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

allergies

So they're saying that this year has been absolutely terrible for allergies and I can certainly believe it. Andy's been living on zyrtec since March and even though I've never really suffered from allergies, I've found myself more congested and uncomfortable then ever.

Sadie, however, has developed a new and unusual allergy. She's decided that she's allergic to turtles. Now we're not sure if this means that she can't be around turtles or if it's more that she can't eat them but she's pretty insistent on it. Even at the doctor's recently, the doc asked me if she had any allergies (wanting to be sure that she would be okay on antibiotics) but before I could respond, Sadie informed the doc of her turtle allergy. The doc looked at me wide-eyed and I really didn't know what to say, except that "yep, that's Sadie." In defense of the doc, she doesn't usually see Sadie. Somehow, I think that Dr. R, her usual pediatrician would have just laughed it off. He's definitely used to Sadie's stories.

So, while most households need to be nut-free, we will be going turtle free but I have to admit, I'm curious as to what her reaction is to turtles.

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

The Magic Kingdom- in pictures

The Princess is Home











Wish I could have managed a better shot of the castle but it just wasn't going to happen this time.