Two Years Later

Two years ago today was the hardest day of my life.

Two years ago today we sat in the doctor’s office for hours with our tiny little boy. I have never been more afraid. I have never prayed harder. But despite all my praying and hoping and wishing, the doctor still said the words I didn’t want him to say: I think your son may have autism.

What a journey these past two years have been – a journey through the depths of fear and anxiety, through loneliness and depression, gut-wrenching sadness and heartache, but also a journey through hope, through perseverance, through acceptance, through triumph. The journey has changed me. I am not the same woman who walked in to that doctor’s office two years ago.  Regardless of what people may say, I am not stronger. My faith is not bigger. No, I am more broken, less in control, more transparent and quicker to acknowledge my weaknesses. I am more intimately acquainted with heartache and more empathetic towards others who are suffering. I have fewer friends, but the friendships that have survived are deeper and more meaningful.  I understand better the meaning of sacrifice and laying down your life for someone you love. The single greatest blessing that has come out of this journey is that I am more aware than ever of my own neediness – my need for community, my need for help, my need for support, my need for mercy, my need for a Savior.  Nothing in my life has robbed me of my self-sufficiency like the journey through an autism diagnosis, coming to the end of myself and realizing that I cannot do this alone, and more importantly, that I wasn’t meant to do it alone.

As for Jude, what an amazing two years he’s had. In his initial evaluation the psychologist reported that he was moderately to severely delayed in every domain. As a parent, that was a painful report to read. Today, our 3 year old is reading almost fluently – a skill that he picked up within minutes and almost entirely on his own, at THREE years old. He is doing math in his head that would challenge most first graders. He memorizes phenomenal amounts of information, and he notices every detail. He attends a typical preschool, where he participates and follows directions beautifully and plays happily with his friends. He is fully engaged and uses words appropriately to express his feelings, and he is secretly a favorite among almost all the teachers. He is sweet and gentle and kind. He is social and friendly and empathetic. He is imaginative and witty, and he makes us laugh every day. He is not the same kid he was 2 years ago – afraid and overwhelmed. Now he is brave and confident, and I really believe he can conquer anything.

So the question remains, and it’s a question I hear often: Does he really have autism? The best answer I can give is “I don’t know.” We may never know. He may never fit neatly in to any tidy category. He undoubtedly still has challenges, and he has several spectrum-like tendencies. His development cannot be described as “typical”, but “delayed” is no longer a word that describes him either. Different, perhaps. Special. Reserved. Observant. Cautious. Structured. Brilliant. Remarkable. Is it autism? Maybe. Does it matter? Not really. I realize that as he begins school he will probably need some sort of label in order to access certain resources, but the label doesn’t change who he is. To us, he’s just Jude, and he is amazing. And you can’t put a label on amazing.

To read last year's post on the one-year anniversary of the diagnosis, click here

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...

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.

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.

Here's What the Doctor Said...

It’s been a few weeks since Jude’s evaluation, but I’m only just now finding time to sit down and work through my thoughts. Since then I’ve spent lots of time talking to his therapists, to Chris, to friends, and to God about it, but I’m still not entirely sure what to think of it all. The evaluation did not go badly, but it was hard, and it wasn’t as encouraging as I’d hoped it would be. In many ways it was very eye opening. It gave us a better idea of where Jude is still struggling, and where we should focus our efforts in the future.

The point of these evaluations is to set up challenging situations for the child and watch how he deals with those challenges. Jude’s biggest challenges are in the areas of communication and social interaction. He definitely struggled with both those elements at the evaluation. Watching him that day was almost like watching the Jude of 6 months ago. He did better than he did 6 months ago, but he was clearly struggling. He hardly used any words at all during the first half of the evaluation. I know that many kids feel shy around new people and new surroundings, but it was more than just shyness. It was almost like he had forgotten how to communicate, and not just with words, but also with non-verbal communication skills. There were many things (like making eye contact, responding to his name, requesting help, etc.) that I know he’s capable of but just didn’t do. The doctor explained that it appears that Jude has not yet learned how to generalize those skills. In other words, he has learned how to use those skills so well at home and at school (settings where he is comfortable and knows what’s expected of him), but he hasn’t yet learned that he can use those same skills in new settings. It sounds crazy because it seems like that should be common sense, but for some reason Jude needs to be taught this concept. So we discussed ways that we can target the generalization of his skills in his current therapy program, and what we need to be focusing on in the future. After talking with his lead therapist last week, we have some ideas that we’re going to begin working on immediately, and some other ideas that may require long-term planning, including possibly selling our house and moving to another county (yikes!!). I’m trying not to focus too much on the overwhelmingly large long-term picture, and instead take one small step at a time. And thankfully, the amazing staff and therapists at his school have promised to help us every step of the way, which is good because we really have no stinkin' idea what we're doing.

 So overall, it was not a bad evaluation. It was, however, eye opening, as I mentioned before. I realized that I have pretty much been in denial for the past 8 months, not really believing that Jude is truly on the autism spectrum. I don’t think I’ve just been naïve. The psychologist we’ve seen at Vanderbilt is one of the country’s leading autism experts, and even he is not sure whether or not Jude is on the spectrum. He even brought in a colleague during this evaluation just to get a second opinion, and his colleague wasn’t sure either. And the therapists at his school are not convinced that he’s on the spectrum either. He just doesn’t quite fit the profile, although he has several red flags and areas of vulnerability. So I’ve had reason to be optimistic, and I still do. But at that evaluation…watching him struggle with things that should be natural and intuitive, seeing his skills break down right in front of me…it was the first time I admitted to myself that my child is probably on the spectrum. He's brilliant - that's becoming increasingly more clear. Alarmingly intelligent in many ways, but still on the spectrum. Admitting it doesn’t necessarily change anything. The spectrum is a big place – there are individuals with a wide range of skills on it. That’s why they call it a spectrum. Jude is exactly the same as he was before the evaluation, with all the same strengths and skills, but somehow it feels different. Admitting it to myself changed things. It made me stop and re-evaluate my expectations. It made me face my fears and begin questioning what exactly I’m afraid of. And most of all, it popped my little bubble of denial, which is sad because I really liked that bubble. I felt safe in that bubble – safe and warm and comfortable. And heaven forbid that I should have to go through anything in my life that makes me uncomfortable. I mean, if nothing else, God at least owes me a life that’s comfortable, right? Clearly, the cancerous lies of the prosperity gospel are alive and well in my subconscious mind.

 At the end of the day, we still have much reason to hope. Jude has proven time and again that he is very, very smart and very, very teachable. In just 6 months he has learned so much. Yes, those things should have come naturally, but they didn’t. Still, he was able to learn them, and now they do come naturally to him in familiar settings. Now he needs to learn how to continue using those skills in unfamiliar settings. He has the best team of therapists in the city walking along beside him, helping him and teaching him and loving him. His therapists are optimistic and encouraged by his progress, and so is the doctor. He ended the evaluation with these words: “I think it’s entirely within the realm of possibility that a few years from now we’ll be having a conversation about sending him to mainstream kindergarten, possibly without any additional supports in place. And I don’t say that to many of the families I see in here.” So that's definitely reason to hope.

 The doctor also said that had we not chosen to send Jude to the school we chose, had we not intervened as quickly and aggressively as we did, we would be having a very different conversation right now. He feels confident that Jude would have continued to decline in his skills and we would have missed that important window of opportunity. Hearing those words was very comforting. It reminded me of Who has been in control from the very beginning of this journey. Once again, we find ourselves facing some major decisions in the coming months. Once again, things feel uncertain and unsettled. Once again, I’m unsure where to let my emotions land– on realism or hope. I can choose to feel overwhelmed and afraid again, or I can choose to look back, see how He has carried us through this all along, and sing “Great Is Thy Faithfulness” at the top of my lungs. My voice might be a little shaky and out of tune. I might stumble my way through, forget the words a few times, and hit several wrong notes. But I can choose to keep on singing anyway. Because after all, it’s not really about me and how good I sound, is it?

 Again, Jesus Calling came through with exactly what I needed to hear. I read this the other day and was brutally reminded again that it’s time to take my eyes off myself and what I want from my life:

 “Give up the illusion that you deserve a problem-free life. Part of you is still hoping for the resolution of all difficulties. This is a false hope! ...Instead of seeking perfection in this fallen world, pour your energy into seeking Me: the Perfect One…When things seem all wrong, trust Me anyway. I am much less interested in right circumstances than in right responses to whatever comes your way.” 

 Dang it. So I’ll let out a big sigh, take another deep breath, and keep trudging down this rocky path of sanctification. But look at the cute little buddy I get to take along with me!

Update on Jude

Jude has an appointment at Vanderbilt with the developmental psychologist on Tuesday, so I needed to take some time to re-evaluate how he's doing. There's A LOT of information here, mostly as a way for me to keep track of what we need to discuss with the doctor. It may be way more detail than anyone else is interested in, so feel free to skim the text, skip to the end, or just look at the cute pictures. I promise I won't be offended :)

Finally, I’m sitting down to write an update on Judle Bug’s progress. The problem is that I hardly know where to start. He’s come so far since my last update! Let’s see, where to begin…

First of all, Jude’s language skills have just exploded over the past month. He was doing well before with his speech and language, but he really has finally hit that exploding point. He’s stringing together multiple words, like 5 or 6 or even more, and sometimes making complete, grammatically correct sentences. In fact, earlier this month we took him to Vanderbilt to be evaluated for a research study being done on toddlers with speech/language delays. Jude did NOT qualify for the study because he doesn’t have a language delay anymore! A score of 85-115 is considered within normal limits. Jude scored 112. That’s amazing. He was at the HIGH end of normal! His speech therapy has definitely been helping!

Here are some examples of things he’s been saying:

--“Mama, I play with Baby Micah.'

--Before breakfast is even ready, he climbs in to his booster seat and says “I ready, Mama. I ready for pancakes!”

--“Look, Mama! Fish is swimming.”

--“All done Mommy hold Baby Micah.” (That’s my cue to put the baby down and give Jude some attention.)

--When Clara took his car, he very calmly said, “Clara, that’s Jude’s car. It’s Jude’s turn car. It’s not Clara’s turn. It’s Jude’s turn.” (I was super proud of him for that one!)

--“I want play Silly Faces game. I ready Daddy play Silly Faces game.” (Chris’s cue to hurry up and go play the Silly Faces game with Jude.)

--After coming home from school, “I see my friends at school. I see Robbie. I see Grant. I see Abby. I no see Margaret (Margaret wasn’t there that day). I fun at school, Mama. I had fun with Miss Lori.” Um, AMAZING!!!

--“Look, Mama. I see zebra. I see two zebras.”

He’s using multiple and complicated parts of speech- possessive, plural, verbs, present progressive tense, prepositions, etc. And even more importantly (to me, anyway), he’s using his language to get the attention of other people and point out things in his environment. It seems minor, but it was one of the red flags we saw earlier this year...he didn't feel the need to point things out to other people just for the sake of social interaction. Jude would get my attention when he NEEDED something from me, but not just to show me something because he thinks it's interesting. It’s called shared enjoyment, and it’s a skill that I’m very happy to see him gaining. It's a great step towards the development of better social/relational skills.

(Reading books with Daddy. He LOVES to read books, which is great because 6 months ago he wouldn't let us read books to him at all. Now we can't make him stop!)

Jude has also learned a lot academically. He can name and label all of his letters and numbers, and just a couple weeks ago he started learning the letter sounds. He has now just about mastered that skill, meaning he can tell you what sound every letter makes. The crazy thing is that he learned them so quickly! Once they started working on letter sounds, he had pretty much learned them all within a week. Now he walks around pointing out things and telling me what letter they start with, like this: “Mommy, it’s a butterfly! B says buh. Buh buh butterfly!”  He’s very bright and very teachable. But what confuses us is that he doesn’t seem to be learning many things naturally the way most children do. Most kids will eventually pick up on how to use things like prepositions by themselves. Jude doesn’t seem to do that. He didn’t learn to make eye contact until he was taught. He didn’t learn to use words to communicate what he needed until he was taught. We’re thankful that he CAN be taught and that he learns so well, but we’re unsure why he’s not picking up more skills naturally. Fortunately, it seems like he’s beginning to do so. His speech therapist has pointed out some parts of speech that he’s using that she hasn’t taught him, which means he’s picking them up just by observing and listening to those around him. So maybe incidental learning is another skill that is beginning to emerge.

(Just being cute...)

Other important skills he's learning are imitation skills and play skills. A few months ago, Jude hardly ever imitated people, either verbally or through motions (another ASD red flag). Now he repeats almost everything he hears us say, which is a great way for him to learn new vocabulary and language skills. He also copies just about everything his sister does (which is not always a good thing!). It’s a great way to increase his social skills. Clara and Jude have so much fun playing together – she runs around and acts crazy, and he imitates her perfectly, then they both crack up laughing. It’s quite entertaining, actually.

He’s also picking up better play skills, meaning he can play appropriately with toys. Instead of staring at and inspecting his toys to see how they work, he actually plays with them. Yesterday he asked to play with trains, which he has never done before. So of course I dropped what I was doing (making dinner), and we made a train track. We got out some trains, and he made the trains go round and round the track, talking about them and making sound effects. And he’s beginning to use some imagination, which was a virtually non-existent skill a few months ago.

(Playing with his "friends" on the Little People play set. It's so fun to see his imagination beginning to emerge.)

He does, however, still have his challenges. Social skills are still the most challenging for him. He’s doing much better in this area, but he still struggles. When he finds himself in unfamiliar surroundings or around new people, he reverts to some of his less than ideal coping skills, like marching in circles, jumping, or occasionally lying on the floor and rocking. These behaviors are rare now, so that’s progress, but they do occasionally still happen. We’re working with his school to come up with some field trips in the community where we can bring a therapist along to help him learn to cope with overwhelming situations. One step at a time.

We also have some concerns about how much he's processing vs. what he's just repeating. He struggles to answer open-ended questions, although he's learning (once again, he needed to be taught this skill). If he doesn't know how to answer a question, he just repeats words that he's heard before. It's called echolalia, another behavior characteristic of ASD.  Again, he's making progress, but this is still very concerning.

(Working on some sensory skills...putting bath foam all over himself and playing in the sandbox. Both are great ways to desensitize him from his sensory aversions. We worked a LONG time on this before he would touch that bath foam, let alone put it on his face. And he only just recently started sitting in the sand box. Progress, slowly but surely...)

So overall, he is doing amazingly well. Of course this is what we hoped for, but we never expected him to progress so quickly. He's a completely different kid than he was 6 months ago, but he continues to have some red flags and areas of vulnerability, some inappropriate and atypical behaviors. I struggle with trying to balance my hopes for him with realistic expectations. Part of me hopes that he doesn’t end up on the autism spectrum at all, that he has no long term behaviors that will make him stand out from “normal” kids in the classroom. I still hope that he becomes comfortable in new social settings, that he develops strong relationships, that he doesn’t act ***weird*** (whatever that means) around other kids. I don’t want him to be singled out or made fun of by other children (or adults!). But the other part of me wonders how realistic it is to hope for these things. Am I asking God for too much? Will I be disappointed if He doesn’t answer exactly the way I want Him to? And more importantly, is that what's best for all of us?  I love the C.S. Lewis quote that says “We are not necessarily doubting that God will do the best for us (or our children…); we are wondering how painful the best will turn out to be.” Yes, that is exactly what I’m wondering. I know that God has a perfect plan for this child, but what if that plan involves a lot of struggles and challenges for my sweet boy? What if he doesn't get to have the life I want him to have? Can I surrender my hopes for Jude and trust that God's plan is better, even if it means facing hard times ahead? That’s the struggle I face every morning when I get out of bed. Some days I do okay. Other days not so much. But thankfully, there is enough grace to cover my not-so-great days. And the next morning I can start all over again, and there will be a fresh supply of grace when I fail.

I was reading “Jesus Calling” the other morning, and this thought stood out to me: “Anything that tends to make you anxious is a growth opportunity.” Jude is by far my biggest source of anxiety right now. The hardest thing to deal with is the uncertainty, the not knowing. Does he have autism or doesn’t he? Will he grow up to be “normal” (or typical), or will he be awkward around other people? Will he have friends, will he get married and have children, will he be able to have a good job? WHY do I let myself worry about these things when worrying won’t change the outcome one bit? Why do I worry about it when I know that I will love him just the same, no matter what his eventual diagnosis may be? Because I’m a mom, I’m a control freak, and I’m a rotten sinner. That’s why.

I'm being reminded that, yes, this is a growth opportunity - not for me to become stronger or for my faith to grow bigger or for me to learn better coping skills. I don't need better coping skills. I don't need more faith. I don't need to become a stronger person. I need more of Jesus. Times like this - when I feel most weak and vulnerable and anxious - they are opportunities for growth, but not for MY growth. This is a chance for Jesus to grow bigger in me. If there was ever a cure for my anxiety, it would be this: for me to fall down in front of Jesus and say, "I can't do this by myself. I'm tired and I'm afraid and I just need more of You." That's the only kind of growth I need.




So for now, I'm going to enjoy this beautiful child. I don't know what his diagnosis will be, if he ever gets a diagnosis, but it doesn't really matter, does it? He's just a fun kid. And even better, he's my kid. And no diagnosis or less-than-typical behavior could make me love him any less. Sweet Jude...

Re-Evaluation

So Tuesday was a big day for our little J. We took him back to the hospital to be re-evaluated by the developmental psychologist who saw him back in February. We didn't know this for the initial evaluation in February, but apparently the doctor we saw is one of the country's leading autism experts. He is THE man to see, and we are thankful that not only were we able to schedule an evaluation with him very quickly in February, but we were also able to see him again, and we'll be seeing him again in July. He really is great. So anyway, there was a part of me that was hoping that he would spend a few minutes with J, see the progress he has made, and immediately say "Oh, he's fine! Go on home. You have nothing to worry about." However, I knew that wasn't a realistic scenario (but I still wanted it!). So we knew that our two most realistic scenarios would be that the doctor would either definitively diagnose J with ASD, or that he would continue to be uncertain about the diagnosis. Fortunately, the latter scenario is the one that occurred, and it really was the best news we could have realistically hoped for at this time.

After talking with us and observing/evaluating J, the doctor agreed that he has made amazing progress. His language has really taken off. The speech therapist at his school told us that the goals they are beginning to set for him are almost age-appropriate, which means that his language skills are nearly caught up to where they should be for a child his age. That's very encouraging. And since he's started at his new school, his social interaction skills are improving like crazy. He is so much more socially interactive and so much less overwhelmed and intimidated by new people/new surroundings. He's friendly, outgoing, affectionate (even with new people), makes great eye contact, plays back-and-forth interaction games, and is even beginning to engage in some pretend/imaginative play (feeding a baby, giving a toy dog a drink, pretending to have Elmo talk to a baby, etc). The lead therapist at his school told me the other day that she has never seen a child make so much progress in such a short amount of time. So of course we're very encouraged by all of this. However, there are still some red flags. He still has some areas of vulnerability where he's just not interacting in a developmentally typical and appropriate way. Here are some examples: When he wants someone to do something, like blow bubbles, instead of handing the bubbles to the adult and saying "More bubbles," he will throw them in the adult's lap. He may follow up by saying "More bubbles!" But he doesn't look the person in the eye, hand it to him, and make the request. It may seem like a small thing, but it's an important social skill. He's improving in this area because he's being trained on how to request things appropriately, but typically developing children pick up on this type of skill simply by observing the appropriate behavior being modeled. J doesn't.  It's also very difficult to divert his attention. He rarely follows someone's gaze or point when they try to direct his attention to something specific, and sometimes does not respond even with repeated use of his name. These are just a few examples, but there are several of these social/communication skills that are still challenging for him. 

Overall, the doctor feels very optimistic and encouraged by his progress. He does not feel confident making a diagnosis of ASD at this time, but he is still concerned about J's red flags and areas of vulnerability. He recommended that we continue with our current course of action, continue the interventions we have in place, then come back in 3 months to see if things may be a little more clear at that time.

So now we begin to process what this means and how we feel about it. I know it was the best news we could have hoped for, so I'm glad for that. But at the same time, I just wish someone could tell me for sure that my little boy is going to be just fine. I still hope that he doesn't end up on the autism spectrum, I hope that he develops strong and appropriate social skills, I hope that he will develop healthy, intimate relationships, I hope that he will be able to clearly communicate his thoughts and feelings, I hope that he will one day understand who Jesus is, and I hope that he will understand how very, very loved he is. I want him to be smart, I want him to do well in school, I want him to be able to do anything he wants to do in life. I want all of this so much for him, yet I have no guarantee that any of it will happen. We're doing everything we can do to help him reach those goals, but ultimately we have to surrender our child to the One who created him. We know that God formed this sweet, beautiful little boy for a specific purpose. I may have goals and dreams for him, but they may or may not be the same goals for which he was created. So we will pray and we will love him, and we will continue to get him the best interventionists and therapists that we can find. And somehow we will continue to hope in the midst of the uncertainty. This is why we can continue to hope, even when we can't see what's ahead and it feels like we're walking with blinders on....

"Even the darkness is not dark to you. The night is bright as day..."  ----Psalm 139:12