Sunday, September 17, 2017

Through the Eyes of Other Children

In the last couple days, the neighborhood kids discovered that we have the "coolest basement ever!" That's their description, not mine. This means that we've had the neighborhood children constantly in our house or backyard or all the children playing in the cul de sac.

That also means that today alone I had conversations with two different children regarding Teddy. The 9-year-old boy asked me if Teddy was learning to talk yet. My response was he didn't have words yet, but that he has his own ways to let us know what he wants. I gave the example of Teddy coming by us meaning he wants to play with us and be included ... and then the conversation ended as I chased Teddy in the opposite direction.

Then the 6-year-old girl was swinging on our tire swing with Teddy. She told me she has a lazy boy in her class who's just like Teddy. I asked if that boy talked, and she said he didn't talk at all. She said she didn't know why he didn't talk. I explained that some things were easy for some people and hard for other people. I said we're all good at different things and said Teddy's really good at climbing.

It's interesting to hear their perceptions and their questions, and I try my best to answer honestly but positively because Teddy does have so many strengths. And I know adults have the same questions ... two of our adult neighbors have asked in the last month or so if Teddy will ever learn to talk. My response the first time was, "That's hard to say ..." and followed that up with a more detailed explanation that some of the children with his diagnosis use communication devices, a few words and some signs.

The reality is it is hard to say because I believe Teddy will never have the full range of communication that I would love for him to have. As a communication major, newspaper editor and someone who finds great comfort and clarity in writing, I have a child who fits the label of non-verbal currently. I have no doubt he will continue to find ways to express himself, but I'll never know all that roams through that mind of his. He's 4 ... and I've never heard Teddy speak the words "I love you." Don't get me wrong, I've seen Teddy say I love you. He says it with his smile, the way he lights up when there's that connection and the (often painful) dive into you. But part of me still wants to hear those words.

And as much as I want to hear those words, I want to be able to understand him. I want to know what he knows. I want him to have a voice to express himself.

Until then, I'll do my best to interpret and speak for Teddy. And AJ will continue to speak for Teddy using his "Teddy voice."

The footnote I have to add, as I sit here in tears, is remembering what happened when Teddy and I were in the neighbor's driveway as the kids played together in the cul de sac. The little girl who turns 5 next week awkwardly was trying to ride our Ziggle while pulling a tricycle behind her. I chuckled at the sight, and her dad asked what she was doing. Her response, "I'm bringing Teddy his tricycle." Although the children often get caught up in their play and forget to wait, include or allow Teddy to play with them, she very intentionally dragged a tricycle all the way over to include Teddy. 

Thursday, September 14, 2017

Runs, Parks and Tired Children

Teddy's spent more time running with me in the past couple weeks than he probably had the past couple years (at least outside of myTEAM Triumph training runs and events). I've realized that when I only have Teddy that we can sneak in quick runs. Well, not necessarily quick but shorter ones, around 3 miles or so. We've been making the most of this time before school rather than simply counting down the minutes until the bus arrives (me) or destroying everything in sight (Teddy). On a related note, guess which 4-year-old is tall enough to reach our microwave ... that's up on the shelf above our counter.

This morning we headed out for a run at Menominee Park. It was a gorgeous, foggy morning to run. We cut the route a bit shorter because the peninsula had a bus full of children on it, so we opted to skip it this time. Teddy threw his partially eaten apple on the ground, which I then stepped on and left in the parking lot where it was smashed. We saw plenty of geese, ducks and people walking dogs. Some random guy on a his bicycle told me I was doing great after passing me (and Teddy stopped complaining because he had a bicycle to watch).

He was pretty excited, despite having the park to himself at first.

Our run ended at the playground, where Teddy had a blast wandering around checking out things at his pace. It amazes me how much he can explore and do that he couldn't a year ago.

This is how Teddy tried to climb up to the slide. Perfectly safe.

After some fun in the park, we headed home where he refused to nap (yet again) and was tired and crabby until I took him outside. He took off running toward the bus when he saw it coming down the road because he was so excited to go to school. (I know that feeling. I'm really excited for him, too.)

And why tired children, not child? Oh, that would be because AJ was up at 4:03 a.m. (I checked my watch.) He was too excited to finish building his LEGO set he got yesterday as an early birthday present from his running buddy. He managed to wait until 5 a.m. before coming back to tell me that he really couldn't fall asleep ... after thumping around in the bathroom, playing and getting dressed.

Friday, September 8, 2017

First Day of 4K

Tuesday was Teddy's first day in 4K. He's in the Intentional 4K class, which means he's with 5 other children with significant needs. His class is right across the hall from a traditional 4K class, so Teddy and his classmates will be integrated as appropriate into the traditional classroom. Teddy loved his meet and greet with his teacher and speech therapist, who happens to be Teddy's first male teacher/therapist. (His PT and OT haven't been assigned yet.) He was extremely eager to go explore his school on the first day of school, willingly taking his teacher's hand and walking off to see what fun he could find.

Hey, Mom, there's people over there!

It makes it easier for me that he's so excited for school. I told his morning bus driver and aide that they'd be hard pressed to find someone more excited to see them than Teddy will be every day because they drive the bus, which he loves. I think he's already won over both sets of bus drivers and aides ... and hasn't had the screaming episodes (yet) that happened last year.

This couldn't have happened  last year. He's made so much progress!
He's had a great first week, despite being tired each morning and exhausted most evenings. Hopefully he'll figure out to either take a nap in the morning, which he did one day, or to enjoy sleeping in since his bus doesn't come until 11:40.

Look how fun it is inside there!
The only downside to Teddy's first day of school, aside from the bus fiascos, was that I learned that evening that someone made fun of Teddy. Now, I recognize all children will be picked on ... but that's still not fun as a parent. As a child with special needs, I know it will happen more often to Teddy than other children. The extremely positive aspect is that one of Teddy's friends (and my goddaughter) goes to the same school, and she stood up for Teddy when the other child made fun of him. That's not an easy thing for a 4th grader to do, especially when it was another friend of hers doing the teasing. I'm extremely proud of her, and I also love that she gave Teddy a hug on his first day of school.

Now, once our new sitter starts Monday, my anxiety levels should go back to normal ... as if I'm normal. 

Tuesday, August 29, 2017

He Has The Best Smile

Our boys start school next Tuesday. Yesterday, we finally got the postcards in the mail with the information from the bus company stating what time the bus will arrive in the morning. We even got 3 postcards ... per child ... with the same information just to make sure we knew when the bus was coming apparently.

Unfortunately, I was on the  phone with the bus company this morning explaining that neither child is attending the school where the bus planned to transport them. I confirmed that AJ was going to kindergarten at the school closest to our house and that Teddy was going to afternoon 4k (so a 7 a.m. pickup time would be an awfully long ride) across town. The lady said, "Well, he went to Traeger last year, didn't he?" I responded that he did. She then said she rode the bus home with him one afternoon and remembered him. She said, "He has the best smile!"

Even sideways, it's a pretty recognizable smile. :-)

That made me smile, despite the fact that I still have no idea when the buses will arrive to pick up or deliver my children. It's a good thing that Teddy's smile carries so much meaning that people remember it months later from a single encounter.

I kindly reminded her that Teddy requires a 5-point harness, unless the bus driver would like Teddy to assist with driving the bus. Then I asked if I could expect a return call to know pickup and return times for the updated bus routes. She said that yes, they'd try to get that to me by the end of the week.

Great. School starts Tuesday. Monday is a holiday. I'm good at being patient.

I guess I'll call again Thursday and see if the next person knows that Teddy has the best smile.

Sunday, August 27, 2017

A Few More Vacation Photos

As promised, here's a few more vacation pictures ...

Teddy absolutely loved exploring the lava caves at Crater of the Moon.

Hiking in the rain. Teddy ripped off our poncho ... and shredded it. I got wet. And I got to carry Teddy.

One of our best family photos of the vacation at Yellowstone Canyon.

Checking out the fumaroles. AJ loved all the geologic formations.

It's safe. Dave is holding Teddy in place with one hand.

AJ and I doing muscle poses to photo bomb Ted.

Best brothers ever (in Badlands National Park).

Wednesday, August 23, 2017

Back-to-School Stress

The morning radio show yesterday shared the top three stress points for parents regarding children heading back to school. They were, in no particular order, waking children up for school, helping with homework and packing lunches. Then they opened it up to listeners to share their biggest stress points ... and my mind went through my list of questions and fears.

Let's start with the fact that Teddy is not able to communicate, verbally or otherwise, what happens to him at school. He's going to a brand new school with likely a brand new team of therapists (that won't be determined until after school starts) where he knows no one. (OK, that's not true. I discovered last week my goddaughter and her cousin go to the same school, but they are in much older grades and likely won't cross paths often, if ever.)

That means that if something horrible happens to him, I won't know unless someone tells me. That means that if he has a miserable day, I won't know unless someone tells me. That means that if someone makes fun of him, I won't know. That means I will have no idea how he spends his day, what he does in therapy and whether he's enjoying himself and making progress ... again, unless someone tells me. That means I won't know when he does something amazing or makes someone's day with his mega-watt Teddy grin ... unless someone tells me. I won't know who his friends are or if he even is friends with his classmates. I'll know nothing unless someone tells me.

I know I can work with his team to get regular communication and key updates, but just think of all the little things children tell their parents about their days that I never get to know. And now that I'm in tears, I'll move on with my laundry list of stress points in a handy bullet point list:
  • Teddy had a horrid time with his bus rides home from school last year for the first two weeks, screaming hysterically the entire ride home. At least I could get a report from AJ about what happened because I felt like neither the bus driver nor the aide were willing to speak to me or even make eye contact when I helped a sobbing Teddy off the bus day after day. I really don't want to repeat that experience, especially since there's no AJ riding the bus with Teddy this year.
  • I worry about Teddy being picked on. I know he will be. I know kids will stare, laugh, point and do far worse things because he is different than them.
  • I don't want AJ being picked on because of Teddy ... or AJ hearing other children making fun of his brother. I know both will happen, probably not this year at school but still on my list.
  • I realized that Teddy is one of the 11 most profoundly disabled children in his age bracket in the entire school district. One of 11. And given what I know about his class last year, I'm going to go on a limb and guess he's one of the 5 most profoundly disabled children in his age bracket. This was somehow an epiphany to me despite being with Teddy much of my days, taking him to therapy and knowing his strengths and challenges. Somehow, it never occurred to me in that context until this week. Most of the time, when I'm not stressing about school, Teddy is just Teddy and that's perfectly normal.
  • Then I wonder how on earth our home school, where AJ is going this year, will accommodate Teddy next year? I can't even picture what that looks like because Teddy is at such a different skill set than other children his age. 
  • Then I worry about Teddy and AJ being at different schools and all the additional questions and stress points that come along with that topic.
  • The next illogical step for me somehow jumps all the way to Teddy moving into the adult service world and living in a group home because I'm afraid he'll require that high of level of care ... and feeling like a horrible parent for contemplating placing my child outside our home and wondering if group homes will still exist or if we'll move backward as a society to institutional care because it's cheaper and blah blah blah.
That, my friends, is my short list of back-to-school stress points. Oh, and I still have to figure out whether AJ is taking hot lunch or packing lunches. 

Thursday, August 17, 2017

Vacation - 3 Weeks of Memories to Last a Lifetime

We've only been home from vacation 3 days, and we're already in the swing of things with work, back-to-school preparations and childcare issues. But that can all wait for another day (even my anxiousness about school for Teddy, which I think is going to be an annual tradition ... and even our sitter giving her 2-week notice this morning). This blog post is a recap of our adventures on vacation.

This is Teddy scaling the sign at his namesake park: Theodore Roosevelt National Park.

When you take children who are 4 and 5 on vacation, you expect there will be stressful moments. It doesn't mean you like them, but you at least know they're coming when you spend 3 weeks together covering nearly 6,400 miles. Some of those stressful moments included Teddy deciding he didn't want to sleep (which was only really bad 2 out of 25 nights), Teddy screaming in the car because he was miserable (although I think there were fewer hours of screaming than on previous trips) and the second half of that 7-mile hike with all the pesky bugs and heavy children to carry (which was the only hike where AJ was carried for any significant portion ... after he earned a ride down by hiking up more than 1,000 feet over 3.5 miles).

Funny story: I almost pushed Teddy off this bridge. Oops.

With that said, this was honestly the least stressful and easiest trip since we've had two children. Now, if you weren't Dave and I, I'm sure you'd think we're crazy. When I compare the amount of assistance Teddy needs to previous years, that alone makes the trips easier. Yes, he's much harder to change and he's much, much heavier than the earlier years. But he can feed himself (at least in the vehicle), drink by  himself, sooth himself with a pacifier and pick up toys that he wants (using his feet, oddly enough, this year).

The biggest reason this trip was easier was that AJ hiked like a champ. He did nearly a 5-mile hike, which is his longest hike ever. He also did several other hikes up and down the side of a mountain. We discovered the trick to eliminating complaints is to get him focused on pretend play, which means Dave especially played a lot of LEGO Nexo Knights.

This snowfield was legitimately the hiking trail. I love this kind of stuff!

This trip took care of Dave and I visiting the last of the National Parks together in the lower 48 states. We've been to 48 parks, with only parks left to visit in America Samoa, Hawaii and Alaska ... all of which will be rather challenging and expensive with children. In the past 3 years, our boys have been fortunate enough to touch their toes in both the Atlantic and Pacific Oceans (3 times for the Pacific). They've traveled more of our country than many adults will in their entire lifetimes. And they have memories that will last them a lifetime.

Best dad ever. And Teddy love the ocean. He tried to wander into it every chance he got.
To give you an idea of our vacation, we visited:
  • Theodore Roosevelt National Park
  • Glacier National Park
  • North Cascades National Park  
  • Olympic National Park
  • Mount Ranier National Park
  • Grand Tetons National Park
  • Yellowstone National Park
  • Badlands National Park
In addition to that, there were 5 other sites within the National Park System that we visited. We visited one service shop to address warning lights/messages in our vehicle. We arranged for a friend to overnight my medication that I forgot, along with all my morning stuff. We spent 13 nights in our tent. Well, technically Teddy is the only one who spent 13 nights in the tent. The rest of us each spent one night sleeping under the stars in our hammock.

The way I look at it is that there will always be tears and stressful moments at home ... it's much easier to cope with them when I'm spending time in our national parks. These pictures don't even capture a handful of our adventures, so I might have to do another post of photo highlights. I'll leave you with this random photo that has nothing to do with Teddy or our family, aside from our hypothesis.

We're certain these are the inspiration for the Truffala Trees in The Lorax by Dr. Seuess.

Sunday, August 6, 2017

Vacation Update

The posts here have been lacking because we haven't had much cell reception, much less Internet connectivity. That's one of the things I love about vacation is that we get to disconnect from world by exploring wonders of nature and beauty. We're more than two weeks into vacation and still have a solid week left, so this might be the last post for another week or so.

In the past two weeks, we've explored:
  • Teddy Roosevelt National Park
  • Glacier National Park
  • North Cascades National Park
  • Olympic National Park
  • Mount Ranier National Park
  • Mount St. Helens
  • Columbia River Gorge, including the Bonneville Dam
A few things to note from this vacation:

Teddy and I got chased by a marmot in Olympic National Park. Another marmot didn't want to share his tasty wildflowers, so he chased his friend away. I happened to be in the way, with Teddy on my back. Marmots looked a lot less cute after being chased by one.

Cute ... until it's running right at you loaded down with a 40+ lb. child.
It hit me that Teddy won't participate in the typical Junior Ranger programs, the way AJ does. AJ looks forward to the activity books, collecting his badges and reciting his oaths. He's even been pretend playing Junior Ranger, which I love. But I had tears in my eyes at Glacier when I realized Teddy won't have the skills to complete Junior Ranger programs independently, even if he ever develops the interest and attention span. That hurts because it's been so much fun for AJ to participate ... AJ even did one activity book for him and Teddy to get Teddy a separate badge. It was so sweet yet bittersweet.

If you think hammocks are relaxing, try one with my two boys.
Teddy is heavy. 

This child loves the ocean. And bending into weird positions on his dad's shoulders.

Our national parks are beautiful. I love sharing them with our children.

There's nothing quite like an alpine lake. Well worth the hike. 

Saturday, July 29, 2017

Vacation-Anything But Relaxing

The vacations my husband and I took before children were not most people's idea of vacation. We're not beach people. We're not pool people. We're national park people. And we're not drive through and see the sights people. We're the hike everywhere, scoff at the moderate and strenuous ratings and see how much less time it takes us than the stated times people. (OK, that last part might be me.)

With kids, we traded or backpacks to carry stuff for several days of camping for ones that carry kids. Let me tell you something, kids wiggle a lot more. My pack never pulled my hair or adjusted my hat a million times before kids. It's not easy to hike with 45+ pounds of child on your back, but we still do it.

AJ has managed his longest hike on this trip: 4.6 miles up and back to a mountain lake. He also hiked 3.5 miles up the side of a mountain yesterday with 38 switchbacks and 1,500 feet of elevation gain. That earned him a free ride down the mountain on my back. Let me tell you, 5.5 miles of caring kiddos up and down a mountain is exhausting.

The good news is that AJ is getting older and more capable of hiking on his own. The bad news is Teddy is getting older and heavier to carry. Hopefully it balances out the next few years that Dave and I can split carrying Teddy without needing to give AJ rides, so we can continue to explore our great outdoors to the fullest extent.

But I think the rest of the family might need some horseback lessons because I see that as it future once we can no longer carry Teddy on hikes.

Hey, let's hike up a mountain like that!

Thursday, July 20, 2017

Happy Birthday with an F-Bomb

We received Teddy's diagnosis when he was around 2 1/2 years old, after nearly two years of searching for answers from his first seizures. Along with that diagnosis, we received 2-3 medical research documents that were literally all that was known and documented about the disorder in the medical community. One of those, from the National Institute of Health, read:

Multiple congenital anomalies-hypotonia-seizures syndrome 1 (MCAHS1): An autosomal recessive disorder characterized by neonatal hypotonia, lack of psychomotor development, seizures, dysmorphic features, and variable congenital anomalies involving the cardiac, urinary, and gastrointestinal systems. Most affected individuals die before 3 years of age.

Talk about a kick in the stomach to read that when your child is 2 1/2. Our first questions back to our geneticist surrounded that life expectancy. This is the answer we received:

I do not think we have any reason to believe that this syndrome would have an impact on Teddy's life expectancy. He is overall doing extremely well, and his seizures are in good control with the Keppra. There are a very small number of patients who are known with this condition, but certainly a good number of them are older than age 3. We also do not know what the cause of death was in the individual/s who passed away at age 3 or what other complications/medical problems they had. I will investigate further and let you know if I learn anything further about this.

I'm grateful our genetic counselor provided this answer, which seemed both realistic and optimistic. I've heard horror stories of parents who were told their child would never live, walk, talk or reach a variety of milestones. We've never encountered that personally from any doctors, yet we had it printed in black and white. And, you know it must be true if you find it online ... especially when it was one of three valid search results for Teddy's diagnosis. (Yes, when Teddy was diagnosed, even Google had little to no answers for us. Seriously, three search results. When was the last time you searched for something Google couldn't find?)

Teddy takes the saying Your presence is present enough quite literally.
So, this is a rather lengthy way to say, "F-ck you!" to the medical research we received in November 2015. And happy 4th birthday to my favorite Teddy in the whole wide world.

Tuesday, July 18, 2017

One of the Reasons Why I Love MTT

I know I continue to write about MyTEAM Triumph, but the organization and people associated with it have become part of our lives. If you're curious why, here's just a few of the reasons:

  1. Teddy, and all the other captains and angels, are welcomed with open arms and are accepted for who they are.
  2. The other parents of captains get it. Last night I showed someone the Yi Home Camera we use in Teddy's bedroom. She said that his bedroom setup looks identical to her son's bedroom. That's not so often the case when your child's bed consists of a large mattress directly on the floor. 
  3. Teddy loves the trailers and trucks that hold all the racing chairs.
  4. Someone shut his vehicle doors because he said, "I know Teddy well enough to know it isn't fair to him to leave my doors open." They understand Teddy's desire to explore, are comfortable with it and help me limit the temptations for him.  
  5. Teddy loves the racing bicycle.
  6. Every time one of the women sees Teddy, she scoops him up for a hug or lets him climb in her lap. She's even sat on the ground, so she could hug him when there wasn't a different place to sit. 
  7. It's safe. Not in the sense that Teddy couldn't get hurt somehow because he's Teddy. But we won't be judged for any of Teddy's non-typical behaviors (like licking everything).
  8. Teddy loves pushing the other captains.
  9.  There's a woman there who adores Teddy, and the feeling is mutual. She scoops him up for big hugs, twirls him around and occupies him while I chat with other people.
I'm sure I'll continue to share our MTT stories in the future, but I'll leave you with these pictures someone shared from last night's run, along with their captions from Facebook:

 Omg I seriously love captain teddy. Kerry Blondheim ur son smile is just amazing

 Love ur sons adventerous soul

Monday, July 17, 2017

Birthday Shopping is Hard ... Birthday Partnies are Fun

Birthday shopping for Teddy is one of my least favorite things to do. When I told my mom this, she laughed, until I explained. It's not that Teddy is hard to buy presents for because he enjoys a number of things and likes to play with toys. It's not even that there's nothing Teddy needs because he tears through clothes like no other, and most toys help him so much more than a typical kid with furthering his skills.

Happy birthday boy opening his presents.

It's that buying a birthday present serves as a stark reminder of where Teddy is not. Rarely would any of the toys appropriate for his actual age be appropriate or of interest to him. The things he would like are geared toward a much younger age group. Dave and I used respite last year to go searching for something for his birthday, and I ended up fighting back tears as we left Toys R Us with a single baby toy. This year I went to two toy stores after work, with a specific type of lacing toy in mind, so I thought it wouldn't be bad. I left the one store disappointed they didn't carry something like what I wanted. I left Toys R Us with a bit of extra moisture in my eyes but with a different toy that I thought Teddy would enjoy. Maybe I'm just allergic to Toys R Us.

Birthday shopping is the worst. It's because it's the time to buy presents for Teddy that correlates to his age. Don't get me wrong ... Teddy turning 4 is a whole positive, remarkable blog post in its own for later this week. Birthday shopping is what sucks.

But  his birthday party didn't. Because everyone else is able to focus on what I still struggle with when birthday shopping: the amazingly happy little boy who loves people. Our family and friends found wonderful presents for Teddy including blue jeans with elastic waistbands (to hold up to his wear and tear and allow him to help dress) and hilarious shirts (about not needing sleep or naps). He has a new assortment of toys that he (and AJ) will love.

It's not his fault he's dirty. He ate dirt cake. ;-)

Teddy spent his birthday party hanging out with all the people he loves, eating delicious food and opening (most) of his own presents with the assistance of his handy helper cousins. It was so neat to watch Teddy open most of his presents because that's something that's taken quite a while for the focus and ability to come together.

So the end to this ramblings is a heartfelt thank you to those who celebrated Teddy's birthday early with us (as we're heading on vacation on his birthday). You made his day special with your presence alone, but he'll also enjoy your presents much in the months to come.

Tuesday, July 11, 2017

1, 2, 3 ... Look at Me!

Timehop on Facebook reminded us yesterday that exactly a year ago Teddy was walking 7 to 8 steps independently, without prompting. This was a huge milestone for him, yet I cannot believe it's been such a short time that he's been walking. He walks like a natural (drunk). He can maneuver turns, corners and stops before he walks into doors and walls ... most of the time. He's able to transition to different surfaces much of the time and walks across grass like a pro (football player going for the tackle). It just amazes me how much progress he's made in this one area alone in a year.

One year ago: This boy is walking 7-8 steps across a room, unbribed by us to walk, he decides to do it all on his own!!!! He is even taking slight pauses in the walk.

Yet another reminder of his progress occurred this weekend. We were walking into a store, with Dave and I on either side of Teddy holding his hands because parking lots have a lot of distractions. We counted 1, 2, 3 and then swung Teddy up in the air by his arms and landed him back on his feet. This was the first time we've ever done that, not because we never walk holding his hands but because he wouldn't have had the balance and ability to transition back to walking from flying. I think we may have created a monster now that he knows how fun it is. Maybe he'll learn how to count 1, 2, 3 from this new workout for us ...

He reached two other mini-milestones this weekend. He climbed the rock climbing wall of our playground set, which is set at an angle with rock climbing holds. Then he safely sat down and went down the slide. He's done parts of this process before and possibly even the entire process, but this was his first time flying solo without a hovering helicopter parent right there to catch him (although I was debating how fast I could fly across the yard from our garden to the playground).

The other milestone was that we removed the baby gate at the top of our basement stairs. Now, mind you, this isn't because we're completely confident in Teddy's ability to safely navigate stairs. In fact, Dave is terrified Teddy is going to try walking up or down and hurt himself ... or that Teddy will simply walk right down the stairs without realizing there's stairs there. But, we decided this was the safest route to minimize ER visits since Teddy has been attempting to scale the baby gate to go over it. He reached the point where he could get one foot hooked on top, so we removed the gate before he flipped himself over the gate and down the stairs. I'm optimistic this will help him become more aware of his surroundings that he won't just wander off the top of the stairs and I'm comfortable with him practicing some stairs walking instead of wiggling on his butt ... but I'll let you know whether the stairs or Teddy win. I'm pretty sure it will only take one ER trip for stitches before we install a half door that will buy us another year or two before Teddy figures out how to scale that.

I've said it before and will probably say it many more times, but these little things are such big things for Teddy and for us. They make my heart happy (when it starts beating again after he scares the daylights out of me).

Wednesday, July 5, 2017

Teddy's Spirit Animal

If I were to believe in reincarnation, I'd be adamant Teddy was a panda bear in a past life. When I watched this video shared by Vix on Facebook, I couldn't stop giggling. Teddy is a panda bear.

He grabs onto you and clings to you. He topples over losing his balance. He pulls your hair. He dumps any container placed in front of him. He tries to escape from where he's supposed to be. He goes where he's not supposed to go. And he looks absolutely adorable the entire time.

Now, if you need me, I'll be watching more Teddy, I mean panda bear, videos.

Friday, June 30, 2017

See You Later, Not Goodbye

The last two years have been the most consistent, best childcare we've had since we lived in Denmark. We've went through our share of sitters for the boys. We considered reformatory school after not one, but both boys got kicked out of separate childcare settings. After yet another bad experience, we tried recruiting childcare through the local university.

And we hit the jackpot. We found a nursing student who was comfortable with Teddy's history of seizures (which is why he got the boot from one daycare provider) and his disabilities. She was willing to come to our house to watch the boys, which meant they had a safe, familiar environment. She was agreeable to taking them out into the community to parks, the children's museum, etc.

Throughout the last two years, she's watched Teddy reach milestones we weren't quite sure he would hit. She's encouraged his progress, reported his new accomplishments to me and taken pride in his skills. Teddy's face lights up whenever she enters our house, addressing him as Mister. Teddy routinely tries to leave with her at the end of the day, wanting to continue his fun with her.

She's been one of a handful of people who've successfully watched our boys in the evening and has become familiar with their bedtime routine. She's administered Teddy's anti-seizure medication, monitored his temperature and ensured his safety ... as much as possible because, after all, he is Teddy.

She's played games with AJ. She's endured hundreds of questions from AJ, along with tantrums for saying no to his use of tablets or television. She's played outside with the boys at different parks. She's taken them out to eat (no easy feat by yourself). She's fed their love of ice cream (literally).

She's taken Teddy to the waterpark by herself, lugging him and an tube up the slide multiple times and redirecting him from the deep end of the pool, which is of course his newest fascination. She's recruited another friend to accompany her to the waterpark, so she could take both boys.

She's always been willing to help out when we needed it, whether for me to escape to work or for us to escape using respite. She's been flexible to come early and stay late. She's taken Teddy to his horse therapy appointment an hour away, with AJ in tow. She's taken AJ to gymnastics class with Teddy in tow.


She referred another amazing person to us who became our second childcare provider. Combined, they provided my mom with the support she needed (during finals week of all times) to watch our boys for a week while we were in the Virgin Islands. They made that experience doable for my mom, which means another trip without the boys remains within the realm of possibility.

Yet, she had the audacity to graduate from college, pass her boards, become a RN and accept a pediatric nursing position across the state. I'm so happy to see her pursuing her dreams and know she'll be a terrific nurse for any children she encounters, regardless of their needs.

At the same time, I had a hard time not crying yesterday when she left our house for the last time. She made the day as special as possible for the boys, taking them to AJ's favorite restaurant (Buffalo Wild Wings) for lunch and then to the store to pick out goodbye gifts from her. I can't help but think of the Dr. Seuss quote:

“Don’t cry because it’s over, smile because it happened.”

Now, to brace myself for our other sitter's last day next month ... 

Sunday, June 25, 2017

Teddy Likes Tractors

Another weekend in June, another dairy breakfast. Both boys enjoyed the food, especially the watermelon that we encountered here for the first time. There was an awesome collection of cute little animals including sheep, goats, chickens, ducks, llamas, cows and bunnies. Teddy got to pet a fuzzy baby bunny and a cuddly baby goat (that I would have liked to keep).

Just think ... we could create goat therapy!
 Teddy also got to sit on a few tractors, which he absolutely loved.

That smile ... that kid.

I think he's going to be sad that June Dairy Month is over ...

Tuesday, June 20, 2017

Brave is not the Same as Fearless

Yesterday at hippotherapy, Teddy's therapist commented on how brave Teddy was. My response was, "There's a difference between bravery and having no fear." She meant that Teddy was willing to try whatever position they maneuvered him into on the horse with complete confidence that they'd keep him from falling. They had Teddy ride side saddle to engage different muscles with the side-to-side motion. They had him lay on his belly across the horse to work on his neck and core muscles. They waited for Teddy to notice he was sliding off the horse and encouraged him to readjust himself, which he actually did several times.

video

His fearlessness showed  through at the parks we visited yesterday as well. There was the time he was going to just go off a 4-foot drop that was at the top of the rock climbing wall. He didn't try to walk off it. No, he safely sat down on his butt and was going to scooch off it. Safely, of course. (I caught him.) Then there was the time he thought it would be a good idea to walk across the uneven steps that were suspended 3 feet off the ground, with each step about 1 foot apart. After catching him multiple times, I lowered him to the ground.

As much as he does need to develop a healthy appreciation for his own safety, his fearlessness gives him the freedom to try new things and continue to push to do more to keep up with AJ and the other kids. He walked, safely and successfully, up and down many gradual ramps at the park all by himself without holding onto anything. He walked up a steeper ramp with rock climbing holds while holding onto the rails, all by himself. He continued to pop up to his feet whenever he fell (or dropped to his butt to safely navigate an obstacle that he knew he couldn't manage on his feet).

That fearlessness gives him freedom ... and lots of scrapes, bumps and bruises. (Most of which he doesn't even notice, so I suppose that further enables his fearlessness.)

Friday, June 16, 2017

Getting Hot & Sweaty with Teddy

AJ has spent this entire week at my folks' house, filling his days with LEGOs, games, Lite Brite and more. He's went to Firehouse Ceramics twice to work on pottery, and he spent all day yesterday at Circus World. Honestly, I'm a bit jealous.

As nice as it is for AJ to spend some time enjoying himself (instead of going along to three appointments for Teddy this week and having Teddy constantly requiring my attention), it's also nice to have Teddy to myself. We get a few more snuggles and cuddles in the morning. Teddy doesn't bug me about tablet or TV ... in fact, I can pick out a movie to watch with him because I know he won't repeat any of the swear words or be scared by the bad guys.

It also gave me the opportunity to take Teddy for a run. Normally Teddy and I run with myTEAM Triumph on Monday nights, but the weather didn't cooperate this week. I had a 5-mile run on my training calendar, so Teddy and I hit the trails in Neenah after his therapy appointment. (It was one of his best PT appointments I can recall. He did 11 sit-ups without complaints, did all the sit-to-stand activities and obstacle course that was expected of him and rode the tricycle like a rock star.)
The Trestle Trail bridge is so scenic.
It was hot. Running when it's 78°F and sunny while pushing a stroller (with a few flat tires that I discovered after about a half mile) makes it feel like you're running in Death Valley. But it was a beautiful place to run. We went along a portion of the half marathon route for the Fox Cities, so I sort of knew where I was going enough to not get lost. The trail goes along the water for a good portion and is rather peaceful as long as you don't mind the sweat pouring off you.

I wonder why only one of us is red as a lobster? Maybe next time Teddy can push me.
Afterward, Teddy insisted we go check out the park. It was a pretty awesome park, and he had a blast. He went down a few slides all by himself (first one was belly first ... not his best idea). We definitely need to go back there as a family to perhaps take the paddleboard out on the water, walk the bridge together and play in the park.

Monday, June 12, 2017

Bellin Buddies

If you're familiar with our family, then you know about myTEAM Triumph (MTT) and I Run 4 (IR4). Both are non-profit organizations that aim to build relationships and foster inclusion through partnering athletes with people with disabilities. MTT focuses on in-person relationships within local communities, and IR4 takes advantage of technology to build an online community. Both have had a tremendous impact on our family, and this past weekend combined the two together for  the first time.

Teddy's running buddy Heather, from IR4, made the (extra) long drive (thanks to horrible traffic) from Michigan to our house in Wisconsin. She and her husband Steve had volunteered to be Teddy's angels through MTT for the Bellin Run this past weekend. That meant they both fundraised a minimum of $100 (to cover entry costs for themselves and ensure captains like Teddy can race for free). They took time off work. Then, after spending most of Friday driving here, they got back in a car at 5:30 a.m. to head up for the race.

Captain Frumpy Face Teddy

Teddy was a bit sleepy, which actually worked out well because he wasn't trying to escape from his race chair during the pre-race preparations. (He was in his chair longer than usual because there were a record 41 MTT teams, which required a bit extra coordination.) He perked up about a third of the way through the race and realized he could play with the balloons we had attached to his chair. (I'd definitely do that again because it let the runners passing us from behind know Teddy's name to cheer for him.) Teddy got stopped by Davon House, one of the Green Bay Packers, for a photo opp (that unfortunately didn't turn out but was still pretty darn cool). He loved every sprinkler we went through, which was quite a few. Teddy shared a freezie pop with Heather. (It was so hot that several people along the route were handing out freezie pops out of their Midwestern hospitality and generosity. We passed up the free margaritas, though, because we thought we perhaps shouldn't tarnish Teddy's and MTT's image.)

Teddy flying with his MTT (and IR4) Angels

Each race with MTT has been incredible in its own way. This race literally flew by, even though it's the first time Teddy's done a 10k instead of a 5k. I've done the Bellin more than 5 times, and this was by far the most fun I've ever had doing the Bellin. I think my PR (personal record) from last year will stand for quite some time because I don't see myself running the Bellin again without Teddy and MTT. Not only did Dave and AJ join us, but we also had both sets of grandparents cheering on Team Teddy. (And his speech therapist found us before the race, which is remarkable considering that we were among 13,000 people there!)

The rest of the weekend spent with our family and Heather and Steve was equally awesome. After Teddy took a much-needed nap, we  headed to the waterpark in town. He led Grandpa through all the sprinklers in the kiddie area while the rest of us watched in amusement. AJ loved the lazy river, and so did Teddy, especially all the sprinklers. We went down the waterslides a few times, which is Teddy's favorite part.

This is one of my favorite photos of the weekend!

It was incredible to meet Heather, who's basically a celebrity among our family because of how supportive she is of Teddy. Now Teddy knows there's a person behind the photos I show him when Heather shares pictures with us. Teddy adored her and was a bit infatuated with Steve (probably because he convinced Steve to give him a piggyback ride). This weekend reaffirmed our desire to get to Michigan to meet my running buddy Luke and AJ's running buddy Miss Bridget. We'll see ... we already started plotting doing the Detroit marathon in 2018 as a relay team of running buddies!

Tuesday, June 6, 2017

June Dairy Month

Growing up on a farm in Wisconsin meant that June was my favorite month of the year. It wasn't because school was out. (That happened in May when I was in school.) It wasn't because we made hay. (Hot, sweaty and itchy. But there was the occasional ice cream treat or popsicle afterward.) It was because June is Dairy Month.

For those of you unfamiliar with this wonderful tradition, June is the month we celebrate farmers and all things dairy. It meant our local bank always was stocked with cups of ice cream, so we begged to go to the bank. It also meant that on weekends, we went to a dairy breakfast if there was one in the area. A dairy breakfast is, quite simply, breakfast served at a local farm. Usually a shed for equipment is emptied, and tables are set up inside there for people. Breakfast could include any of the following: pancakes, eggs, sausage, cheese curds, cheese cubes, yogurt, applesauce, cinnamon rolls, juice, coffee, milk (including chocolate, of course) and ice cream. The really good breakfasts offer root beer floats or sundae toppings. The sketchy ones make you pay an extra dollar for your ice cream . The ones not worth going to don't have ice cream.

Yes, ice cream for breakfast. Welcome to Wisconsin in June. (Or my house on any given day ... kidding, of course.)

Funny story: AJ loved the eggs and asked to make them at home ... until he realized they were eggs.
Often, there's animals for children to pet, coloring books or activities, tours of the farm, wagon rides and such. It's an opportunity to support our dairy farmers while educating a bunch of town folk who might otherwise not experience a bit of farm reality.

And all this background leads to what we did last Sunday. We went to a dairy breakfast. Teddy thought the tractor ride was pretty cool. He thought the pancakes were delicious and thoroughly enjoyed his ice cream. (He ate his ice cream while AJ and their friend dug through a pile of sawdust for 18 minutes digging for change. AJ made a whopping $0.96, and their friend found $1.36.) He really liked petting the soft pretty lamb and the fuzzy bunny who shared the same name: Teddy.

Carrying on these traditions with my boys is pretty fun. I mean, who doesn't want ice cream for breakfast?

Seriously, farmers are pretty creative. They wanted the back where it bounced around the most.

Monday, June 5, 2017

Horse Show and Family Fun

This past weekend was everything good about summer all wrapped up into two days. Saturday was the annual horse show at Exceptional Equestrians, where Teddy attends hippotherapy. Since it was our first time participating, we had no idea what to expect and were pleasantly surprised by what a nice event it was.

Teddy thinks it's super fun to be in the back of a SWAT vehicle.
Teddy was fascinated by the SWAT vehicle that was there (because of the local police department's partnership with the barn for its officers who patrol on horseback). I'm pretty sure he's the first person who's ever licked that SWAT vehicle. And one officer now has Teddy drool on his helmet strap, but Teddy thought he was cool wearing the big helmet.

This was how happy Teddy was to show off his skills. (Or just ride his horse.)

My mother, aunts, cousin and her child came over for the day, so AJ had a friend to play all the little games. They both walked away with armfuls of loot, plus balloon animals. Dave's folks came as well, and they thoroughly explored the SWAT vehicle as Teddy kept leading them there while the older children played games.

Teddy's trademark smile.

Teddy rode for about 15 minutes with 3 other riders. He loves watching other people and smiles when he sees them, so he had a huge grin on his face most of the time. He did an awesome job telling his horse to start walking by patting her. At the end, each of the riders was presented with a trophy, which Teddy thought was pretty darn awesome. (And Teddy has a cool shirt from the event that he needs to grow a bit to fit.)

Hey look! They gave me this shiny thing!
We stayed for AJ to ride during the break, and he thought it was pretty neat to ride a horse. Then we ate lunch there, supporting the barn while enjoying burgers and brats.

AJ enjoyed riding his horse. It was neat for him to get a chance to ride.
After the horse show, we went to Bay Beach with my family. Bay Beach is a small amusement park in Green Bay with rides ranging from a quarter to a whopping dollar (for the roller coaster). For $20 of tickets, we had a couple hours of fun with every adult enjoying at least one ride. Trust me, the kids enjoyed all the rides. Teddy still loves the carousel, but he thought he was pretty darn cool riding in a little car ride by himself. (There were a few rides we felt comfortable having Teddy ride alone because they had seatbelts to contain him and were pretty low key. Let's just say that when Dave put Teddy on the swing ride, I headed the opposite direction for the bigger swings to avoid witnessing that. It turned out fine, though.) I thought it was pretty darn cool that Teddy could walk up some of the 3 flights of stairs for the giant slides ... last year I had to carry him the entire way up!

It was an absolutely perfect day spent with family making memories!

Wednesday, May 31, 2017

The Difference A Year Makes

One year ago in May Teddy started taking his first independent steps. He wobbled like he would tip over with each step, but he took 3 steps. Then 4. Then 5.

Walking was not easy for Teddy. (What's the first clue? That it took him until he was nearly 3 years old to take independent steps?) But he was determined to keep up with AJ and explore anything and everything. By the end of last summer, Teddy was walking further distances with two hands held for assistance, shorter distances with one hand held for balance and brief distances independently. The instant he encountered uneven terrain, he'd drop to the ground instead of attempting to navigate it. His arms were constantly flapping around for balance.

When Teddy started school last fall, we sent along his gait trainer to use in the hallways and gym, as he didn't use it much at home for the shorter distances (other than crashing into our walls). At school, he preferred to crawl or hop because it was faster but periodically would choose to walk from place to place. At home, he walked more and more.

In winter, he walked on slippery snow for the first time by himself. He used two hands for assistance less and less. He got into more and more trouble. His arms gradually spent more time at his sides rather than flailing for balance. But he walked into every door or wall that stood in his way. His speed was full bore or crash into something to stop. We changed all the handles on our cupboards after he nearly poked his eye out with one of his crashes.

In spring, his gait trainer came home because it was collecting dust at school. That goal of walking to and his classroom? He had mastered it. His teacher said how nice it was that Teddy could walk places and allow other friends the opportunity to ride in the wagon occasionally. He had learned to control his motions enough to stop and change directions with relative ease. (He still did the occasional tumble over mid-stride, and I tried not to laugh as he toppled backward into the bathroom while walking forward across the kitchen. How do you even do that?)

This month, a year after he started walking, Teddy walked across an uneven, soft farm field. He transitions from grass to smooth services without pausing. He is attempting to walk up every hill or uneven obstacle he can find. He'd rather step on the objects instead of stepping over them in physical therapy. He's not running, but he's about as fast as he can be without running. His hands are going back up again, but now it's to play with his hair or be silly instead of flailing for balance.

Yesterday I watched Teddy take the walker that his physical therapist had pulled out for him to use for balance while stomping and kicking. He took it up and down the hall for a stroll, and it looked ridiculous, quite frankly, because he had no need for such a thing.

And yet there was a time we wondered if he'd ever be able to walk independently ... the difference a year makes indeed.

Thursday, May 25, 2017

Farm Therapy

We spent Mother's Day weekend at my parents' farm, and both boys thoroughly enjoyed their weekends. They spent the majority of their time "helping" my dad and uncle. They rode on the 4-wheeler, in the golf cart with my 94-year-old grandpa and in the tractors. They were covered in dirt from head to toe, and Teddy licked the windows of  the tractors clean ... ish.

This window is delicious!

Since Teddy's favorite place to be is outside or in a cool vehicle, he couldn't have been happier bouncing from one fun farm toy to the next. He actually rode in a tractor for nearly a 2-hour stretch, which is rather remarkable for his attention span (and the sanity of my uncle if we're being honest).

When we first arrived at the farm, Teddy made a beeline straight for the first tractor he saw. He circled it and couldn't seem to figure out why no one was there to give him a ride. He got his rides soon enough and apparently decided he was capable of climbing all the way up the ladder to the tractor. When you look at the pictures, you can appreciate the muscle coordination, planning and strength that went into that feet for this little daredevil.

At least the ground was soft.

But he made it. And he's rather proud of himself. And I'm proud of him.

Teddy's making progress in scooting along in toys and is experimenting with pedaling. He understands the concepts and is starting to get a few rotations in with the pedals. He had fun playing on a tractor more his size when he couldn't convince the adults to give him rides.

Little farm boy.

If you've never walked across a farm field, you might not appreciate that it's not the easiest walking because the ground is uneven and quite soft. That didn't stop Teddy from walking darn near everywhere in the field when the tractor was stopped to reload seed to plant.

video

After all that hard work, Teddy found a new way to ride in style. His favorite thing about my grandpa used to be his cane. Recently my grandpa switched to using a walker more of the time to help him get around easier, and Teddy thinks that's even better than the cane as a toy. (But he still was happy to have the cane to use as a weapon while riding!)

This is one of my favorite pictures! They're both so happy.