large, canvas prints. My 6 year old could have gone days without noticing them. Jude, however, saw them the instant he walked down the stairs. He stopped and just stared at them for several minutes. Then he started to describe them to us: “I see Mommy, and Daddy, and Clara, and Baby Micah. I see Mommy’s feet. I see Daddy’s feet. Baby Micah has a white shirt. Jude has a white shirt, too. Mommy has a pink shirt. Daddy has a blue shirt. Clara has a pink head band….” On and on and on, until he had pointed out every detail of both pictures. He didn’t move, he didn’t take his eyes off the pictures, he couldn’t enter the play room and begin playing until his busy little brain had processed every detail of this new sight. But once he had processed it all, he could happily play in the play room, and he hasn’t commented on the pictures ever since.

We traveled to my parents’ house for Thanksgiving this year. It was a sensory disaster for Jude. He had been doing so well up until that point that we had nearly forgotten he was on the spectrum. But he had not traveled or slept away from home for nearly a year, before his diagnosis, and we took for granted how difficult a new place would be for him. There were new people and so many new things for him to process. Chris would lie down with him at bed time, and Jude would point out everything he saw in the room: “Daddy, I see a wall. I see another wall. I see a lamp. I see a ceiling. There’s a square on the ceiling. There’s another square. There’s another square. There’s another square. I see a picture. It’s a picture of a flower. The flower is yellow. I see a bed. I see a blanket….” Poor little guy could not shut his brain off and go to sleep. And that was just the bedroom. My parents’ house is 5000 square feet full of new input. It was more than he could handle, and he began to melt down. We saw him revert to behaviors he hadn’t used in months...behaviors that were the equivalent of pressing CTRL+ALT+DEL on a keyboard...behaviors meant to shut out the world around him so his over-stimulated little brain could take a much-needed rest.

It took him 3 solid weeks to recover from that trip- 3 weeks full of intensive therapy, home visits from his therapists, very structured play time every minute of the day….exhausting, sad, and scary. Fortunately, he did recover, and we learned some valuable lessons about how to help him cope with new surroundings and new people. And thankfully, he did great on our trip to Chris’s parents’ house for Christmas. We learned how to help him process his new surroundings, and he learned how to cope with the challenges of a new place. We saw very few spectrum-like behaviors on this trip. We've been home for a week now and he is returning to his normal routine fairly seamlessly. No intensive therapy needed for re-entry this time around. I don’t think we would have been nearly as successful with this most recent trip if we hadn’t taken the time to figure out what was going on in his brain, why he was melting down in new surroundings, and how to help him work through it. 

And hopefully we will continue to learn as the years go by, with the goal of him eventually being able to confidently enter a room full of new people and not only function through the challenge of it, but to thrive. That’s our goal, and we feel encouraged and hopeful that he can do it!

But it all begins now, one step at a time, one small challenge at a time. And the better we understand him, the better equipped we are to help him. So it goes with all parents, which is why I’m such a believer in taking the time to understand our children’s brains, even when they seem to make no sense. ESPECIALLY when they seem to make no sense.

2013 Jar of Awesomeness

2012 was a tough year for us. It was a good year though, full of many amazing things. If I'm not careful with my thoughts, I have a tendency to dwell on the things that were hard rather than the things that were amazing.  I've noticed recently that my daughter has this same tendency. When she comes home from school and I ask her how her day was, she almost always says it was a bad day. When I ask why, she'll say something like, "Well, I didn't get to be the line leader....somebody stepped on my hand during story time...William said my head band was not pretty...my teacher said Ellie is the best artist in the class instead of me...etc." So I've stopped asking her how her day was, and instead I say "Tell me 2 things you loved about your day and 1 thing you didn't love."

I'm making an intentional effort to use positive words around her, to praise her when I see her doing something well (like sharing with her brother), to say out loud things I love about my life, to avoid complaining about things I don't love about my life, to take delight in little things throughout the day, and then make a point of verbally expressing my delight. It's good for her to hear these things, but it's also good for me to say them.

We recently started keeping gratitude journals, just Clara and me. I bought her this journal, and bought this journal for myself. Every night (or at least as often as one of us remembers), we sit down together and write 4 things - very specific things - we are thankful for from that day. It only takes about 10 minutes, but it helps us both end the day focusing on the good things in our lives. It's fun to see the things she chooses to be thankful for - things like her Bunny, getting to wear her jammies to school on Pajama Day, finding out that the doughnuts at school on Pajama Day were peanut-free, that she got to buy a pencil sharpener at the school book store, and that she doesn't have cancer.

Although the gratitude journals were a good first step, Clara Beth reminded me the other day that this will be an ongoing struggle. She said that 2012 was a bad year for her. She said there were so many bad days, more bad than good. She couldn't give me specific examples, just that she felt like she had a lot of bad days in the past year. Of course, in my opinion, this girl leads a very charmed existence. It's hard to even imagine how she can not love everything about her life. But I know her - I know how her brain works. I know her because she is just like me. And dwelling on the negative is something that comes all too naturally to me.

So we are starting a new tradition in this new year. I'm borrowing my friend Jen's idea to start a jar of good things. We call it our "2013 Jar of Awesomeness." I pulled out an old Mason jar and let Clara Beth decorate it with window markers. I bought colorful post-it notes and placed them beside the jar. Any time something awesome happens during our day we can write it down on a post-it note, date it, sign our name, and place it in the Jar of Awesomeness. We can periodically pull out the papers and read them if we need a quick reminder of the awesomeness surrounding us. Then at the end of the year, on New Year's Eve, we will empty the jar and read about all the awesome things that happened this year. And look...we've already started! There are 2 little awesome papers already in the jar from today. A day full of awesome.

Because sometimes we just need a little reminder. Awesomeness is all around us...if we only take the time to stop and notice it.

My Christmas gift...

Look at those faces. It's hard to believe that face belongs to the same child. The picture on the left was taken last December. It was an ornament Jude made at his Mother's Day Out program last year. When I found the ornament this year, I immediately started to cry. I cried because I remember that face - the glazed-over eyes, the lack of expression, and the little boy behind the face who wouldn't look at me, smile at me, talk to me, or interact with me.

He hadn't always been that way. Until about November of last year he had been a happy, funny, affectionate, silly little toddler. We had no concerns about his development. We didn't know it at the time, but about this time last year he began to disappear before our very eyes - trapped behind the emerging wall of autism.

Thankfully, that wall has been chipped away over the past year. Pieces of the wall are still there, and they may always be there. But he has worked so hard to push back against that wall, and today he laughs, makes jokes, dances, gives hugs, speaks in complete, grammatically correct sentences, loves to be the center of attention, and loves to make people laugh. He loves his little friends, his sister, his baby brother, and his mom and dad. He looks them in the eye and calls them by name. He asks them to come play with him instead of playing by himself. He argues when he doesn't want to do something. He lays down on the floor and throws a good old fashioned, typical 2-year old temper tantrum. He yells "No, Mommy! I can NOT going to!" He smiles at strangers and tells them hi. He sings in the car at the top of his lungs...songs like Jesus Loves Me, Twinkle Twinkle Little Star, and Jingle Bells. He negotiates over his food..."No, I eat 3 bites. Not 5 bites..." The first thing he does when Daddy gets him out of bed in the morning is run to find his sister, his baby brother, and his mom. He bursts in to the room and says "Hi Mom! There's Clara! And there's Baby Micah! I'm awake!!" He lights up any room as soon as he enters. He is a delight to everyone who knows him.

I almost threw this ornament away when I found it. It made me sad to look at it. In the end, I decided to keep it to remind myself of how far we have come in one short year, to remind myself of how proud I am of my little boy. That picture is part of his story, and it will always be part of his story. But thank the Lord, that wasn't the end of his story, and we pray that there are many chapters left to come.

This just might be my favorite Christmas gift ever.