Tuesday, August 19, 2014

Posing with T-Rex

Here are a few pics from last week when E's kindergarten teacher made a skydive! Can you tell Elijah loves her? (Oops, Koda the dog photo-bombed this one.)


Time for silly faces?! :)


See that spot in the sky? That's Dan and Jen! Her hubby and sweet baby girl were watching them closely.


Perfect sunset landing! 


And today we took a totally impromptu trip to Valleyfair! The other night I remembered that one of the very generous gifts we have been given as a Wish Family is a year's worth of free admission (1x at each place) to MANY amusement parks across the country. Since there aren't many days left in the summer that could work, Dan and I decided we would go to Valleyfair today...at the very last minute. Thank you, GKTW! The boys were sooooo excited. They were squealing and jumping up and down when we told them where we were going. It was their first time ever! We live a few miles from VF, so we've seen it many many times but have just never gone as a family.

We were given a few "extras," as GKTW is known to do. Elijah got a Snoopy stuffed animal and we also got access into the Dinosaurs Attack part of the park. Sam was afraid of some of it, but the boys seemed to enjoy it overall.

Here are my three boys, totally unique in their responses to "Pose in front of the T-Rex for me!"

Elijah: ALL SMILES and totally agreeable as he poses perfectly, looking straight at the camera. (my literal guy)


Sammy: Puts his hands in front of his face as he says, "NEVER EVER." (my independent guy)


Dan: Makes fun of the poor T-Rex's short arms. :)  (my silly guy)


We explored Planet Snoopy and the boys were able to ride a lot of the rides in that area. They had such a blast! We will try to get to VF as a family once/year.


Whoa, what?! Sammy actually posed with Elijah and Snoopy?? This was a small miracle and I was downright shocked as I took this photo. Notice the lump in his cheek? Yeah, that's a mini donut.


The ferris wheel was one of Sammy's picks and he LOVED it. We love riding this ride together as a family whenever we see one. Elijah's analysis of the VF version: "It's pretty slow, but it was fun."


Elijah was super excited to see the T-Rex and wanted to pose with the sign. He was very interested in learning about where each dinosaur lived. "Ohhh! This one lived in Asia, Mom!" "Hmm, he was from Utah!" "Oh my, this guy lived in BRAZIL!"


Dan and I analyzed every little thing about Elijah today. After 30 minutes of being at the park he appeared overwhelmed, confused and exhausted from all of the different stimuli bombarding his brain. We both saw it and adjusted our behavior a bit to try to help. At one point we were waiting to get on the ferris wheel and Elijah started screaming about the line (there were 2 people in front of us) and how long it was and how long it was going to take and on and on. Then he said, "Give me a Mama Mountain!" This is his way of telling me that he wants me to give him a piggy-back ride. We weren't even moving and there was nowhere for us to go, so I calmly told him that it wasn't an appropriate time to do a Mama Mountain. He has been asking for these quite a bit lately at very random times, so Dan and I chatted quick while standing in line and concluded that maybe he just wanted to be physically close (safe) when he feels out of control. From that point on, I started giving him big squeezes/hugs whenever I could. I think it helped because overall he did GREAT today. He started to unravel a few times, but pulled it together and did so well. Dan and I were both super impressed and surprised at the end of the day. He even made it to PT/OT in the late afternoon and had great behavior there, as well. Success!

We ended our time at Valleyfair by stopping by the age-guessing booth. I always stump them and I win an animal for the boys every single time. :)

We have E's second Fraser appointment tomorrow! Also a bit of fun and work and errands, etc. Thanks for checking in!

Monday, August 18, 2014

Burning eyeballs

We must be super busy because I haven't had a free moment to sit down and write a post! My dad and stepmom were able to spend the entire day with the boys on Saturday while Dan and I worked. They had a blast together, playing, going to the park, getting hair cuts, getting new books at the book store and building Lego creations. We had to say good-bye yesterday morning as they headed back toward North Carolina. :( Both boys have been talking a lot about how much they miss Grammie and Gramps. It is always so sad to say good-bye.

I took pics at a wedding on Saturday and have been totally wiped out since. It is tough business! But sooo much fun, too. I love how every wedding is similar, yet so different. Each one has its own unique story and people and traditions and details. Despite the blisters on my feet and burning eyeballs, I love my job.

Elijah's kindergarten teacher came to the dropzone last week to make a skydive! She had a blast! It was so fun to see the big happy grin on her face when she landed. Jumping out of an airplane is such a unique experience and it is something that is impossible to describe in words. I always love seeing the so-THAT'S-what-it's-like look on people's faces when they land.

Dan has been working since Thursday and the boys and I have kind of just been scraping by these past couple days. I've been exhausted, so we are doing bits of laundry and cleaning, taking trips to the park and running errands. Dan has the next two days off, so I'm hoping for some catch-up!

We have been continuing to learn about how Elijah processes information as second grade draws near. In a way I'm afraid to start the year but at the same time I'm eager to just get going! In the next week or so I plan to write up a bulleted report for E's team. I want to explain NLD in a nutshell since not too many people seem familiar with it. I also want to write out Elijah's warning signs for being overwhelmed/confused and give suggestions about things that might help if he gets off track. The bottom line is that he needs to feel safe and acting out is his way of letting us know that. I have a few things I've been trying that seem to help distract him. I'm hoping we can give his teacher enough info before the year begins to be helpful!

E's follow-up appointment with Dr. L (ENT) went fine last week. He saw a bit of "granulation" in his ear, which is apparently just a bit of redness and fairly normal after ear surgery. We're doing ear drops for 2 weeks and a hearing test mid-Sept. The first Fraser appointment went great. Appointment #2 is Wednesday.

Thank you for peeking in and I hope you all have a great week!


Tuesday, August 12, 2014

Okoboji family reunion 2014 and a visit with the developmental ped

We are back from our 2014 Okoboji family adventure. It seems like our trip went by so quickly. Dan was able to be with us for the first few days, but then had to head back to work in the sky. The boys and I missed him terribly after he left. They said about a hundred times, "I MISS DADDY!" We had plenty of distraction, though, with tons of family surrounding us constantly. Elijah and Sammy have some older second cousins who lavish love upon them. We spent some time on my uncle's boat and Elijah particularly was in HEAVEN. Oh my goodness that boy loves to go fast. His arms were flapping a hundred miles a minute with a huge smile smeared on his face as he screamed, "GO FASTER! FAAAASTERRRR!" The boys also got some partial lake time. It was only partial because Elijah has not been cleared by ENT to swim yet (hopefully this will happen tomorrow). 


Dan had to leave before the bulk of the family arrived, so he missed out on family photos. :( We were able to capture a bunch of family shots, including this one of my dad/stepmom, older brother and us (minus Dan).


We had an incredible time, but it has felt so good to be at home. I don't think I've ever loved my home/bed so much!

Today we brought Elijah to see his developmental pediatrician, the incredible Dr. M. We chatted about a few key issues: Elijah's inability to prioritize bodily functions/needs, his lack of self-awareness, his anxiety and his lingering potty issues. Oh how I appreciate smart doctors. A few things that he said today struck a chord since these are thoughts/realizations I've had recently.

When we described E's impulsiveness and tendency to break down easily, he said something along these lines: Elijah requires so much energy and patience and control just to get through every day. Every little thing is either overwhelming or confusing for him, and that depletes his resources. So basically, he is at 211 degrees all the time. When the littlest thing happens, he reaches boiling point and explodes. To us it may seem like a minor issue, but for him it may be the thing that breaks him. I did a really good job of holding back tears as Dr. M spoke these words. It makes me feel so sad that Elijah is running on empty basically all the time, struggling with every little thing that comes his way. We've of course known all of this for some time, but it was somehow different hearing it from the doctor.

Dr. M also mentioned how Elijah's tendency to rely on facts is significant. It tells us that he feels out of control most of the time and clings to facts in order to feel secure. So much of his life feels uncertain, so he thrives on talking and learning about concrete things. Geography, history, time, birth dates, ages, schedules, events...these are all things he talks about CONSTANTLY. At one point during the appointment today Dr. M looked at Elijah and said, "I love your tie!" (He wore his Easter tie to the visit.) Without missing a beat, E replied, "Thank you! I love yours, too!" Dr. M made a comment that even though that is probably a learned thing, it is a great sign that Elijah is able to reply in such a way that makes people want to engage with him. A step in the right direction and a tiny sign that our efforts are making a difference.

We also chatted about potty. His thoughts were encouraging. Bottom line: be patient. Eventually E will be able to move this up on his list of priorities.

Dr. M recommended that if E has trouble in school again this year, we should consider putting him on an SSRI to take the edge off his anxiety. In the meantime, we will just keep doing our best! Early bed times, mapping out our weeks on the white board, getting him sufficient sunlight, disciplining consistently and LOVING him so he feels secure and safe.

Tomorrow we have post-surgery follow-up with ENT and our first appointment with Fraser (super hopeful/excited about this one). Elijah and Sammy get to spend an entire day on Saturday with their awesome Grammie and Gramps while Dan and I work. They are so excited!

Thanks for checking in!! Have a great week!

Saturday, August 2, 2014

Back-up dancer Elijah!

Here is a super cute video of Elijah being another boy's back-up dancer at the Heart Camp Talent Show on Friday. :) I saw him walk out with the wig-hat-clocknecklace ensemble and smiled. That is our oldest boy for sure. I love it.

video

Elijah's talent was joke-telling and he did GREAT! We rehearsed his performance a few times beforehand and I wrote a note card out for him. I can't show you, though, because he decided to tell the jokes while lying on the ground (I'll be more clear next time). I held my camera way over my head to capture the scene, but part of my hand got in the way and I missed it. :( Sad.

Heart camp was awesome this year! I feel like Elijah got much more out of it (comparing to last year) and was way more excited about it. As Sammy and I watched the talent show, I realized that every single heart kid is so special in such an awesome and unique way. These kids are incredible and so spunky and have such personalities!

I want to say a quick "thank you" to the helpful and encouraging comments/emails we have received recently! Thank you to a handful of you who we've never even met, yet who we receive such great insight from. I LOVED the early-morning quiet time thoughts, Lauren! I think you're onto something there. And Maggie, getting the class schedule beforehand is a great suggestion. We'll definitely do this! Thank you!! We are ALWAYS open to new ideas. It's part of the reason I keep up with this blog.

I'm meeting a very old (well, SHE's not very old, but I've known her for a very long time...just to clarify!) friend for lunch on Monday. She has a son with special needs and also has worked in the sp-ed department at a nearby school for years. She has both perspectives, home and school, and has graciously offered to share insight with me. I feel so grateful!

The boys and I are spending a quick night at the dz and will head back home in the am for church and then laundry/packing at home. We will be heading out on Tuesday for an almost-week-long trip to Iowa to spend time with family. We are excited! PLEASE pray for Elijah to feel safe and secure and for good sleep and amazingly awesome behavior while we're away. Thanks for checking in! Have a great weekend!!

Wednesday, July 30, 2014

Peeling back the onion. (And fun pics at the end, if you get that far!)

Approximately 90% of my brain has been used to figure Elijah out this summer. It's been worth it because this week I finally feel like I'm maybe sort-of kind-of beginning to understand the way he thinks and organizes his thoughts. The following paragraphs may or may not make sense, so please bear with me. I have a lot on my mind but I have not pre-organized any of it.

We have really buckled down with routine and schedules. Our routine has become even more strict (if that is even possible). I write very detailed schedules on the white board, including times that everything will be happening throughout each day. I have to remind Elijah to glance at it a couple times every day and he takes it in. I can tell it helps to make him feel secure. He needs the predictability. Now that I'm writing exact times down, I have to do my very best to stick to them! If I write down that dinner is at 5:00, I need to make sure that happens.

There are so many layers to the challenges we tackle daily, so I sometimes forget the really helpful little details that we've learned along the way. Like making sure Elijah is exposed to sunlight (or faux sunlight) in the late afternoons/evenings due to his sleep disorder. A few days last week when it was raining and we didn't go outside, he was getting up REALLY early the mornings that followed. I've been making sure he goes outside as much as possible after 3:00 when it's doable. On rainy days, we will be breaking out his light again like we did through the winter. It seems to help enough to continue with it.

I've been extra zoned into what works and what doesn't work with him lately. He relies on anything that involves details or facts. When he meets someone new he asks them, "What is your name? How old are you? Where do you live? When is your birthday?" Then he says, "My name is Elijah. I'm seven. I turned seven on February 20th. I'm going to be in second grade in September. My mom is 39. She turned 39 on July 23rd. That was a Wednesday." He engrosses himself in geography and history (facts). He now knows where every single country in the world is located on the globe, can you believe that?! He knows how many countries are in each continent, what their flags look like, etc. He constantly checks the weather (I haven't shared with him yet that forecasts aren't factual, but right now he thinks it's concrete information). He falls apart whenever my answer to one of his questions is, "I don't know." He cannot handle that uncertainty and has a meltdown. I'm still figuring out how to deal with this (ideas welcome!). The other day he dumped a bunch of markers onto the floor. I said, "Elijah, you are going to have to pick these up." He dropped to the floor and began flopping around and screaming, "I caaaaan't! I don't wannnnt to! I CAN'T DO IT!!!!!" So I said, "Please pick up the green, red and blue markers," and he instantly was by my side looking for the markers in that exact order. "Green, red and blue? Here you go!" I have been trying to be as specific as possible and also to be as factual as possible when interacting with him. Unless we are doing silly tickle-time. Then nothing is factual and everything is out-of-control and awesomely silly. :)

I have also used facts as a distraction when he seems to be on the verge of falling apart. I will ask something like, "Can you tell me who the 16th president of the United States was?" and he is all over that and will usually follow it up with another question. Music has been a great distraction for him lately, too, so I use that especially in the car when things are beginning to unravel. He has a few books about the U.S. and magnets that he likes to look at with all of the U.S. presidents, so directing him to things like that helps sometimes.

And as always, we've been putting him to bed consistently early at night. According to the fitbit, he is sleeping on average 9 hours/night, which is great!

We continue to work on potty issues and every couple of days I seem to have a new idea. The other morning I had the thought to draw pause buttons on paper and cut them out so he could put them in his pocket. I've been telling him all summer to "push the pause button" when his body needs to go potty. I figure having an actual "button" to push (or just hold) might help.

I've had a few ideas for the upcoming school year. It might be helpful to write out some short questions ("Do you need help?" "Do you need a break?" "Do you understand?") and taping them to his desk so his teacher can point to them if he appears lost/overwhelmed (as opposed to asking him in front of his peers). I would like for there to be a safe place for him to go when he feels overwhelmed, and hopefully before he begins acting out. We are constantly trying to make him more self-aware. This has been a big challenge. He has such a difficult time describing general feelings or events. He is really good at explaining details, but main ideas and generalizations are really tough for him to grasp or explain.

Heart camp has been going great! He is so much more excited about being there this year. He seems to be having a blast. Sammy misses him while he is gone and they devour each other once they are reunited. Yesterday was "costume day," so he wore his new crayon costume. I found the following photo on the camp's website today. He spruced up his outfit a bit, I see. That's our boy! :)


Dan was home today so we all ventured out after camp to get our first-ever pet! Or pets, I should say. The boys are now owners of two betta fish! Elijah named his fish "Bluey" and Sammy named his "Fishy-Wishy." We are all so happy to have new family members! I found both boys gazing into the tank many times throughout the afternoon.


Here is a funny pic I took this morning after I told the boys, "NO toys at the table!" As always, they were good at finding the loophole. :) (Notice Elijah is studying presidents on the placemat.)


I think that's all for tonight, whew! Hubby-snuggle time and bed is upon me. Thanks for peeking in!

Monday, July 28, 2014

Second year at heart camp!

We had a fun weekend spent mostly at the dropzone. I'll maybe save some of my Elijah-thoughts for another post and focus on other things tonight! I captured a couple cute smiley pics of the boys over the weekend.



Today was Elijah's first day of his second year at heart camp! It sounds like he had a blast! On my way to pick him up I was saying this prayer: "Please no poop or behavior issues, please no poop or behavior issues.." Repeat x 200. From what I gathered, there were no poop or behavior issues! He was sooo excited to tell me all about his morning, which was a big change from last year. He is able to wrap his head around what heart camp means for the first time. "Sammy can't go to heart camp because he hasn't had heart surgery, right, Mom? Not many kids have heart surgery, right?" He was eager to tell me about petting a chicken and playing silly games and preparing for the talent show on Friday. I have been praying so hard that he will make a connection with a fellow (local) heart friend. We will see how the week pans out!

Sammy and Elijah were both sad this morning before camp. Elijah kept saying, "But I'm going to miss Sammy today!" and Sammy kept saying, "I miss Elijah sooo much!" When we saw Elijah walking down the road to meet us, Sammy ran into his arms, saying, "BUDDY!" These boys love each other so dang much.

video

He did the EXACT same thing last year, but Elijah wasn't as receptive then. :)

video

We have a lot going on this week! It'll be a crazy one, but my post-surgery fog finally seems to have lifted. I actually planned a week's worth of dinners, wrote out a detailed schedule through next Sunday on the white board and have planned out a few photo shoots, work days and some fun time. I love having a clear head!

Thanks for checking in and I hope you all had a great weekend!

Thursday, July 24, 2014

Dirty toes

My birthday was awesome yesterday! My boys treated me to an incredible day. I woke up to a homemade breakfast sandwich (sooo yummy...Dan makes the BEST) while Sammy and Elijah made me food in their play kitchen. Elijah made me a Salt & Pepper Cake and Sammy made me Vegetable-Fruit Soup. Both were delicious! :) After I ate their food, Elijah "cleaned" up their kitchen and was pretty proud of himself for doing so.

Before I opened my gifts, Sammy said, "Here Mom! Open your new purple water bottle!" He couldn't understand why he shouldn't have said that. It was cute. And I loved the water bottle. I will forever have the image etched in my mind of both boys standing excitedly in front of me, literally jumping and bouncing around with enormous smiles and flapping arms because they were so excited to give me the gifts that they had picked out. I have the best boys! They gave me 39 spanks and then Sammy said to me, "Mom....I love your dirty toes." Oh my goodness, that boy. He is so funny. Dan and I got away for a quick dinner last night and that was delicious. It was a great 39th birthday!

We had such a fun morning today! We spent the morning with our friends Jen (E's awesome kindergarten teacher turned friend) and Allison (her adorable baby girl). We went to the music class that they attend every week and it was so much fun! Aside from a 15-second bit of "trouble" Elijah gave me, the boys did awesome and had such a fun time. Both boys loved the musical triangles and I noticed that Elijah was clanging his mini cymbals together with impeccable rhythm. I remembered from one of my NLD books that NLD kids typically are musically inclined especially in the realm of drums or instruments that require rhythm. Hmmm, something to keep in the back of my head. We played at Jen and Allison's house for a bit afterward and the boys had so much fun!


I feel so grateful for the ideas that have been sent our way regarding Elijah and some of things he has been struggling with. Thank you so much! My soon-to-be sis-in-law (right, Joel?) is going to school to become a child behavioral analyst, so she sent me tons of valuable thoughts and ideas. One of the things she mentioned that I thought was brilliant was to make our white board schedule portable so we can bring it to the dropzone. Why didn't I think of this? Above is our end-of-week and weekend schedule with the dz part being portable. Sometimes it seems like Elijah doesn't pay much attention to these schedules, but if I ask him a specific question about our day he knows the answer without having to look. He obviously relies on them for structure and predictability.

Last week I contacted Fraser (special needs organization) and Autism Society of MN and got E's name on their lists so we can get him evaluated for services. I'd love for him to be able to receive social skills help and emotional/behavioral help. I'm excited to see what comes from that. Depending on how they pan out, Courage Kenny is next on my list. I've been reading parts of E's neuropsych report every day to try to absorb the info from that. I'm feeling a bit desperate to get a few of our recent struggles under control before second grade starts.

Today was a mostly GREAT day, so I'd like to copy and paste paste paste.

This weekend: work, dropzone, church and family time. I'm so grateful for my amazing boys and for YOU for reading and caring about us. Have a wonderful weekend!