road trip--day 2

Lewis got up kind of early the first full day in Evanston. Beth had some really cool toys to play with, including a ball that glows in the dark and changes color every few seconds. He loved looking at it with a glitter ball right next to it.


Another funny thing was Lewis' new name for Aunt Beth. He kept doing the sign for 'aunt' (the letter A next to his chin') for Aunt Ellen. But by Saturday he was pairing that sign with the sign for "bath" when speaking of Aunt Beth! It really cracked us up because the words do sound similar, and he was very consistent in referring to her differently. He stills does this when I ask him about her......so cute.

Beth is a gifted tour guide for the Chicago area. We have visited many times and always do different things. This time we went to the Kohl Children's Museum in the suburbs. It was a lot of fun. Lewis didn't like all of it, but the parts he liked, he REALLY liked. The first part we saw was all about water. He would've stayed there all day, but we forced him to check out a musical section,


some fake construction equipment,



and a train exhibit where Owen got to have his first experience milking a fake cow. Notice how much is in the bucket!



Lewis loved the train exhibit, which was sponsored by Brio. This was a temporary exhibit, but he had a blast pushing buttons and making train sounds like a real conductor.


They had a more scientific area. This thing below had a button that controlled air coming out of this cone. It had a whole bunch of foam shapes that kids could try placing above the air to see which ones would float. We discovered that only the egg shape would work,


and the sphere. Lewis had a blast with this thing!



Another area was a mini theater where kids could dress up and put on a show in front of a camera. Under the camera was a TV so they could actually watch themselves perform. This is a really cool idea if you ask me, and Lewis really enjoyed singing songs (doing the motions) and watching himself jump. Notice Beth in the top right of the photo frame getting crazy in front of the camera. We all liked this one!



The museum featured a pretend store with little grocery carts to push around and a mini daycare...lots of other cool things. The last part was an area with cars. Lewis and Beth spent quite a bit of time sending cars down a ramp.


The rest of the day involved Thai food, a trip to Trader Joe's, a nap for most of us, and some more time at the play ground.

road trip

The boys and I traveled to Chicago at the end of April to visit their Aunt Beth. Thankfully, Aunt Ellen came with us. We stopped in Louisville to pick her up and had some time with Grandma & Grandpa Reitmeyer.



We spent the night at Ellen's and got up early so that we could stop in Lafayette, IN to visit our friends, the Powells. Corrie was playing outside when we arrived. Lewis jumped right in and started splashing in her water table. The kids are bigger, and there is a new Powell we had not met before (baby Mary), but otherwise it was almost like no time had passed. Lewis especially seemed to be very happy there. Corrie was quite the hostess and quickly offered to give us a tour. Lewis was thrilled to see some of the toys he used to love playing with. :)


Honestly, I was really encouraged to see Lewis interacting with Corrie. She was always more persistent in making effort to play with him, but he was so much more responsive on this visit than he's ever been. They spent time jumping in the guest room, playing outside etc., and despite Lewis' quiet demeanor, they had a great time.

Corrie also had fun playing with Owen.



We were glad to see Brian during his break for lunch, and grateful for Carrie's good cooking. After lunch, Corrie, Ellen and Lewis took a rest on the comfy couch.

This was the only picture I got of Mary....sleeping in the swing. Oops! I wasn't feeling the best that day and tried to keep my germ spreading to a minimum, which resulted in this lone photo of her. She's a sweet baby!


It was great to see the Powells in their new home! It's so cute and the area suits them so well. Of course, it made me sad that they are not closer, but it is great to be able to visit like little time has passed.


About 4 hours later, we pulled in to Evanston. The boys were soooo happy to get out of the van. Beth has a playground next to her building and they were thrilled to get out and play.


Lewis did great climbing on the equipment.




A video of Lewis that first day.

aware it's may

April was autism awareness month, and I meant to dedicate a post to this fun topic, but got behind somehow. If you have been reading our blog then you are already somewhat aware of what autism is, but may not realize how it effects us personally. Throughout the last year as we went through the process of getting Lewis diagnosed and then coping with the aftermath, it has been difficult to put into words what it has been like for us really. I am not a super "feelings" oriented person, and in general try to put a happy face on life because we are focusing so much attention on helping Lewis succeed and smiling seems to help make that happen (at least, he likes it!). Still, in the name of "awareness" I'm going to attempt to be open, at least briefly.

Preparing for Lewis' evaluation in Louisville last fall, I was reading a lot of books about autism. They were so helpful, and most were very hopeful about kids making great gains and progress. I was sure that once we got our diagnosis that we would be on our way to "healing" Lewis. And while he has made amazing progress through therapy, sensory integration and the like, we are constantly reminded that he is not like other kids. He is special, and intelligent, and he brings incredible joy to our hearts. Seeing him happy is my favorite hobby. But on the flip side, when his speech regresses, or when I'm talking to him and he can't calm down to understand that what he wants is right around the corner, or when we're trying to get him to see that there is huge, beautiful rainbow RIGHT THERE in the sky, or to notice we are pointing at a big lion on the other side of the fence at the zoo....it brings great sadness.

When we are around other children who are able to speak and pretend and make up their own stories, we are sad that our little boy is missing out on those things. I remember so much joy in my childhood from birthdays and Christmas and the make believe world I spent so much time in that it hurts to know Lewis can't experience those things right now. So with every great day or event, there is an element of pain that is paired alongside it. It is the dull ache of unfulfilled hopes and dreams...........not for anything spectacular or extraordinary...but instead for the simple, the very ordinary that so many people unfortunately take for granted.

Each day is filled with stress that we are not doing enough, questions of our adequacy for the job, frustration with the bureaucracy that seems to make things harder, and pure exhaustion from trying to balance it all. And it is a lonely place. There are a few people who kind of understand what this is like, but even less who can really relate to where we are right now. Lewis is different, and as a result, we have become different too, and we don't fit in as easily as we once did.

Today we had Lewis' first IEP meeting at his preschool for the fall. Everyone was really nice. We got to meet the speech therapist, the OT, and lots of other school people and they seem to be a good team of people. They even agreed to do some ABA with Lewis each day. I felt good about how things went, but it has been a huge source of anxiety for me leading up to today and I have wished that we could spend next year playing instead of thinking about school. When they asked about letting Lewis ride the bus, I had to put my foot down! Putting my baby on a bus is where I draw the line. That is probably the part he would like the best, but he'll have to wait.

This has been a season of a bitter reality, that life is going to be hard for a while. There is not a quick and easy solution to this situation. We are grateful to the Lord for providing for us, and for guiding us in helping Lewis. At the same time I have struggled with the feeling of abandonment, knowing that God could easily heal Lewis by removing the scales from his eyes that are keeping him from seeing so much in life, but He has withheld that blessing for now. My faith knows there's no where else to go, but the fellowship is not as sweet of late, while my need is so much greater.

Our greatest encouragement has come through the church, and we are grateful for our piece of it here in Bowling Green. We need to be around others who are struggling, even though the struggles are different, there are commonalities there that when shared seem to make the load lighter somehow. It is such a nice break to think about other people's problems and lives in general! Thanks for sharing your stories with us, and enduring this somber read. Please understand that we want to be able to spend more time with many of you, but have few opportunities to really socialize in this weird season of our lives. Please hang in there with us.

Easter and after

For Easter, we went to visit Justin's cousins who hosted many of the Shepherds at their home. It was a fun time. Owen slept through a lot of the festivities, but did get to pose with Grandma,


and Grandpa,


and Grandpa and Lewis,


and all the Shepherd men.


Lewis got to hunt for Easter eggs, but since he stopped and opened each one, we left them empty which he seemed to like just as well. Olivia helped, but he did really well finding all the brightly colored eggs. He got some jelly beans too, and a fun squishy ball from his aunt Jeanne.


The next week we got to get out to the park for some fun. Owen has become quite photogenic.


We also took him to a Bowling Green Hot Rods game. It turned out to be a cold and rainy night which led to both of us getting ear infections. It was a really nice ballpark though, I have to admit. Being a baseball person, I was pretty distracted by the constant advertisements going on everywhere and couldn't focus on the game much. But again, we don't know anything about this team yet so it's hard to get too emotionally involved. It does seem to be a fun event for groups and families to go to this summer. Maybe Bowling Green does need something like this! Time will tell.



We're off to visit my sister (aka Aunt Beth) this weekend. We'll surely have lots of stuff to post from that trip.

louisville zoo

We took Lewis and Owen to the zoo with my family on Good Friday. Lewis enjoyed seeing the animals, but struggled to see many of them in their natural habitats.

They did have a neat exhibit where they let us feed a giraffe. Lewis seemed a little afraid, but I had fun.


There was also a very intense gorilla.


Lewis waved and tried to get his attention.


Owen was along for the ride.


Lewis also enjoyed waving at himself in the reflective glass which caused him to miss out on some cool animals, like the alligator.


By far his favorite animals were the penguins. They were very active and swimming around. He got very excited watching them. It was the most excited he was all day.


The train was his next favorite part. He cried when we had to get off. He had never been on a train before and kept signing train and smiling really big while we rode around.


Here's a short clip of Lewis watching the penguins. I missed his best moments, but this is what we got:



All in all, a good day!

owen's growin'

Owen is getting bigger, and his little personality is starting to take shape. He's developed some stranger anxiety recently, and certainly distinguishes between familiar people which is great, but it does cause some trauma here and there. We finally got a picture of his teeth. The top ones may be coming in soon too.


One thing is certain: Owen loves eating. Every time we give Lewis a tasty gluten free snack, Owen gets that "I'd love to eat that" look. After turning up his nose at some baby food peas the other night, Owen ate quite a lot of au gratin potatoes. He couldn't wait to get more of that normal food. Then we took him to the Taj Palace for some Indian cuisine. He ate a ton of naan (bread) and enjoyed the flavors of chicken tikka masala, and some other dishes. He mostly just got to eat the sauce, but he was very interested in trying new foods which is a great start.


Owen has also started waving. Here's a video of him waving and having some lunch.

words, on fire

We have blown through the last week or so of our lives. Lewis is making some progress on his verbal attempts. Here is a video of him with one of our volunteer therapists, Aimee Games. Aimee has a background in speech therapy and has done a great job motivating Lewis to speak. Having five kids of her own doesn't hurt either! Watch her in action here:



Lewis has been fairly consistent saying "duck" in his weird way, and also in saying "go." We know he has a long journey ahead in unlocking his voice, but we are glad he's trying.

Owen has been doing well also, and has welcomed his second tooth onto the scene.

Justin has been a workaholic putting in his full time hours at the paper, and 30 hours a week at Spencer's. We are all sort of exhausted, which is why I shouldn't have been surprised when I got a stomach bug yesterday after a lunch out with friends. Maybe it was food poisoning? I don't know. But regardless, I am happy that these things don't last long. I've had a pitiful diet of frozen waffles and plain rice along with Gatorade to try and keep me from getting dehydrated.

I was too tired today to take notice of a house fire just behind us. From Justin's pictures it was pretty bad, but everyone survived including their yippy little dog. It sounded like every ambulance and firetruck in town were in our backyard, but we are happy everyone is okay.

ABC's of our week

Lewis has enjoyed these foam letters at bathtime since last fall, but it had been a while since we'd gotten them out. Tonight I threw A-G into the water, and he immediately put them up in order on the side of the tub. He's known his letters for a while, but this is the first time he's arranged them like this.

I was trying to get a picture of Owen's tooth, but it's kind of blurry. The white part of the blur is his tooth!


Last week I took Lewis and Owen to a new playground in the area that has some cool new equipment. We are loving the warmer weather and getting out more consistently to play.


Owen enjoyed the playground in a different way.

ABA Update: Lewis has been working on jumping and has just about got it! He clears just a tiny bit of space between his feet and the ground. He's also working on mouth exercises, pointing (has a way to go with both of these), but is making headway in imitating sticking out his tongue and is starting to 'get' blowing by using a plastic recorder. The other positive is some emerging pretend play. We've caught him putting a monkey to bed in our room several times, among other things.

9 month stats

Owen headed to the doctor yesterday for his well baby visit. It's hard to believe he's already 9 months old. Here's the current standings:

Ht.: 29"
Wt.: 20 lbs., 9.5 oz.
Head: 46.5 cm

They checked his iron and he was in the normal range. He got one Hib vaccine, but took the teaser bracelet the nurse gave him and was over it in a second. Next stop: one year!

walking in daddy's shoes

The weeks have been flying by! The longer days are making life a bit more fun and enjoyable. This time last week it was snowing, and we are so grateful to be embarking into the spring. But it seems like some random funny things have been going on at our house.


The boys got dressed in green for St. Patrick's Day, which is not so unusual.


But then, Lewis has been trying to wear our shoes. I found him like this, and thought it was funny since the shoes really go well with his outfit, if only his feet were bigger.



Lewis has been encouraged by our OT to do heavy pushing to give his arms a workout. Our friend and volunteer therapist, Mandy Guss, found this 80's shopping cart in her mom's attic and Lewis has enjoyed pushing it around with a haul of beans and Vienna sausages. Notice how he's pushing with one hand, and carrying his beverage in the other, also just like his dad. Thanks Mandy!


Now for the videos. Justin and Lewis play all kinds of funny games together. Honestly, I don't get many of them, or why they're so funny, but Lewis LOVES it when daddy comes home and is ready to play. This video involves a game with a monkey.



This one is Owen showing his own unique sense of humor, and love for the camera.



This last one is Lewis taking a short video. Live a moment from Lewis' perspective..sort of!

good day

Many of you may be wondering about all this therapy we're doing. My dad and Martha were visiting this week and I realized from their questions that it is hard to describe on a blog just how it works. Right now Lewis is getting 12-15 hours per week of ABA therapy, an hour with an OT, and 2 hours at WKU's speech clinic. Tonight, due to snow and an overworked volunteer, I got to work with Lewis some myself and took a couple videos to show more what a session looks like.

We have about 16-18 tasks per session, and each task is done 5 times. If Lewis completes the task on his own, he gets a +, and if not he gets a -. If Lewis has trouble completing the tasks, the therapists manipulate his hands so that he knows what is expected, but he does not get credit for it. Of course, on vocal imitation that is impossible, but as Lewis learns to imitate nonverbal things, the verbal imitation should also improve. Anyway, the data shows when Lewis has mastered a skill (80% or more correct over 3 sessions) and then it moves into 'maintenance.'

The tasks range in time length from seconds to minutes (puzzles and fine motor skills take longer), and he is rewarded with reinforcers (toys he likes) in between tasks. The reinforcers are key, because if he doesn't have something motivating to work for, he will typically run off or just not cooperate. The real goal is for Lewis to use the skills learned in therapy in real life.

Tonight we were working on a 12 piece puzzle (which Lewis hates!). He whines and sometimes screams when he sees a puzzle. This puzzle he has been working on for a week, and it takes him a little while, but he can do it all by himself! If you had seen him last week, or even Tuesday when the puzzle caused several breakdowns, you'd be amazed that he has caught on so quickly.



The next video shows him touching a baby's hand, opening a ziploc bag on his own (which also gave him some trouble early on), and nodding by imitation (you hear me say "do this" and he responds with an awkward nod).



While all of that was going on, Owen was jumping in the doorway. He's gotten into, running and jumping and flying around.



My other victory tonight was getting Owen to roll from his back to his belly all by himself! He has not figured it out on his own, so our DI, Krista, started working with Owen this week too and putting a towel behind him so that he could practice rolling from his side. We worked on it some this afternoon, and then tonight I left him on his back (not propped at all) with some paper strategically placed to entice him to roll. For some reason, Owen loves paper! I walked into the other room and peeked back a minute later and there he was on his belly! He took the bait.

These boys are a lot of work sometimes, but it is so fulfilling when we see some progress. We should all sleep good tonight!

go tops!

We rooted the WKU hilltoppers to victory last night in the Sunbelt Conference Tournament. The boys got to wear their new Western attire for the event. They look great in red!


We've been having a lot of therapy still. Lewis has learned to string beads by himself and is working on a 12 piece jigsaw puzzle. He really despises working puzzles, but seems to have a knack for them. He's also imitating nodding 'yes' and shaking his head 'no' which is a welcome skill!

He's become quite fond of the laundry basket and is even willing to push his brother around the house for a few laps. Owen is up to over 20 lbs., so it's quite a workout for a little guy! But oddly, he has enjoyed sitting in the basket for his evening video. It keeps his dinner crumbs from getting in the carpet which is an added bonus.


Owen is working on his first tooth. It is just past the gums and should be emerging anytime for a better view.

pics and video

Here are some sweet pictures of Owen in a diaper. I have a friend who always says there's nothing sweeter than a baby in a diaper......so in her honor, I captured Owen at 8 months.





And here's Lewis at Walmart the other night. Justin found this cowboy hat and it was cracking us up! We were strong and managed to leave it at the store.


Lewis has been learning to imitate. After months of watching his signing videos, he's finally trying to do what the people on the screen are doing. It makes for some great entertainment! His current favorite has a song about all the things people can do ("I'm really good at walking...running, etc.)." Lewis does babyrobics to this song, and in this particular video, after he gets into it, he seems to be dancing much like our friend, Derek Holt. Give it a minute for him to get going and you'll see what I mean! Happy viewing.