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.