Respite Camp for AJ

Last month AJ had an incredible opportunity to attend camp through WisconSibs, which is a great organization that provides resources, events and connecting activities for people who have siblings with disabilities. This group has offerings for kids age 6 and up, including for adult siblings whether things like seminars on guardianship or other topics that often are relevant for siblings. AJ has done a handful of things through the group, mostly participating in their Sibs are my Peeps contest each spring and a couple hour SibShop at the NEW Zoo this spring.

AJ in front of his yurt. So cool!

This camp was an extremely cool summer camp full of typical camp activities, plus some extra fun and just a bit of discussion about their siblings. We dropped him off Thursday and picked him up Sunday. In between, he got to be a regular kid and get a break from Teddy. Although he loves Teddy dearly, sometimes Teddy is a lot to handle. (As I type this, Teddy has been “talking” in loud screeches for the past 2 hours in the car.)

AJ got to hang out with other kids from around the state, sleeping in yurts after enjoying bonfires and s’mores every night. They did both zip lining and high ropes courses. They did a nature walk through mosquito-infested wetlands to create ecosystem jars. They got to go swimming in Lake Michigan.

AJ had such a great time and can’t wait to do camp again next year! It was such a great experience, and we’re grateful he had the chance to go!

Relaxing Respite

Last week we had the opportunity to spend a few quality days with AJ. Between assistance from grandparents and our "adopted daughter" Sigrid, we were able to arrange coverage for Teddy. We headed north to the upper peninsula of Michigan to one of our favorite places: Pictured Rocks National Lakeshore. 

We've visited Pictured Rocks nearly every year since 2009. We've done the boat cruise to see the beautiful lakeshore from Lake Superior. We've hiked to a frozen waterfall in winter. We've camped in the traditional campgrounds. We've hiked 45 miles from one end of the National Lakeshore to the other end. It's absolutely beautiful and yet unpredictable. The weather can be amazing or it can be brutal. The water is usually freezing, but occasionally it's warm enough to truly enjoy. The stable flies can be merciless. The waves can be non-existent or they can be 10 feet high. 

Despite it's unpredictability, Pictured Rocks has grown increasingly popular in the past 5 to 10 years. We first discovered it when it was relatively peaceful, and now visitation has increased tremendously similar to other national park sites. In our words, it's gotten far more "people-ly," but we're still able to find our peace there.

This was our third year hiking and backcountry camping. That means we take everything we need for a couple days in our backpacks. We have done with when AJ was 6, 7 and now 9. He's quite the trooper for the 3.5-mile hike in to camp, especially with the promise of swimming and playing there. This year was the best yet, likely due to his age.

Still smiling on the hike out, although AJ was a bit weary.

We had perfect weather, water and bugs. We planned to bring in our stand-up paddleboard. All told, that meant an extra 12 miles of hiking (6 of those carrying the paddleboard). Although I can't say we'll do it every time, it was absolutely worth it. We were able to explore further along the coastline safely (given that AJ and I aren't strong enough swimmers otherwise). I am not built for cold water, so the paddleboard allowed her to play in the water with the boys. We were able to see the shipwreck by finding it with paddleboard. 

This was the cave that "burped" and tried to eat them when the waves kicked up.

As AJ collapsed into the water for the first time, he exclaimed, "This is everything I could dream of!" We tend to agree. 

As much as we wish we could bring Teddy to our favorite camping place again, it's just not feasible with his walking ability and the trails. We spent time contemplating how we might be able to get him in for a day trip. Honestly our best bet is to rend a pontoon boat, but then we need someone who's a boater to chauffer us. Any scenario that involves us hiking in is going to result in being exhausted chasing Teddy while there after the way in and way out.

And the reality is that both AJ and us need time away from Teddy. We love Teddy dearly, but it's a lot to be his brother and parents. It's a lot of patience. It's a lot of diligence. It's a lot of refereeing. It's a lot of pushing and shoving. It's a lot of guessing games. There's reasons that AJ likes the move Wonder. It reminds him of our life, probably including the line about life revolving around "the son." 

These few days allow us to enjoy each other. We can all have a bit of space, a bit of personal time and plenty of nature. We had a fantastic time and are already looking forward to next year.

Happy hikers enjoying Grand Portal.

Happy Birthday to the Best Big Brother

Nine years ago today, our dreams of becoming parents came true when AJ was born. With a little help from a lot of people, we celebrated his birthday quarantine style so well that he declared it to be the "best birthday ever!" I had reached out on Facebook to ask for a little extra love on his birthday, specifically cards to brighten his days. I intentionally said he didn't need presents but said that if folks wanted to tuck a dollar or two in the card that he's saving money for charity. The kindness and generosity of our family and friends means that he now has right around $100 to donate to the charities on his list. 

Happy 9th birthday AJ!

We still are quite careful regarding COVID and precautions, so that meant a birthday party with our two childcare providers replaced the usual gathering with all our family. Teddy was ecstatic to have both babysitters here at the same time and couldn't decide who he wanted to boss around with so many different options. We still did very small family celebrations, which spread the celebrations out to celebrate with each set of grandparents, and we have a virtual party planned to spend time with his cousins. There were a handful of masked visits, including much love from our myTEAM Triumph family. Masks might hide the smiles, but trust me, they were there for every visit. 

MTT friends surprised us with a cul de sac distanced birthday celebration. 

Today was an incredible day celebrating an incredible boy. We're so blessed to have AJ as our son and Teddy's big brother, and we're so grateful to all who made this day special for him. 

Guest Blog Post by AJ

 AJ wanted to do a guest blog post, sharing how Teddy hurt his ear from AJ's perspective:

We were setting up the Yi camera, and I checked on Teddy. He was clanking on a piece of wood, and 5 minutes later *CRASH* I was worried on what he did now, and the squatty potty was tipped over. The wood was on the window cell, and it was in his ear. He fighted his way out, and he cut his ear. It was bleeding, and we cleaned him up and saw cartilage, which gave me the creeps and got me nervous.

That sent us to the hospital, and he played on the family tablet on the way there. We got there. They set up my room, and he got a spring light toy, then got numbing medicine (which did not help much). Then they gave him the drowsy medicine, and he needed a headlock, and he hated when the curved needle went in. I built a Minecraft jail and palace and a get away home. He had to get 4 stitches, and then on the way back to the land, we cleaned up and went home and then finished the rest of the day. Then dad slept with him for bed.

Neither of My Children Are Typical

We've suspected since Teddy was 5 months old, that there was something different about him. His genetic diagnosis with CDG-PIGN in 2015 confirmed what we already knew ... that Teddy wasn't a typical child. 

As the years have progressed, though, it's become crystal clear that neither of our children are typical. Although they both share many of the traits of other children, such as a desire to play, laugh and have fun, there's defining qualities that set each apart from their peers. For Teddy, his genetic diagnosis is the defining difference. For AJ, I'm honestly not sure if it's who he is or who he became because Teddy is his brother. I think AJ is inherently a sweet, considerate and sensitive child. But I know that living with Teddy has also shaped him already into an even more compassionate, thoughtful person. 

All siblings get on each others' nerves and fight in their own ways, and our boys are no different. Teddy wakes up some mornings determined to live up to his birthday shirt of shenanigator (one who instigates shenanigans) with AJ as his primary target. There may be headbutts and tears on those days. Yet, when AJ and I spent some time reflecting about what we're most grateful for during the pandemic, the thing he was most grateful for was having Teddy as a playmate and brother.

AJ recently decided he was going to read this entire blog, which has prompted some questions because I certainly didn't write this blog with children as the intended readers, much less AJ, at least not at this age. But he loves reading the stories of our life, so I've encouraged him to pose the tough questions to me instead of the childcare provider at least. One of those questions centered around diagnosis day, when I shared the tremendous guilt we felt that AJ would never have a typical brother. He couldn't understand why that was a bad thing, so I asked if there weren't times that he maybe wished his brother didn't have CDG? He answered immediately, no, that Teddy is the best brother in the world and that he loves Teddy. 

See, that's one of the amazing thing about AJ. Although there's things about Teddy he wishes were different, such as Teddy giving him some personal space, not being aggressive toward him or the ability for Teddy to talk, he loves Teddy as he is. 

Then there's mornings like this morning that make up for so many of the fights. I was trying to get through a few work e-mails since both boys remarkably slept past 6:30 a.m. I heard Teddy stirring in his room, but I continued working since he wasn't unhappy. I heard AJ wake up, but he never came in to say good morning, so I continued working while keeping an ear on Teddy's room. When I wrapped up a few of the e-mails, I headed to Teddy's room and had already started to open the door when I saw this note:

Handwriting is still a work in progress. 

As I cracked open the door, I saw a poopy diaper already bagged up on the bed, ready for the garbage can. AJ had assisted Teddy in putting on his shorts (although they still ended up with both legs through a single hole). He had plans to get Teddy ready for the day, read him stories and let me "sleep in" until 7:45. Seriously, what other kid does that? What other kid is willing to change his 7-year-old brother's poopy diaper? Without being asked? 

So, my realization today was that neither of my boys are typical. And I'm all the more blessed because of that. 

Sidenote: When Teddy was diagnosed with CDG-PIGN, I quickly realized the word normal could be hurtful. If I compared Teddy to other children and used the word normal to describe other children, that implied that Teddy abnormal and sounded like he was inferior to the others. So I settled on the word typical to describe other children who didn't have a genetic disorder like Teddy.  

The Best Big Brother Ever

God knew that Teddy couldn't have just any sibling.

He knew that Teddy needed a brother, someone to wrestle with him, fart on his belly and model the way to do things. He knew Teddy's brother needed to have (or develop) incredible patience to handle the challenges encountered daily with Teddy. He knew Teddy needed a brother with attention to detail, someone who would notice when Teddy wanted a drink simply because Teddy stared at a cup on the table. He knew Teddy needed a brother with tolerance, one who could handle when Teddy destroyed his creations, ate his food or invaded personal space that doesn't exist in Teddy's mind. He knew Teddy needed a brother who would be curious, interested in learning more about how to help Teddy and understanding Teddy's diagnosis. He knew Teddy need a brother with acceptance, one who would love his brother unconditionally, even if Teddy occasionally drools on him. (Eww, gross!) He knew Teddy needed a brother who would be selfless, who would often inadvertently not be the center of attention when Teddy's health or challenges forced us to focus primarily on Teddy. He knew Teddy needed a brother with a kind heart, one ready to help his brother with tasks of daily life and special projects to brighten his days.

That's why God gave us AJ as our first child, Teddy's older brother.

We could not be more proud of AJ. He is everything that Teddy needs, except for the rare days that he still head butts Teddy because, well, he's human. There have been a couple things in the past few weeks that show perfectly what a tremendous brother AJ is.

When we went to the MTT track meet a few weeks ago, AJ spent the drive there inventing a camera that would enable Teddy to take pictures. It was essentially the camera app of a tablet except on a camera with a touch screen that you tap to take photos. He had other elements to his design, but I'd hate to ruin his patent before he gets that all finished. AJ was so excited about making a camera that was adapted for Teddy and "other people with diagnoses" to use to take pictures. He was even plotting out who he could consult to help make a prototype of this design, and my brother better watch out the next time AJ sees him.

Then there was World CDG Awareness Day last week. AJ proudly wore his shirt and spent the day quizzing us up with 101 questions about CDGs. He was rather disappointed that none of his classmates asked him about his shirt and that he only got to give a card explaining it to his teacher. He then asked me to ask his teacher if I could come explain CDGs to his class. Given that he's in kindergarten, I suggested a more general approach of how some people have different challenges, how people can communicate without speaking and how all kids want to play with others and have fun. So we're working on that for next week in his class because he wants to help others understand.

So proud. Such a horrible smile for pictures. 

And today he came to visit Teddy during the dreaded 24-hour EEG. Not only did he help me pack a few toys for Teddy, he brought a "treasure chest" that he created for Teddy from a cardboard box filled with more toys. He spent two hours playing with his brother, asking a bunch of questions about EEGs and making Teddy's evening better simply by being there.

Best brothers ever.

We're mighty lucky that God knew what Teddy ... and we ... needed.

"I Don't Think Teddy Will Ever Talk"

"I don't think Teddy will ever talk."

That sentence from AJ while I was doing dishes stopped me in my tracks. Fortunately, Dave was home as well to help steer the conversation. We've talked about Teddy needing more help and using his tablet to help him make choices, but this was the kick-in-the-gut conversation that AJ is understanding Teddy is significantly different than him.

The topic came up again today when AJ asked why Teddy doesn't have the Pizza Hut reading program. I explained that AJ didn't have that program either in 4K. AJ proceeded to say that he didn't think Teddy would have it next year. He followed up with saying that he thinks Teddy should be able to read words like "a" and "my" already.

I paused for a moment to gather my thoughts before explaining that even if Teddy could read those words, we wouldn't really know right now because we're still trying to find ways to understand Teddy better. I said that we know Teddy knows some words, like bus, because he looks for a bus whenever we say that word. I said, though, it's hard to know exactly what Teddy knows and understands. AJ's response to that was, "Right. Because you can't read his mind."

I agreed and said that I wished that I could, but there's a lot of things we're learning to understand when Teddy tells us in his own way.

These conversations are tough. I struggle to find the right things to tell AJ to help him understand and make sense of Teddy's abilities despite his differences. I know part of the reason I struggle is because I still long to hear the words "I love you" come from Teddy's mouth ... and I don't know that they ever will.

He says that phrase when he climbs into my lap at meals (and drives me nuts in the process). He says that phrase when he flaps his arms and jumps when he sees me walk into the house. He says that phrase when he snuggles into me. He says that when he covers my head with a blanket and then peeks his head underneath by mine. He says that phrase with his joyful smile.

But that doesn't stop me from wanting the words.

And that's just the wistful part of me. The practical part of me wants to know when Teddy's hurt or ill, what he wants, what he knows and what's going on in that mind of his. As I told AJ, Teddy knows a lot more than we realize.

These will be the first of many conversations with AJ as he develops a full understanding of Teddy and comes to terms with it. He's beyond thinking that Teddy doesn't do things because he's a baby and will continue to question why Teddy doesn't do things that other children his age do.

On the bright side, despite these tough conversations, AJ is already an empathetic child who is extremely helpful. (He's the only person who's ever flossed Teddy's teeth. Not even the dentist attempts that.) He will be already is a better person for having Teddy as his brother.

And lest this post seem disheartening, I need to end it by saying that my phrase this week has been abundantly blessed. Dave has been gone all week for work, and my mom, who often helps with the boys when we need help, is in Hawaii. Our sitter offered to help with bedtime all but one night. My aunt came up from Milwaukee for a visit, took AJ to swim class and spent one night with us. Dave's folks came down to stay with AJ while I took Teddy to swim class (and originally planned to come both nights for swim class). My friends came for dinner one night, and one brought AJ a coveted Hatchimal Collectible. Our village is here to help us raise our children. We are indeed abundantly blessed.

A Morning in My Life

As I was running errands with Teddy this morning, it occurred to me that we probably provide some entertainment for others when we're out and about. I thought I'd share our morning, so you can be entertained as well.

5:30 a.m. Dave wakes me up before he leaves for work, but he warns me I might want to stay under the blankets longer. The house was 54 degrees when he woke up for work, instead of the usual 67. It turns out that when Teddy hauled in the step ladder from the garage yesterday and was standing on top of it by the thermostat that he turned on the AC, so we had no heat running all afternoon or night.

He apparently knew he was turning off the heat, hence his coat.

6:00 a..m. I finish my 15 minutes of yoga and 7-minute workout as AJ comes downstairs. When he learns that he has a play date tomorrow morning at his friend's house, he suggests I invite Teddy's friend Max to our house at the same time. Hmm, good idea.

6:45 a.m. AJ feeds the rest of his French toast to Teddy, flying each bite into Teddy's mouth. I don't complain that someone other than me is feeding Teddy. (Not complaining about dinner either because Dave usually takes the lead on wrestling Teddy, who no longer wants to sit at the table most of the time.)

7:00 a.m. I text Max's mom to see if tomorrow works for a play date. It sounds like a possibility. 

7:15 a.m. AJ gets on the bus. Teddy can't wait for nicer weather when he can go play outside every morning until AJ gets on the bus because Teddy always stares out the window watching everyone else play. (I'm just not up to getting him all bundled up in snowpants and boots when both of us are still in our pajamas in winter.)

8:00 a.m. We've played magnets along with opening the refrigerator about 20 times. I don't find that particularly fun, but Teddy most certainly does.

8:30 a.m. We head up to Appleton for grocery shopping.

9:00 a.m. I struggle to get Teddy's feet into the holes in the shopping card. I blatantly disregard the weight limit and ponder if I'll need to take off his shoes to get him out.

9:15 a.m. A couple chuckles at Teddy holding a giant bag of pretzels while I try to store everything possible under the cart where he can't reach it.

9:30 a.m. Moment of truth. Groceries are out of the cart, and now it's time to remove Teddy. I size up the situation and decide I need more leverage than I can get from standing on the group trying to maneuver Teddy above most of my body. I put one foot on the cart corral and the other on the bottom of the shopping cart to lift Teddy out. Both his feet wiggle out fairly easily, and I'm quite proud of myself until I realize what that must have looked like to everyone else.

9:45 a.m. We're at the next store, and I just can't muster the effort to get Teddy into and out of another shopping cart. So I load Teddy on my back using a soft-sided carrier. Then I proceed to ask the first person I see to help me adjust the back of the carrier. I walk away telling Teddy that I have no pride left.

9:50 a.m. Teddy is excited to be in the carrier. I know this because he is bouncing up and down. That does not make it easy for me to walk with 46 lbs. of flailing on my back. At least he's happy.

10:00 a.m. I regret not grabbing a cart because I was only picking up one thing. I miraculously manage to carry two packages of chicken, two bags of salad and a giant container of olives in my arms with Teddy on my back.

Smiles, sunshine and sweat. He's heavy. ;-)

10:15 a.m. I call for the fourth time on a records request to get EEG discs to the National Institutes of Health. I discover that I need to call yet another place for one of the EEGs. I'm not happy with this since I've been trying to get these records since February 1.

10:45 a.m. We arrive at the library to pick up my books that are on hold. I always request books to be put on hold, so I can walk in, grab them and walk out. I know it's more work for them, but it makes life much easier than trying to find a particular book while wrangling Teddy. I put the carrier on but decide to be brave and let Teddy walk. He's much better than last time and doesn't try escaping multiple times. Success!

10:50 a.m. I hear back that my original EEG request is being processed and should arrive by the middle of next week. I feel much better than I got such a quick, positive response.

11:00 a.m. I unload groceries while Teddy climbs into the trunk. Then I put away the groceries while Teddy plays in the car and turns the key partially. Thankfully, he honked the horn loudly to let me know he was being a stinker, so I got the keys away from him.

11:10 a.m. I make Teddy lunch while calling on the other EEG records.

11:15 a.m. Teddy eats his lunch, partially while sitting and partially while wandering through the kitchen.

11:30 a.m. I change Teddy and make sure he's ready for school with his backpack, talker and coat. He puts on my vest and then makes me wear my vest. He's getting so good with zippers.

11:40 a.m. Teddy's van arrives to take him to school. He's so excited he jumps up when I open the van door. (He is just starting to be able to jump, which is so fun!) I buckle him in and wish the driver a good day.

11:41 a.m. Freedom! I have no children until just after 3 p.m.

Pride and Prejudice

This isn't about the classic novel. It's about AJ reading 1,000 books. You see the connection right away, too, right?

When AJ's teacher sent a message to all the parents in his class that AJ was the first student to read 1,000 books this year, I was so proud of him. I immediately began sharing the picture to Facebook with a caption about how proud I was that AJ was the first child to read 1,000 books this year.

I'm hoping AJ learns to actually read sooner than later, so he can help Teddy read to 1,00 books.

And then I stopped short. Because I realized Teddy will not be the first child to read 1,000 books in his 4K class. I realized that if Teddy ever learns to read, even a few sight words, we'll be so much more proud of him than we'll ever be of AJ for reaching this 1,000-book milestone. I realized that the lessons we've learned with Teddy about it being fine to reach milestones on his terms should apply to AJ.

But it's hard.

I'm still incredibly proud of AJ and happy to see how proud he is of himself. He has two parents who were academic overachievers and still are overachievers. We were never content with any grades less than As. We even discussed before having children how we thought it would be a challenge for us if we had children who weren't academically gifted because we wouldn't understand what that was like ... or if we had children who didn't apply themselves academically.

And then we had Teddy, who really creates his own category. That probably puts even more pressure on AJ, not that we would ever intentionally voice it to AJ. He carries the brunt of so many hopes and dreams that we had for our children before they were born. We want the best for both our children, but the reality of our world is that the best looks different for each of our sons.

Then again, the best looks different for each person in this world. My best is not your best. AJ's best is not Teddy's best. And that's OK.

"Good job Teddy!"

As I was upstairs this evening finishing laundry and dishes, I heard AJ exclaim from downstairs, "Good job Teddy!" I immediately stopped what I was doing to listen to the exchange and heard AJ praise Teddy again.

This spontaneous praise, when only the two of them were in the room together, stopped me in my tracks. The thing is it's not unusual to hear AJ praise Teddy. It happens at least every couple days, if not every day. Or, AJ will try to encourage Teddy to do something new or different ... to teach him a new skill, as AJ would say.

These two are the best of buds. (Except when they're not.)

Lately I've been pondering how having Teddy as a brother molds AJ now and will impact AJ in the future. This is something that's always in the back of my mind, but Dave questioned me about it a few days ago and then I read an article on 8 ways children are affected by having a sibling with a disability. I know there will be challenges, frustrations and difficult conversations in the future.

But for now, I'll cherish the empathy and compassion I see developing in AJ. At a party today, a group of kids ran into a bedroom, shut and locked the door with Teddy on the outside. I called inside to AJ and asked him how he felt when earlier the girls had excluded him by saying "No boys allowed" and how he thought Teddy might feel being left out of the fun. Almost instantly, with just that prompt, he unlocked the door and encouraged Teddy to come inside.

When he told me his classmate didn't have crayons on the bus this past Friday, he also told me that he shared his crayons with her. (Good thing he took that larger pack rather than the 4-pack I had suggested. Oh yeah, that might have led to one of the meltdown I mentioned earlier.) He also gave that girl the picture he colored because she really liked it.

I'm certainly not saying that you need to have a sibling or family member with a disability to become a compassionate, empathetic person. But, at least for AJ, I see that as one of the benefits of having Teddy as his brother. He's learning to be more compassionate, empathetic and inclusive at a much younger age than most.

When's the Last Time You Called Poison Control?

Based on the title of this post alone, you know it's going to be a good one, right?

Let me share a little bit about our day, which can mostly be captured with my Facebook posts. Here's the first one, shortly after my first failed attempt to put Teddy down for a nap:

Snowman fun after baking the pizza AJ made at school. Teddy is not in the picture because he insisted on heading to the neighbor's house repeatedly. It's not his fault. They invited him over. I mean, their garage door was open, so that's like an open invite to Teddy. 
 

AJ was waving the snowman's arm.

I swear that an open garage door, or better worse yet, an open door on a vehicle emits this strange frequency that only Teddy can here, summoning his presence. Once our neighbors left their vehicle hatch open for an extended period, presumably drying out something inside the vehicle. Let's just say we had to go inside because we couldn't keep Teddy in our yard. Today I chased him down at least three times as he headed to the neighbor's house. Had I let him be, I'm sure he would have been happily inside playing with their little girls' toys or trying to climb into their fishing boat.

Would it be rude of me to bake all our neighbors cookies and deliver them with a request to keep their garage doors and vehicle doors shut?

Fast forward about an hour later when Teddy should be tired from playing outside. Nap time, round two. He seems to be settling down after some of his usual thumps, so I decide to get a head start baking birthday treats for Dave (and eat lunch since it's 1:30 p.m.) Maybe he fell asleep, but wait, did I just hear him? Hmm, that's a lot of thumping, but he's not upset, so we'll finish up our baking (and LEGO time for AJ). Oops, he's crying. Better go rescue him.

30 minutes later came my next Facebook post:

Good news-Teddy used his fine motor skills to open a bottle with a twisting motion. 

Bad news-he did it when he was supposed to be napping.

Worse news-it was a bottle of Tylenol from the diaper bag hanging in his closet.

Best news-Poison Control says he'll be just fine, even if the bottle was full before he got it open. (And there's a chance he ate none. He won't tell me.)

Then he was playing in the toilet twice while I was on the phone with Poison Control. Sometimes I wish he wasn't developing all these skills ... eh, I just realize he use them more appropriately.

This is the second time I've had to call Poison Control. Fortunately both were relatively minor incidents with no significant risk of harm, so instead of panicking I simply felt guilty about being a bad parent as I made the call. For some reason, I'd much rather call his pediatrician's office than Poison Control, even though I know the nurse is going to tell me to call Poison Control.

Based on comments to my Facebook post, quite a few other parents make use of this valuable resource. (Seriously, I appreciate their knowledge, calm demeanor and let's not forget their non-judgemental responses.) And I had one other person who has children with the same type of diagnosis as Teddy share a picture of her son after he drank from the toilet, imitating their family dog.

Sure, I could have posted pictures of the cupcakes I baked and just our snowman, but that doesn't tell the rest of the story that happened during the making of those events. Sometimes, folks, we just need to keep it real.

We Have a Herd of Reindeer

Last month, I somehow managed to order two sets of rain boots from Amazon instead of one. Woops. Then, we magically had an Amazon order show up that I couldn't really remember ordering. (Dave said he was going to take advantage of that magic order by putting a new camera in the cart that magically orders itself.)

So imagine my panic when 10 inflatable bouncy reindeer arrive at my door, instead of a lone reindeer. I had ordered one reindeer for Teddy as a Christmas present ... not an entire herd! At least that's what I thought. As quickly as my children would allow, I was digging through my past orders on Amazon to make sure I hadn't somehow managed to order 10 instead of 1 ... sneaky extra 0.

Thankfully, I had ordered and paid for one. After contacting the company that we received one box of ungulates instead of one, we were told the herd was ours. (OK, they actually said to donate them to a charity of our choice, which is where most of them will go.)

I think Teddy will enjoy his reindeer, and it's a perfect way for him to work his core muscles, which still need a lot of work. Sitting on this forces him to balance, much like many of the exercises he doesn't enjoy in PT. In fact, I'm thinking one of our herd will be donated to the place where he goes for therapy, so other children can have more fun than doing sit-ups.

Aside from horns to hold onto, this also attracts the AJ brother to play with him. These are not intended for multiple riders, but I do know from personal experience with a green cow version that my two children will cram on one critter. It's sort of like bull riding rodeo-style. Ain't nobody going to last 8 seconds.

Biking Boy

Teddy always enjoys climbing on (and then off ... and then on ... and then off ...) every bike we own, even the ones that are obviously too big for him. He scoots around using his feet and thinks he's pretty cool. He's also been practicing biking occasionally at physical therapy, and we've had plans to adapt a tricycle at home for him for months. (The idea is to enlarge the peddles, and secure his feet into the peddles.) The farthest we've gotten is his grandpa cut out the foot peddles for us a few weeks ago.

And then this happened today at physical therapy:

The best response was Dave's when he saw the video:

"My lil HERO!!!! I'm not sure children are suppose to inspire their parents as much as he does for me!!! Guess I got to get those foot pads on our trike!!"

First First Day of School

Yesterday was the first day of school for both my boys: 4k for AJ and early childhood for Teddy. Someone asked me if it felt like the years flew by that AJ was already heading to school. I joked I'd been waiting for this day for 5 years (even though AJ isn't even 5 yet) since it was really difficult for me to leave work when he was born. And then I said the emotions about AJ going to school were really overshadowed by Teddy because Teddy alters our perspective on everything.

If we didn't have Teddy, I'm sure AJ's first day of school would have been more emotional for us. Instead, nearly all our nerves were wrapped into worrying about Teddy. We're excited for AJ, but it's easy because he's thrilled to go to school and has had so much fun the past two days. He comes home ready to show off anything he has, even a piece of paper in his folder that I need to complete, and rattles off everything he can remember about his day (which still doesn't include the names of anyone from his classroom, even his teacher).

It's harder with Teddy because at best I'll get a note or a quick statement of how his day went. He can't tell me anything about what he did, if he got hurt (like AJ who had someone step on his foot today) and who his friends are.

All smiles before school!

But, I know in my heart that he will love school. He will learn amazing new things. He will win over his teachers and therapy team with his smile, charm and personality. He will make new friends and learn to play with them in at least a somewhat socially acceptable manner. His smile as I picked him up yesterday told me that he had fun. (It did help to hear from his teacher, though, that he had a good day.)

I love how much these two love each other!

And another positive note: given their track record in day care settings, I'm quite proud to report that neither one has been kicked out of school yet. (I'm serious ... they've both been booted from day care ... and almost got booted together for a second time before we pulled them.)

Together Again

It's a beautiful day in the Blondheim household. My boys were reunited this evening after Dave being gone nearly two weeks for a work vacation, as AJ called it. All of us survived, but we were equally happy to see each other.

AJ was helping Teddy look at the camera.

Of course, we had a party for Papa coming home, complete with balloons, signs, streamers, party hats and presents. AJ was so excited to find this gigantic party hat at the Dollar Tree because Dave never wears party hats because "they are too small" for his head. AJ found one that wasn't too small for his head. (Me, I just laughed and put it in the cart. Mom has to have some fun when Dad is roaming through Rome.)

How to Create an Integrated Tumbling Class ... as Described by a 4-Year-Old

AJ is taking a tumbling/gymnastics class this summer through the rec department in Oshkosh. It's one of those things where he cries and throws a fit that he doesn't want to go and then has a splendid time. (I signed him up solely for the socialization to help him develop those skills.)

After his first class, he asked about Teddy taking gymnastics. I explained that Teddy is too young this year because you have to be at least 3 to take this class. I said Teddy would be old enough next year. AJ informed me there were some things they did in class that Teddy already knows how to do, like bear crawling. AJ said there were some things that Teddy would need help with, like the activities that involve jumping. "It's OK, Mama. I will tell the teacher, 'You can help Teddy with this.'"

There you have how to integrate a child with different abilities into a gymnastics class through the rec department. Do what you can how you can and ask for help when you need it. That's truly how simple it can be for a child like Teddy. I hope the Oshkosh rec department feels the same way next summer. If not, I guess I'll just have AJ explain it to them. (Because, by golly, Teddy sees all those mats and wants to join the fun!)

Things AJ Knows

As Teddy's only brother, AJ knows a lot of things. (He doesn't know humility yet, so he'd be among the first to tell you he knows a lot.)

AJ knows how to untie shoelaces and undo velcro straps. He hasn't learned this from his own shoes. (He prefers to cram his feet in them without ever undoing the velcro straps.) He knows this because he helps me take off Teddy's braces and is now to the point where he can do it by himself.

AJ knows that Teddy is thankful for spending his days with Miss Katelyn, their wonderful sitter who happens to be a nursing student. When I asked AJ how he knew this, AJ replied that Teddy cries when Miss Katelyn leaves.

AJ knows that Teddy likes to mountain climb. When Dave asked why Teddy was trying to climb over him the other night, AJ said, "Papa, Teddy likes to mountain climb. There are no mountains, so he's pretending you are a mountain."

AJ knows that when he has a fever of unknown origin, Teddy automatically gets Tylenol. "Silly Papa. I only get medicine before bedtime. Teddy gets it during the day." (If we don't know what causes a fever in AJ, we tend to medicate Teddy as a preventive measure to minimize the possibility of a seizure.)

AJ knows that Teddy likes to reach into containers and share other people's food. AJ had to explain this fact of life to his cousin this weekend, who understandably was a bit irritated with Teddy's thievery.

AJ knows that Teddy likes to take the easy way out and eat out of people's hands rather than pick up food, if given the chance. (As he was explaining Teddy's food sharing to his cousin, AJ picked up a piece that fell and automatically let Teddy eat it from his hand.)

AJ knows that Teddy doesn't know how to floss his teeth yet, so AJ helps him out sometimes. Trust me, AJ's the only one brave enough to try flossing Teddy's teeth. I haven't seen a dentist attempt that, and they even get paid to do that!

AJ knows the way to Children's Hospital in Neenah, all of Teddy's therapists, the word therapy and so much more. He knows to hold the elevator doors for us while Teddy slowly walks onto the elevator, and he holds the doors for other people as well.

AJ knows an awful lot. I hope he knows how much Teddy adores him.

Clifford and Curious George

On any given week, we head about 25 minutes away for three different therapy session: OT, PT and speech. Sometimes it's three separate days and trips. Other times we pull a doubleheader. Sometimes those go fine, and sometimes Teddy is ready to be done before we're halfway through.

Given how I never know how therapy will go, I appreciate any little thing that makes the appointments smoother. Last week Clifford was at the clinic, as part of a sponsorship with the local minor league baseball team and PBS. AJ was beyond excited to see Clifford, and I was pleasantly surprised by how tolerant Teddy was of the big red dog. Given his distaste for Santa and the Easter Bunny, I didn't think he'd have much to do with him. After his initial skepticism, Teddy was cool with Clifford and even managed a photo next to him. AJ thought it was so cool that we rode the elevator up with Clifford and got to be the last kiddos to say goodbye to him and get all sorts of stickers, books and special attention.

AJ, Teddy & Miss Pam with Clifford!

This past week, Curious George made an appearance at the clinic. Teddy immediately was intrigued (and not terrified). He smiled and engaged with Curious George enough to give him a Teddy version of a high five, which then led to Teddy grabbing his fuzzy paw. We didn't have much time to hang out with him before we headed back to therapy. Teddy managed to do some activities really well, such as practicing eating with a spoon, but then he hit the point where he was just done ... even though we weren't done.

That's when there was a knock on the door, and someone asked if Curious George could come in for a visit. Teddy went from crabby to smiling in an instant. He again gave Curious George a high five, grabbed his monkey paw and even did OK with a small monkey hug. Teddy broke down when I made the mistake of trying to set him on Curious George's lap for a picture, but he calmed back down when he was not being handed to a monkey. (Sheesh, why would that freak anyone out?) The mischievous monkey left my boys a wooden puzzle as a parting gift and went on his merry way. We managed to finish a few more activities after that welcome distraction.

"I like his fuzzy hand ... Can I eat it?"

I'm so thankful for these type of opportunities. They become the highlight of the day for AJ, break up the routine for Teddy and make my days just a bit easier ... and more fun.

Just monkeying around with the boys!

Happy Belated Mother's Day!

Happy Mother's Day to all the mothers, including those who are maternal figures and those who yearn to be mothers. I hope your day was filled with a bit of extra-special love.

My mother-in-law helped AJ make me a pretty special card. As much as I love the treats (trust me, "Mom" didn't stand a chance against this mom), I was so impressed AJ did all the writing himself. He knows all his letters, but the patience to follow Grandma's instructions for that long is quite the feat. It helped that he had his two favorite cousins doing the same project for their mom, but still, I give him credit. And I appreciate the thoughtfulness of my mother-in-law.

The way to a mom's heart is with candy, especially if she doesn't have to share! ;-)

And in case you need a translation: Mom, you are the best mom in the Milky Way. You deserve a Payday. Relax and Take 5. You give us Mounds of love. We love you to Reese's Pieces. Love, your Sugar Babies AJ, Teddy & Papa

Legoland and More!

We headed down near Chicago this past weekend for some fun family adventures. Our first stop was the Jelly Belly factory for a warehouse tour and free samples. Jelly beans are not my favorite candy (by a long shot), but I can't get over the buttered popcorn and pancakes with maple syrup ones. The taste is spot on, which is crazy weird.

The boys enjoyed their fill of pool time both Saturday evening and Sunday morning before we went to our main adventure: Legoland. Let's just say I had two very excited boys (Dave and AJ) with this adventure, and that Teddy was a good sport. There was quite a variety of things for them to do, including a two small rides, lots of areas to build, neat models to enjoy (like a jungle room the boys thought was fun) and a large play area. Teddy's favorite were the giant blocks to build, crawl on top of and attempt to eat the moment I looked away. AJ loved most every thing, except any waiting and the fact he couldn't play with the pre-built fire trucks made of Legos that were glued down to prevent kiddos from wandering off with them.

Figures Teddy would go for the hook. That child has no fear.

The absolute best part of Legoland, for Dave and I, was meeting up with another family from the Chicago area with a child who shares the same diagnosis as Teddy. That was the reason for our trip, and Legoland was just the perfect meeting place. It was absolutely awesome to meet Sammie, her brothers and her parents. There was something so special about seeing these two children with the same diagnosis meet each other for the first time. She is the friendliest little girl who immediately wanted to show Teddy everything (and take his hand and lead him everywhere).

Sammie is almost 9, so it's incredible to see all the skills she's mastered, along with her similarities to Teddy. We recognize each child is unique, regardless of any diagnosis, but meeting Sammie gives us so much hope for what Teddy may be able to achieve. It was fun to see how Sammie and her brothers interact. It was also great to spend a couple hours chatting with her parents, learning when she hit milestones and more about their lives. And Dave discovered her dad fly fishes, so all was well in the world.

Sammie and Teddy, two very special kiddos, together!

Of course, we couldn't part Legoland without a Lego set or two. AJ picked an Angry Birds pirate ship, which he couldn't wait to open. He spent a good hour or more in the car entertained by playing with just the box. We also checked out a second Lego store, where David got his pirate chess set. AJ had to wait to build until we got home Monday afternoon, but the wait was worth it!

This boy is obsessed with his Legos!

We managed another round of swimming Sunday evening and again Monday morning before we headed to Milwaukee. We made a quick stop at the Mars Cheese Castle, which is filled with every edible Wisconsin souvenir you could imagine, along with plenty of non-edible ones. We met my aunt in Milwaukee and spent a couple hours at the Milwaukee zoo. The boys are a bit young to fully appreciate it, but we all had a good time checking out the animals. I think the elephants impressed AJ the most, although he wasn't a fan of the smells of the zoo animals. Teddy likes to watch the animals when he's able to notice them.

Teddy loves carousel rides!

The highlight of the zoo for the boys, though, was either the playground or the carousel. Teddy absolutely loved the carousel ride, as did AJ. Teddy had a grin the entire time and did a nice job of holding onto his pole. And the weather was finally nice Monday, so it was a perfect day for the zoo, after two days of drizzle and rain.

Teddy still is Teddy. You have to taste test everything.