The Little/Big Sister

We know that our little Sadie is a gift from God. Of course, we believe that all children are gifts but Sadie's our special gift. God knew Caleb and God knew that he needed Sadie.

Sadie has done more for Caleb than all of his therapies. I often wonder what our boy would look like if he had been an only child in our house of quiet introverts. Would he have retreated more and more into his books? Would he still struggle with games of pretend?

Our Sadie, from the start, refused to play by Caleb's rules and drew him out of his world and into her's with her imaginary Mexican family, talking dogs, ballerina cowgirls and, of course, the princesses.

Now as they're growing, I'm seeing Sadie beginning to take on a new role.

We spent the weekend at camp. Just me, the kids and Pappy (Andy was home working and participating in movie magic, being an extra for Batman). Weekends at camp are challenging- the nearest grocery store is a little one in a town about 30 min away over the mountain, there's no cell service, and then there's the constant reminder of my stepmother- but we do these weekends with my dad and hopefully make some new memories at their camp in the woods.

As the kids are getting older, they get more and more excited about going to camp. I'm thinking it's less about being out in the woods and more about Pappy's tendency to be very generous with cookies and Bugs Bunny cartoons. But the kids were very excited to go up. This trip was for cousin C's birthday and to pick blueberries.

As excited as the kids are to go to camp, these weekends can be a little more challenging for the Boy. It's really hard to keep a schedule and a routine at camp. Caleb needs to be very "go with the flow" and after a few days of that, he's often done. My dad has gotten much better in understanding Caleb but I know the tantrums make him uncomfortable so I'm on supermom duty trying to manage it all.

This weekend, Supermom, had a sidekick and I got to see my little girl understanding and trying so hard to calm her big brother.

Caleb did very good most of the weekend but we did have a couple of bobbles. One in particular was during video game time. This is often in the evenings when the Boy is tired, spent (coping-wise) and it makes for a sometimes volatile combination. In these situations, he has a really difficult time losing gracefully. This evening was no different and I'm not exactly sure how it happened but the boy lost a game, got very upset and when I came into the living room, Sadie was with him, trying very hard to calm him down. I could hear her soothing voice and see her gesturing with her hands, explaining that things were okay and that he needed to just settle down and we would sort it all out.

It was a sweet moment and made this mama very proud of her girl. Her little girl, growing up and recognizing her big brother's challenges. Her little girl caring more about him, than about playing her game with Pappy. And Caleb responded to her, calming down and then coming to me so that we could sort it all out.

It's happened a few more times since then. He hasn't gone into a full-blown tantrum but she's recognized instances where he might have difficulties and calmly tried to talk him through them.

I know she doesn't know Aspergers or even Autism but she loves her big brother and wants to help him. And this mama is happy to have all the help she can get, especially if it helps her boy.

Still in Holland: Part Two

We had a great week with G'ma. We filled the time with lots of fun activities and still made plenty of time for stories and playing pretend. Part of keeping Caleb together, means still having time for him to escape, to curl up with his 2 best friends- Giant Frog and a book. So we had plenty of time for that.

On G'ma's last day, we had some extra time so we decided to go to the Science Center for the morning. It was a nice way to avoid the heat but it was also very crowded. There were several camps there so we skipped the first two floors and headed up to the top floor to try to avoid the crowds a bit.

It's been awhile since I was last at the science center. It's changed quite a bit and I love the changes. One big change is the addition of a gated area on the top floor for ages 3-6 and their families. This was perfect for us. The camps started with kindergarten age kids and many of them couldn't come in because they didn't have chaperones with them. It was the perfect place for us and many of the other families trying to enjoy the science center.

The area has several climbing spots, a big water table, a place for dress ups and a little book corner and my boy's favorite, at the back is a contraption for moving plastic balls around. A conveyor belt takes them up to a bin at the top of the machine and when the bin gets too full, a whistle sounds and the balls drop down on whoever is underneath. I think just about every kid there loved that part. And my boy was right with them.

It was here that it hit me again- my boy is different. My boy has asperger's.

Caleb was eagerly loading the conveyor belt with balls or turning the wheel to take them up to the bin. He was so happy. A group of 6 yr olds convinced their chaperone to bring them into the area too. They quickly came back to this contraption (how could you resist?!). Caleb wasn't bothered by more kids and they didn't seem bothered by him. The whistle sounded, the balls dropped and it all began again with dozens of squeals and giggles. I kept watching Caleb and I noticed some boys working with him. They had their ages on their name badges- K-1. These were Caleb's peers. Caleb will be 6 in a little over a month. And as I watched him and them, he was bouncing and giggling and flapping. It was a bittersweet moment. I was thrilled to see him so happy, having such a great time. How can you not feel that joy when you see it on your child's face? And yet, seeing side by side the difference between my boy and these other children...

It's a reality. Fortunately, it's not a hopeless reality. He's going to keep growing and keep learning how to fit in this crazy world. He'll become more like these other kids, with a little extra help but at the same time, I truly hope that he doesn't lose that freedom to express his happiness. As a supremely self-conscious individual, I love that both my kids are so confident and willing to express themselves without reservation. I envy that freedom. I want Caleb to learn but not lose himself in all these treatments and therapies. Hopefully there will be a balance.

After awhile, he grew tired of the balls and ready to explore more things. I thought he might appreciate a reading break after being with all those kids for so long. I led him over the the book area and my boy casually glanced at the books but before I could take a seat to read with him, he had turned around and was making his way back to the water table?!?!! Of all things! He went to the water table, put on an apron and proceeded to get busy in the water. Who was this kid? G'ma was just as surprised as I was. This is the boy who still insists on changing his outfit if even the smallest drop of liquid lands on him. How many trips to the Children's Museum where we couldn't even consider going up to the water floor? And to turn down books in favor of getting wet?

My boy is growing. My boy is learning. My boy is getting a handle on his quirks and having an easier time playing.

Caleb spent a good 15 minutes playing in the water. He didn't even bat an eye when he got sprayed in the face by one of the other kids. He didn't complain that there were wet spots on his shirt and shorts. And at the end, we didn't spend any time at all with the books.

It was a good day and a great visit! Thank you G'ma for coming out to play :-)

Still in Holland: Part One

Yes, we're still in Holland. Many of you might say, "What?!?!" and if that's you, please click on the link and read. I really enjoyed that piece, the first time that I came across it.

We've been in Holland for some time now and maybe it's that it's becoming more familiar, or maybe it's becoming more like where we prepared to go but this week, I saw several reminders that we're still in Holland or that my son still has Asperger's.

I do quickly admit that I feel very blessed. With such a wide range of symptoms and abilities, I'm thankful that my boy is where he is. I'm thankful that he has a great team helping him, that we have great family and friends who understand and support us. I'm thankful for the huge progress that he's made in just this short year of treatment. I'm thankful that he's eager to go to school and that (so far) we have a school district willing to accommodate him and work with us to encourage his success. I'm thankful that I don't have some of the worries that other parents have.

I spend a lot of time reading their stories, other experiences with ASD and I am again and again amazed at the strength and dedication these families have. And then there are times when I'm reading and thinking of my boy and part of me says, "This isn't him. This diagnosis isn't real." I convince myself that he's just quirky and sometimes (but don't tell) I feel like I'm waiting for someone to say, "wait, he doesn't have that. He doesn't need all these treatments."

And then, we go out into the world and I see him with others his age and it hits me, sometimes hard and sometimes painful.

This week, I was hit twice. The first time didn't hurt too much because of the joy in my little guy's face. With G'ma here for the week, we decided to spend a day at Idlewild Park in Ligonier. This is a great park for kids and families and worth the trip if you're ever in Western PA.

It was a great day (hot but still fun) and it happened to be Super Hero Week for the park. Spiderman, The Hulk, Iron Man and Captain America were all going to be there, signing autographs and posing for pictures. Even thought my boy lives for his superheroes (and I'm convinced that Caleb Corporations has evolved from Tony Stark) Caleb actually didn't seem too eager so we took our time getting through the park and then we made it over to the stage shortly before the first set of superheroes were done. Of course, there was a decently long line stretching out into the hot sun of people waiting to get their autographs. We were already pretty hot and I had flashbacks from March and standing in line with Sadie to meet Ariel and Prince Eric on our Disney trip. I really didn't want to relive that experience. Caleb seemed content to go watch the characters from the audience with G'ma so I took Sadie on the ferris wheel. We got on the ride and the superheroes wrapped up. Then, from the top of the wheel, I could hear my boy and the tantrum began. I tried to relax- for many reasons, mostly that leaning forward in our little cart caused it to shake and rock and while I'm not completely scared of heights, in situations like this my very active imagination quickly plays out scenarios of me and my daughter falling to our deaths. So I sat back and strongly encouraged Sadie to sit back and not look for her brother. Of course, I knew G'ma could handle him. I couldn't ask for a better prepared G'ma for Caleb. She's a first grade teacher for many years and happens to have a ton of experience with kids like Caleb. She's often my go to person for advice and strategies for handling him. No problem. Plus, I thought to myself, he hasn't had a real tantrum in months and certainly not out in public. Again, I tried to relax and again, I could still hear my boy losing it. And worse, from our vantage point, I could see the people turning and staring. I swear I could hear their thoughts- I used to be there, the person watching the kid who is way too old having a tantrum. Sadly, I admit it, I was also the one thinking why can't the parents control their kid. I've since learned my lesson.

I wanted to yell for the ride operators to let us off. My mama bear instincts kicked in and I desperately wanted to be there to calm him down and sort things out. Again, not that I didn't trust my mom-in-law. I knew G'ma was doing her best with him. I knew she had an extra difficult situation- a hot, tired, cranky and disappointed boy is not always easy to calm down.

He continued to cry and scream in waves while Sadie and I went round and round and waited as they unloaded the wheel. It seemed to take forever. It was the longest he's carried on like this in ages and it felt like the longest I had ever been stuck on a ferris wheel.

He was still very upset when they let us off and I pulled Sadie over to the bench. I left her with G'ma and grabbed Caleb, still crying, and pulled him away to try to find some place more private. We headed for the bathroom and he settled a little while I put cool water on his hands and face. Then we found a quiet bench to sit and talk about how to solve this problem that made him so upset. All and all, he calmed down pretty easily and apologized to G'ma for carrying on like that.

Then mama stood in line with her boy to wait to meet Captain America and Iron Man.

Once again, all was right in Caleb's world and despite the tantrum, mommy couldn't resist picking up a Captain American doll for the boy to get autographed. (and just so you know, I was not rewarding the tantrum. that's not how it works with these kids. he didn't even ask for the doll and would have been perfectly fine going up to see the characters without it) He stood in line for over an hour, not even taking a break to go for a ride on the carousel. He was determined to not miss his heroes and the boy didn't even complain about the heat.

After getting our autographs and pictures, the boy needed some sensory time so we headed back the ball pit at Jumpin' Jungle. This is my boy's happy place. Feeling all the balls in the ball pit is perfect for him and all his sensory seeking. Not to mention, it was raining off and on and G'ma and I were enjoying the idea of sitting for a bit too.

After the ball pit, it was a climb up the cargo net. Then Sadie and G'ma hung out at the zip line, while Caleb and I went into the Jungle Catch. It's a little netted area with a bunch of air jets and plastic balls that you can set up to float on them. Caleb gets quite a kick out of this place and within minutes he was bouncing and giggling hysterically. Then he started putting his face over the jets and letting his hair stick straight up. I snapped pictures, eager to record the joy on his face and that's what it was, pure joy. My heart melted and then I glanced around at the other kids in there and I noticed it. For the first time I really saw it. He was bouncing and giggling and up on his tiptoes and flapping. Not bad things but things that you see in kids with ASD. But he smiled at me and I forgot all about it. He was happy and that's all that mattered.

2 steps forward, 1 step back

hmm, it really has been awhile. Summer ended and for awhile it was busier than when the kids were in school. They did a week of camps at the museum (Caleb in Dino Camp, Sadie in Art Camp) and then went to vacation Bible school the next week. In the midst of that, Caleb had his evaluation for Kindergarten (testing to see if he would need special ed services or not).

All of this has been interesting and challenging and stressful for this mama. The boy has come through it all really well. I've been so proud and amazed by how he handled the transition from school to summertime. We haven't been completely bump free but we've been much better than previous years.

I'm not sure how much of it is him coping better and how much of it is us learning to read him better, to know when he's had too much and needs his space to quietly read or to spend an entire day in pjs.

I love my boy and I'm thrilled to watch him grow. I'm excited that he's ready to go to Kindergarten, that he's so smart and surprises me each day with some new fact that he's picked up somewhere (yesterday it was about the parts of an ant, head, thorax, abdomen).

At the same time, I'm scared for him. He's leaving my protection, my safe haven where it's just us and we understand him. He's going to be with other adults, with other children and sometimes those adults aren't going to be patient with him and sometimes those kids are going to be mean to him. I tear up thinking about it and yet I know, that's a part of growing up. I know that I can't always be with him and I know that if he's going to understand how to be with others, he's going to need to spend time with others and sometimes that will have to be without me. I know my boy is amazing and funny and such a sweetheart. I also know that he's kind of weird and can be hard to talk to and I'm praying every day that he gets to be with people who fall in love with all of his amazing qualities and can overlook his quirks.

I see him trying so hard and I wish I could make it easy for him. This week he tried a small bite of zucchini. For most people, this would not be something worth posting about. He took the bite without resisting or fighting us. He swallowed it even while gagging and then it all came back up. We don't yet know why his body is like this. We just know that he can't control it. As I was cleaning him up in the kitchen, he kept saying "Mommy, I'm sorry. I tried to keep it in."

Today we had lunch and playtime at McDonald's. It's been a nice place to meet one of Sadie's classmates there. We have a long lunch with plenty of breaks to play and there's a constant flux of kids in to eat and play. It can be stressful though, at least for me. Up in the tubes, I can't see what's going on and I can't always keep track of Caleb and how he's interacting with the other kids. It's a loud place and so of course, my kids are loud too. Unfortunately, Caleb's loud, weird voice sometimes can scare the kids. Caleb will be trying to play but to some kids, his playing can look aggressive. And of course today, after some time playing, a group of girls decided that they didn't really like Caleb being around them. They told their moms that he was trying to hit them. Then they (the girls) told me that he was trying to "beat them up." I did my best to assure them that he wouldn't hit them, that he just liked to be loud. I could see in their eyes, they didn't believe me. I pulled Caleb down to apologize to the girls. The girls gloated at Caleb that they had told his mom. I still have no idea what happened. He says the girls were being mean to him and I can believe that but I've also seen other kids unsure of him when he's yelling and carrying on.

It's these situations that make me nervous. It's these situations that make me pray more fervently for God to send him a special friend to navigate school with all it's complex social situations. We just hope for 1 friend.

Pirate game 2011

Our first Pirate game for the year and it was so much fun. We ended the outing with running the bases. Caleb, Sadie and their friend Simon, stood in line and patiently waited to walk out on the field and run the bases.

here's video of us walking out onto the field




and running the bases...



there will be more pics to come but i'm too tired to retouch right now. Sadly, the Buccos lost but we still had lots of fun

silly monkeys

we went to the zoo the other day and mistakenly brought home 2 monkeys instead of the children...

Easter Morning 2011

It took the kids quite awhile to find them, even with Daddy telling them hot or cold.



and yes, at one point Daddy tells the little girl that she's getting really cold but she assures us that she likes to be cold and then puts on a pretend jacket.

But she finally finds it after much persistance

Disney's Animal Kingdom, in pictures!

Caleb vs Darth Vader!

Caleb took part in Jedi Training Academy at Disney Studios and to pass, he had to go up again Darth Vader and conquer the dark side.

Caleb's Everything Shoppe

Caleb has joined the ranks of small business owner or possibly even corporate CEO. The Everything Shoppe. This is a store that he came up with sometime during the past few months and talks about it every now and then.

This morning during breakfast we got to see how diligently he works at managing his store. He informed us that business was great, that there were people everywhere. The store seems to deal mostly with super hero merchandise and cereal. He mentioned how his Human Torch Flame dolls weren't doing so good. We suggested trying to advertise more. He explained that they came with a turn-offer switch for the flames- a good design element.

During our conversation, Caleb excused himself to take a call from his cell phone (a dedicated CEO working even on Saturday morning). He quickly came back and filled us in on the latest. Apparently his best box maker (the guy in charge of making all the cereal boxes) was ill and needed to go to the doctors. Caleb told us that he had caught diabetes from his cat and was in need of medicine. To make matters worse, he was in Harrisburg and didn't know how to find the hospital. He only knew the one in Pittsburgh and didn't have a GPS.

I'm not sure what this means to the cereal production at Caleb's Everything Shoppe but I suggested that his box maker go to the library and look up directions to the hospital on the computer. Hopefully that will help and Caleb can enjoy the rest of his weekend :-)

Caleb- Through Daddy's Eyes

This post was written by Andy who has a unique understanding of our little guy and a great way of writing about him.

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Caleb Walsh, the hardest working man in the Empire

By now you are probably familiar with the exploits of Margot, Sal, Ziggy, Bella, Queenie, and the plethora of Mexican relatives that form Sadie's imaginary posse. Well, not to be outdone, Caleb has started accumulating his own band of adventurers for his own ongoing saga. But unlike Sadie, Caleb has chosen his companions from the ranks of the various stories and video games he enjoys so much. That's probably not surprising, given how much time the boy spends with his nose in a book. And he is at the age where many boys get engrossed in the world of superheroes, globe trotters, and space adventurers. There's just one little detail that makes me a little concerned: Caleb keeps siding with the villains.

Now, as a parent, you worry about your kids falling in with the wrong crowd. But how do you prepare for you kid becoming friends with supervillains and video game bosses? Of all the characters in the Star Wars universe, Caleb likes to spend time with Emperor Palpatine, evil despot of the Galactic Empire. After playing Super Mario Brothers, Caleb decided to be friends with Bowser, the scourge of the Mushroom Kingdom. He plays with supervillains, Batman's rogue gallery, notorious bounty hunters, and ne'er-do-wells from all sorts of fictional universes. Just where did I go wrong as a father?

Did I do something wrong? By teaching my son that making a few bad choices doesn't make him a bad person, have I blinded him to the fact that there is true evil in the world? Or should I be learning from him? Does he have a capacity for unconditional friendship that I should be seeking to emulate? Perhaps it would help to understand just what it is that makes Caleb choose these friends. Does he have ambitions of global domination, a penchant for mayhem, or perhaps a desire for untold riches? Well, if his ongoing stories are any indication, what Caleb likes best about the forces of evil is not any of these things. No, he's in it for the anonymity of mid-level service positions.

He may be boyhood friends with the emperor of the Galaxy, but there is no job too small for Caleb. He's the tractor beam operator, the TIE fighter repairman, the AT-AT pilot. He tended to the Sarlacc when it was just a baby. The other day he gave Dr. Freeze an eye exam; I can only assume he provides optometry services for all supervillains. He appears to take great pride in doing the jobs that no one else ever seems to have time to do in these fictional worlds. So, why not use all of his prodigious talents for good? As near as I can tell, it's because heroes don't have legions of nameless minions. You see, while he enjoys playing in these worlds, he can't imagine trying to be one of the characters. Those are other people, not him. And since the nature of these stories don't really allow for anonymous heroes, the only place for him is among the ranks of the bad guys.

Caleb loves his books; he wouldn't dare change them just to suit his own pretending. That would violate his Prime Directive. So he goes to some pretty extraordinary lengths to dance between the raindrops of established continuity, to find a way to be a part of the stories as they are. Hence he works behind the scenes, fixing machines, building satellites, and generally keeping the lights on, all the while bearing witness to these epic tales. He always manages to be right there whenever something important is happening. But at just the wrong (right?) moment, fate will intervene to keep Caleb from having any impact. "I was just about to grab Chewbacca, but I tripped." "I tried to leap into action, but I fell into the sand and got stuck." "I almost stopped Han Solo, but Emperor Palpatine had been eating fruit and I slipped on a banana peel." These near misses never bother him; whatever happened couldn't have happened any other way.

Maybe one day Caleb will get to be the hero of his own story. I guess being friends with a villain doesn't always mean you have to become one yourself. Many heroes were close friends with their archnemesis at some point. Caleb's compassion and selfless desire to help others certainly seem like traits of a hero, not a villain. And he's certainly learning a lot of useful skills. His favorite stories may be set in stone, but his story is still largely unwritten. I look forward to seeing it unfold. And in the meantime, whenever I watch "Star Wars" and see that Storm Trooper smack his head on a door as he makes his way through the Death Star, I'll know that isn't just any faceless henchman. That's my Caleb, the hardest working man in the Empire.

Romeo and Juliet at McDonalds

The other day was conference day. The kids' preschool does parent/teacher conferences twice a year and they're pretty helpful (especially with trying to judge where Caleb is with things). The disappointing thing about conferences is that they are on a school day so no school and normally that's not a bad thing but when you've missed most of January due to snow and ice it's kind of frustrating to have another day off for the kids.

Well, to reward them for making it through their first, mostly full week of school since December, I decided to take them to McDonald's. There's one near our house that has a nice indoor playground and the kids have been bugging me to go there since we moved out here.

We got there, ordered and went to sit and eat in the play area. I have to say, it was nicer than I had expected. It was clean and most importantly, it didn't smell funny. The kids were really good and ate their lunches. Caleb even ate the chicken nuggets (he's been objecting to them on past trips) When they finished eating, I let them play. There were quite a few kids there and I would say, in less than 10 minutes, Sadie had a little boy just a bit older than her, following her around.

The kids all played for awhile. I was excited to see Caleb involved in the games too. They were pretty much just chasing each other through the tubes and while it makes me nervous, I was happy that things were going so well. Caleb is doing better with other kids but when he gets excited, he can seem aggressive. He yells and growls a lot which other kids can interpret as threatening and, well, we've had things escalate to where he's hitting. Previously this wasn't such a big problem but as he's getting bigger and older it's a more difficult situation. Most parents don't expect a 5 yr old to be hitting and without understanding his circumstances, it makes for a very uncomfortable situation.

I sat back and let the kids enjoy playing for a while and it was nice. They came over for some sips of milk and to check on their Happy Meal prizes. Then I noticed that Sadie was spending more time with her little friend and Caleb was off on his own. Again, this happens some time so I wasn't too concerned. Then I noticed Sadie and her friend running away from Caleb and I started paying a bit more attention. Sure enough, Sadie's little friend was getting a little possessive of the Sadie-girl and didn't seem to want to share her attention, even with her big brother.

Caleb came by and I told him they could each do one more thing and then we would get ready to go. Of course the one thing Caleb wanted to do was to sit in a car with Sadie and Sadie didn't want to leave her friend. I tried to persuade Caleb to let her have some space and then I tried to persuade Sadie to indulge her brother and none of it was working. Caleb started getting upset and I was done and so announced that we were going home. This was when Sadie's little friend decided to come over and taunt Caleb for having to go home. Big mistake!!

Mama bear kicked in and I gave the little guy a very serious mommy-glare and said "Do Not Do That. We Don't Act Like That." Not yelling, but talking very sternly to this young man who quickly backed off and got quiet.

I calmed Caleb down and then had an upset Sadie who wasn't ready to go (of course- did I mention, this started out like a great way to spend the afternoon?) I tried to explain to Sadie that if she and her friend couldn't be nice and play with Caleb, then we couldn't stay. Sadie was heart-broken and so I had to help her with her shoes. I was done. While doing this, I noticed her little friend inching back over towards us. I told Sadie she should say good bye to her friend as he came over. He got very close and very sweetly said "Good-bye Sadie, I love you." Sadie rattled off a "Good-bye, I love you" too and that was the end.

I was sooooo done with McDonald's and soooooo not ready for my 4 yr old to have little boys telling her they love her.

We are in soooooo much trouble with this one

questions....

Here's my question... how do you explain heaven and being part of God's family to a 5 yr old who doesn't like change?

We have a great church. We have a great church with a great children's ministry and Miss Sherry is absolutely wonderful with the kids. Yesterday was Sadie's first time as a 4 yr old in the 4 yr old class for children's church. This class is in the big room and i think the ages are 4-7 yrs old. It was a big change but she seemed to do well, especially since she could sit next to her brother.

We didn't hear much about the morning until dinner time last night. Then Caleb started telling us about Nicodemus. Then Sadie gave her very good explanation for being born again in her most serious voice "Jesus had to come and save us from our sins." And Caleb added that Granny was born again but she didn't become a baby again. I was very excited to see our kids working through this and eager to see where it went.

Knowing that my husband became Christian as a child, I prompted "Hey guys, you know, Daddy is born again?" And he explained to the kids how he prayed with his mommy and daddy when he was little to be able to go to heaven.

So there it was, we had talked about being born again, about being in God's family, about going to heaven. Were the kids ready to pray? I asked "Do you think you want to go to heaven?" Sadie very quickly nodded and said "yes, sure do." I looked at Caleb "I don't think so."

Then we realized, this boy will resist going to Disney World just because it's different and unfamiliar. It doesn't matter how great heaven is, he's not going to want to go. So how do we explain this to him? I found it to be a funny turn of events. I'm confident that God knows his heart and therefore knows his struggles so I'm not too worried that we didn't pray last night. I think it will be interesting to watch how God moves in his heart to help him understand these things.

The Case of the Missing Zuzu Pet

It was a quiet afternoon in the Walsh house. Mom and the kids had finally finished un-decorating the Christmas tree. Suddenly, Sadie appeared with her Zuzu pet that she had gotten for Christmas. In order to travel, Daddy had wisely removed the batteries (on/off switches should be required for all toys) but Mommy wasn't sure where he had put them.

"Wait 'til Daddy comes home" Mommy told Sadie and she happily bounded away to find new fun and wait for Daddy. The Zuzu pets were forgotten... or so we thought.

After dinner, Sadie found her pet once again and asked to get it working. Daddy took over and soon we had a Zuzu pet rolling and squeaking around the floor. Daddy also mentioned to Caleb that if he brought his Zuzu pet over, Daddy would fix it too.

"But I don't know where it is" Caleb answered.

We sent him upstairs to look for it and sent Sadie with him- since she was the one who had found them first. The kids searched upstairs for a bit and came down empty-handed and disappointed so Daddy and Mommy began searching too. We searched book bags and other possible places downstairs but couldn't find anything. So we went upstairs. After a bit more searching, success! Caleb's Zuzu pet was right in the middle of his bedroom floor!

"Guys, how did you not see Caleb's Zuzu pet on the floor? What were you looking for?" Daddy asked.

"We were looking for footprints and found some and followed them downstairs" Caleb explained.

Not sure what Zuzu pet footprints look like and really not sure what footprints they were following.

New Pictures!

So last spring I picked up a backdrop stand to use with my photography and it's been the best thing! I didn't manage to get the kids out doors for their photos this year so I set up the back drop and used our extra room as a studio to snap some birthday/Christmas pictures of the kids.

It wasn't as extensive of a photo session as my clients get but then my kids are so used to having the camera in their faces that they object quite a bit when I try to convince them to model for me. Sadie, though, if promised make-up, will be quite the model.

I don't have a ton to share- still finishing up client work for the holidays- but I had to post these so my mom could see them :-)

finding balance when illness happens

i love my kids. i really, really, deep down in my soul, do-anything-for-them, love my kids. that said, there are moments where i don't know how to do that best or show it equally and that's something that i'm finding so hard.

i think it's more difficult when you have a kid with special needs and i'm still trying to get used to thinking about Caleb in that way. i always find myself trying to minimize and downplay his struggles, not that they are huge struggles but that almost if i accept them it makes his diagnosis more real. i still have difficulty accepting that he's on the spectrum and that he's going to struggle with things and i still forget that struggles aren't always bad for us.

anyways...

Caleb and Sadie each demand a lot of attention and for very different reasons. Caleb struggles with social situations and managing his tantrums and outbursts. Each week he spends 8 hours with his TSS and a couple of hours with his BSC and now we're adding occupational therapy to the mix. all of these things help him a great deal but it's a lot of attention that i think he would prefer not to have. on the other hand, Sadie will not be ignored. she almost seems to crave attention, at least most of the time and when big brother seems to be getting a lot of attention, it can be very difficult for a little girl.

a few weeks ago (Saturday), Sadie came down with a fever. not super high but significant enough to slow her down. we didn't see anything else wrong with her and so we administered ibuprofen and figured it would clear up in a day or two. Monday came and the fever was still there and still making her uncomfortable. we'd give her medicine in the morning, about lunch she would perk up for a bit and then by the afternoon she would be miserable. Tuesday morning was originally supposed to be her 4 yr checkup but instead became a sick visit when they saw the fever. the doctor looked her over and i still thought we were going to be sent home, convinced that she had the flu and kicking myself for not getting her the vaccine weeks ago at her brother's appointment. our doctor instead had a very serious tone and said that he wanted tests done. he mentioned mono, TB and the need for a chest x-ray and then the possibility of this Kawasaki syndrome, a very serious concern that would require a stay in the hospital. he pointed out Sadie's swollen lymph node on her neck- "her hurt neck" that i thought was code for a sore throat. then it was off to Children's for her tests.

for the rest of the week, Sadie became my focus. trying to take care of her fever, keep an eye out for other symptoms and generally be there for her. at the same time, trying to keep things as normal as possible for Caleb. Wednesday afternoon was the most difficult and the most conflicting moment for me. i noticed a red rash on the back of Sadie's shoulder and after reading up on the symptoms of Kawasaki (thank you webMD), knew that i needed to call the doctor. i filled him in on the change in her condition and he promised to call back with directions for us. Caleb was working with his TSS, a usual Wednesday afternoon but at the same time a lighter schedule then usual. at 3:15 the doctor's office called asking us to be there for 3:45. from the new house it takes us a good 20-30 min to get into Shadyside but i said we'd be there. i went upstairs and told Caleb we needed to go to the doctor's office for Sadie. he immediately said no and then the struggle began.

my little guy had no understanding of Sadie's need to get to the doctor's not because he didn't care but simply because he was focused on this unexpected change in his day. when he gets hit with these changes, sometimes he just says no and that's when i don't always know what to do. thankfully, i had his TSS there. she worked with him, talking to him, explaining to him, and coaxing him when i just didn't have the time or the patience to. i went back downstairs and gathered up Sadie. i took her down to the garage. Caleb still was refusing to come. i put her in the car and felt so bad leaving her sick and miserable even for the few moments it would take to go back upstairs to get her brother. again, thankfully, Caleb continued to refuse to go but he didn't tantrum. he's had trouble lately with tantrums and has had a few recently that lasted a good 20 minutes- time i didn't have in this instant. he let me carry him to the car, no shoes and no jacket. he also let me put him in and buckle him up. this would not have happened if he had been mid-tantrum. have you ever tried to buckle a 5 yr old in a seatbelt? it doesn't work well. i was so thankful that it went as smoothly as it did.

however, it still frustrated me that at this moment when i really needed to focus just on Sadie, i couldn't. i don't know, maybe i'm naive to think that parenting can be balanced that easily, maybe it's always going to be a give and take with my two. it did make me worry that Sadie might feel that she never gets the spotlight completely- that maybe she will continue to "demand" our attention to balance out all that we need to give her brother. it's a very frustrating situation to be in.

we made it to the doctor's relatively on time. her doctor was pretty confident that it was Kawasaki and got in contact with Children's. then he sent us home to wait one more day. Thursday morning we got the go ahead to take her to the hospital and get her admitted. fortunately, Caleb's preschool is fairly close to the hospital so he got to go to preschool, and we got to get Sadie set up in the hospital.

she was very brave getting an IV and numerous temp and blood pressure checks. they did an echo-cardiogram and finally started her treatment, an immuno-globulin drip. she bounced back pretty quick and enjoyed getting to watch a bunch of movies and cartoons, not to mention all the get well presents that appeared.

Friday afternoon, Caleb came to visit and he was able to see that Sadie was okay and that the hospital wasn't as scary as he thought it would be. they even spent a couple hours playing in the playroom together.

after a day of observation, Sadie was released to go home and we were all thankful to have her back.

she's expected to make a complete recovery. she has a follow-up echo-cardiogram in January and until then, she's enjoying a baby aspirin a day to prevent clotting and keep her heart in good shape in case there was any damage to it. we're so thankful that everything went so well.

and now things are back to normal... or as normal as they get here :-)

Out with the trash

This morning was a difficult morning. No, this morning was an almost impossible morning- a feverish 4 yr old, a tantrum-ing 5 yr old, and a mommy quickly learning that her quiet morning to herself was going poof. For extra fun, add poop on the floor, a naked tantrum-ing 5 yr old, and the added drama that illness needs when your 4 yr old is a diva in the making. It was not fun.

The real parenting moment though, was when Caleb, finally bathed, calmed and in fresh pjs, looked at me with watery eyes and a pout-y mouth and asked if I was going to put him out with the trash. It was heartbreaking to hear and immediately my eyes teared up too. I told him that I would never do that and that no matter what, he will always be my favorite boy. Then he asked why and again my heart just melted as I hugged him and, looking him in the eye, assured him that I love him so very much.

It made me think that no matter how much people tell us that they love us sometimes, in some moments, we still need that reassurance that their love will always be there.

Halloween 2010

Just needed to post that the boy was Superman for the third year in a row and yes, the costume still fit and may still fit next year. I'm just happy that he's willing to dress-up and go trick or treating.

So here's a little time line :-)







And you can't ignore Miss Cinderella!

Caleb turns 5!

Another September and another year older for the boy. I was feeling even more nostalgic about it this year. Since he missed the birthday cut-off for kindergarten, this will be his last year spending most of his time with me. I can't believe he's five! I look at his baby pictures and think, is that really him with those big serious eyes taking everything in and that quick smile and of course, how ticklish and quick to giggle. My baby boy is really not a baby any more. He's a full blown little boy complete with fascinations for matchbox cars, legos, dinosaurs and super heroes.

This year has been full of some huge changes and the boy has come through them with flying colors. Grammie M lost her battle with cancer last fall. It was devastating for our family but we were able to make some great memories in those last weeks. In the midst of losing Grammie, Caleb managed to master the potty. This was huge considering that we were spending lots of time driving to and from Latrobe/Derry without any real schedule. Part of me likes to think that God showed a little mercy on me by having Caleb finally get it. It made a horrible time just a tiny bit easier.

There were questions about Grammie and lots of talk of heaven and God. Caleb was my little sunshine through it all- quick to offer a hug and always surprising me with an unprompted "I wuv you, Mommy."

Preschool was another change for him- 3 mornings a week and with new teachers. This year he was able to read and once the teachers were able to print up a schedule for him, the transitions went more smoothly. It also helped that he had a couple of buddies in his class. Andrew and Brandon were visiting from Canada and spent the fall semester in class with Caleb and on many, many outside play-dates.

Caleb continues to love reading and we're up to beginning chapter books. Mercy Watson is still a favorite but we've expanded to The Magic Treehouse books and beginning Marvel comics. Caleb loves Captain America and Ironman but Superman and Spiderman are also pretty high up on his list.

While he excels at reading, he struggles with writing and because of that struggle (I think) he resists it more. His poor teachers had quite the fight to get him to participate in the morning art activity and we have a very incomplete alphabet book but he's trying little by little. I'm not going to ask more of him 'cause this is only preschool.

At preschool, he continues to love music and movement and story time. This year also brought classroom jobs. He seemed to really like passing out napkins and door holder is always a popular job. The jobs have carried over home a bit too. He loves to be given "jobs" to do. If asked to pick up toys, whining will begin but if I simply say "I have a job for you" there's no whining and the task usually gets completed.

Caleb is still our policeman but we've also seen him improve with playing too. He spent one afternoon pretending to be a conductor for a train and taking us all over the country. Sadie is pretty successful in getting him to go along with her adventures. We've even had some issues with Margot (Sadie's imaginary friend) playing with Caleb instead of Sadie. You never know what's going to come up this house. Most recently, there have been lots of battles with evildoers.

This spring we started getting Caleb services to deal with some of his Asperger's issues. Stephanie and Thao came to our house and began working with him in June. They worked on getting him through transitions and used to doing tasks that he doesn't really like. They were really good with him and helpful for us, figuring out how to navigate with Caleb's struggles. The move interrupted things for a bit but I still think the time was helpful. Now at the new house, we've just started with a new TSS and BSC and they're excited to work with Caleb.

Over the summer, we bought and built a new house. This was probably the best way that we could have handled moving. They broke ground at the end of April. We were able to come of out and check it out through all the stages of building. This seemed to really help Caleb get use to the idea of a new house. Once we discussed that there would be potties and that they're toys would be at the new house, they were very excited. We've been in the house for almost 2 months and Caleb has loved it. No tantrums, no sleepless nights, and we now have drive-way dump-truck luge for entertainment.

The little boy is growing up and surprising us with new things everyday. Happy Birthday Monkey-Man!



First time on a horse at Derry Ag Fair



Soccer Skills



The Big Blizzard- we finally got him to play outside with gloves and a hat



Getting Our Christmas Tree



Halloween '09

Drive-way, Dump-truck Luge

This is our new entertainment at the house. I should probably discourage them from doing this but they're having such a good time and I actually get a kick out of Caleb doing something reasonably dangerous. This might all change when they end up needing a trip to the ER.