autism awareness

If you come to Spencer's this month, you can see the above sign featuring our drink of the month. It is delightful, I must admit! I love it iced best, but it is good hot too.

On April 2nd, we wore blue for World Autism Awareness Day. Owen was supporting his brother as much as he could! Since we live with Autism every day, it is hard to remember what it was like to NOT be aware of it. But I wanted to dedicate a post to the reality of our lives because it is so hard to reflect on it when there's no time left for reflection.

Many of you are aware that we have a busy schedule. Lewis has tons of appointments every week. He attends school from 8-11 a.m. Monday through Thursday. He has 1-3 other therapy appointments/interventions every day after school. Because our focus is a home therapy program (ABA) much of my time is spent preparing for his therapy. I gather materials for Lewis to label or sort, making many of these resources myself or finding them online. I keep up with a data notebook, time sheets for our therapists (so they can get paid through a waiver program) and otherwise research methods to make Lewis' life better.

On rare occasions, I attend support group meetings with other moms/parents of children with ASD or other disabilities. It is amazing to me that we don't sit there sobbing or even whining. These women who deal with this baffling disorder hit it hard and give it their all and still can laugh and help someone else by sharing something that worked for them.

But I have to be honest and say that my heart still breaks when we are around "typical" kids Lewis' age and we see what they are doing, and especially their level of understanding and social awareness. That is emerging as Lewis' major deficit: he is unaware of others, their feelings, their existence sometimes and must be coached to have a 'conversation.' School is a nice break for me and is good for Lewis in many ways, but it is basically a black hole in that we have no idea what happens there from day to day because Lewis can't answer questions about past events.

His strengths are definitely memory and music. He can plunk out any song at will on the piano. He memorizes videos, books, songs and re-lives these kinds of things over and over. He is definitely brilliant. We just have to keep chipping away at his brain to figure out what all is going on in there.

All of this to say.......my main comfort is in knowing that Autism is not eternal. It will burn and fade when Christ returns and Lewis (and countless others) will not be plagued with it any longer. It (like all disease) is a result of the fall, of sin, and while I can't understand why God picked us to go through this, we trust there is a purpose in it. My confession is that most days I worry constantly and feel like I'm fighting against the world for my child. It so often feels like no one gets it and I am all alone. But deep down I know that is not the case. We have so much to be grateful for in the support we have for Lewis. It is not perfect, and every positive has its dark side (and vice versa). There is a lot of work, and many days I long to wake up and do something for ME. To just have a day off. I have forgotten what that's like!

This is not meant to be a woe-is-me post! It is meant to be an honest post.......and unfortunately most days when I see people I am so happy to just be talking to someone about something else that it is easy to say things are okay when there is a much longer answer to how we are really doing. So there it is......autism is not easy! We take great joy in the progress. And there has been tons of progress. There is just constant uncovering of more of the puzzle each day and it can be exhausting. We love Lewis! He is worth it. Hopefully one day he'll be able to help us figure all of it out.

what we've been up to

Life is always crazy around the Shepherd household. It has been nice and warm so we have spent a lot of time outside. Owen is becoming quite a little boy and running around. He loves to "walk" and look for letters all over town.



Lewis has been perfecting his tricycle riding. He is doing great! He can even turn around 180 degrees if he wants. Sometimes Owen has to give him a push if he slows down and isn't keeping up. He has had one accident where he scraped his elbow, but he mostly laughed about it. He really loves his tricycle!

Owen, on the other hand, has gotten into "sand." We have some moonsand that the kids got for Christmas. It's an amusement park. They have both loved playing with it now that they can make a mess outside. It is a mess, but on the back porch it is a blast for them. He likes running it through his fingers saying "sand" over and over.

Both boys have loved having their Aunt Beth around. She spends a lot of time with Lewis every week, but Owen also loves it whenever he sees her. His new favorite activity is having her draw things on our Magnadoodle and then saying what it is. Here is one of the first times they did this. You can tell how excited he is.



Poor Beth basically got herself into it, but Owen pushes her all over the house and drags the magnadoodle to her to get her to play this game. We are happy they have a fun activity to do together!

Easter Sunday

This year we spent Easter in Louisville with my side of the family. My step-sister, Leah and her husband, Mike and their kids (Will, 10, and Mallory, 6) joined us too. The kids had quite the little Easter egg hunt in the yard. Owen is very much into colors right now, so he had a blast yelling out the colors as he found the eggs. He found a lot of them!


Aunt Beth helped Lewis spot the eggs. One funny thing was that some of the "eggs" were actually shaped like animals and Lewis did not want those! He only wanted to collect actual eggs.

Aunt Ellen had to go get some extra baskets to hold all those eggs!


After the egg hunt, the guys played ball and Owen had a blast watching and throwing the football around. Uncle Mike seemed to enjoy it too.

easter eve

We headed to Nashville for Easter Eve with Justin's family. While Owen napped, Lewis got to help dye Easter eggs for the first time. He seemed like he really liked it! Aunt Monica lead our endeavors. The eggs turned out really nice!


Lewis really liked dipping the wire egg holder into all the cups.


Olivia designed a couple of cool ones.



It was a nice, relaxing time with our cousins, aunts, grandparents and the boys loved seeing everyone!

tricycle and the park

It's no secret that Lewis is not the most coordinated child. However, since it has been nice out, Justin put the tricycle together that the boys got for Christmas (it is multi-functional so we could push Owen on it too if set up slightly different). Beth came over for some bonding time with Lewis and he wanted to try it out so she helped him ride around some. He actually seems like he's getting somewhere with pedaling. Steering is another story. It's like he has no idea his arms can do something while his legs are moving.


All of this to say.....we are sure he'll get it. He can go for a few feet by himself if he doesn't run off the road. And he seems to really like it too, which helps a lot!

This morning I dropped off a grant application for help with Lewis' therapy etc. It has taken several months for me to get it together! It is a relief to have it done and to just wait to see if the committee has favor on us. To celebrate, Owen and I went to the park. He is a crazy man! He loved the slide and the wobbly walkway. You can tell how fast he is going in these pictures.




He also discovered the purple flowers growing in our yard.

egg hunt and the bunny

Lewis' class took a field trip yesterday to Bowling Green High School where some students had set up an Easter egg hunt (and I got to join them!). They had made these cute "baskets" out of milk cartons for the kids to collect their eggs in. Lewis did not have a super-competitive spirit when the teacher said "go!" He was very slow and methodical in putting the eggs in his container, and at the end had about eight eggs to show for it (not too bad!). I joked with his aide that he has yet to grasp the concept of greed.


Anyway, after the eggs were snatched up, many of Lewis' classmates lined up to meet the Easter bunny.Obviously a girl, the bunny was very friendly and tried to get the kids to give hugs etc. Lewis was totally freaked out by this bunny. It was an incredible mixture of fear and awe. He was terrified, but couldn't walk away. The bunny gave him an egg which he liked. Then she asked for a high five. That went well. Finally, I asked Lewis if we could take a picture, all three of us together. From then on he seemed okay with the bunny and followed her around for a good part of the time.

What a cute smile!

Lewis warming up to the bunny

Class photo

aunt beth

Since Lewis was diagnosed about a year and a half ago, my sister Beth has been hoping to get to move from the Chicago area to Bowling Green to help with his therapy. This weekend our dream is becoming a reality! It has been a long process. She put her condo on the market in September and was under contract in January. She came in February to look at apartments. She is choosing to live on the square, across the way from our own Spencer's Coffeehouse where Justin is spending most of his time these days.Here are some views of the empty apartment.

The boys certainly like the view from the windows.

It is a nice, wide-open space. After a whirlwind trip up to Evanston last week, we delivered her belongings with the help of friends so she could stay and close on her condo on Wednesday. She is coming tomorrow officially to take up residence downtown. Currently, her apartment looks like this:
The landlord put down new flooring in the bathroom, and Lewis was very interested in the shower. This is a lot of pictures. I might have to do a separate post about the trip itself. It was interesting! The hard part for us is done. Now Aunt Beth gets to re-learn life in Kentucky. She hasn't lived here in a LONG time. And she gets to unpack all of that stuff!

ABCs and library trip

Last week, I got to take Lewis to the library to get some books and videos. While I was checking out the kids' section, Lewis found a book about Mohammad Ali. The book had a picture of him on the cover in his standard boxing uniform: shorts and gloves, no shirt. Lewis started whimpering and said, "Put shirt on!" This happened over and over, followed by, "Put pants on!" It was rather humorous, but I felt bad for him not understanding why there might be someone who willingly had no shirt on, and why it might be okay. It's great that he noticed something different, all on his own.

He's also been going to the potty standing up. He needs help with that still. He tried on his own while I was getting Owen down for his nap and it was quite a mess. We were proud of his effort!

Owen, on the other hand, is spouting off his ABC's, numbers and colors like crazy. He's a little sponge, soaking up all kinds of information. Here's a video of a recent performance.

the warm up

It's been getting warmer, and we've been outside playing a lot. The boys have been spending some time on the stump and it's an easy place to take pictures where they won't try to run away.

lewis video archive

Lewis' autism brings with it some serious OCD tendencies. He gets obsessed with a book or a song and then after a week moves onto something else. His most recent obsession is with the Wii. I've been forced to use the Wii Fit because the weather has been so awful lately. I've resigned myself to indoor exercise. Anyway, Lewis loves it and pretends to do it all the time. Only, he isn't doing the exercises he is spinning the "hula hoops" (usually coins), or jumping around like the punching bag in the boxing segment. He sings the songs and makes the noises, just like the Wii. Today he has cried twice when we told him he couldn't "watch" the Wii. We made him pick a video instead. I know, we're awful parents, right?

We've got videos of some of his other obsessions of the past few weeks. He's still loving Sandra Boynton. He got into Oh My, Oh My, Oh Dinosaur! for a while. This one is long. He has it memorized. He's doing great with his 's' sounds in this one. Since this book entered our lives he has only wanted to wear his dinosaur p.j.'s.



He moved on to Blue Hat, Green Hat for a while too.



He's also loving the piano. He plays several songs like, "Twinkle, Twinkle Little Star", "Row, Row, Row Your Boat" and "Mary Had a Little Lamb." He also plays something that sounds like the sad music on Lost. Here's his own version of "Row, Row."



Other stuff he's learning is how to put on socks. He struggles with dressing skills in general. Socks are going better. This was one of the first days.



It has been a lot of work lately to keep up with his program. He's matching typed words to pictures like hat, boat, duck, dog, pig, hat etc. Many of them he gets right the first try. He's doing simple mazes, writing letters, cutting lines, and labeling actions in pictures. It's very time consuming for me to organize, laminate etc. Socially he seems to be making little progress. Hopefully he will start to become more interested in the other children he is around so much. We still absolutely adore him and we are so proud of the many strengths he has.

owen update

It's hard to believe Owen is already 20 months old! In just 4 months he'll turn 2! It's crazy. He has been a busy bee lately. He zips around the house with reckless abandon, which leads to some ugly bumps and bruises sometimes (and blurry pictures). He's trying to climb on whatever he can. So far his biggest success has been our new IKEA chair. He will manage to hoist himself and a favorite toy up there and then sit for a bit to play.


He continues to be obsessed with letters, but now has added numbers to the list. He is walking around counting up to ten, with some numbers sounding much clearer than others. He also loves going up and down our step stool. As long as he has something to hold onto he does pretty well, and almost leaps off.



He has also started saying "no" and "yeah." "No" is said so often that it is driving Justin insane. He likes to go to things he imagines are not for him and touch them saying, "No!" I have to remind Justin that Lewis only started saying 'no' a few months ago, so we have to be glad that Owen seems to have this one down.