Trust Me, We're Not All That Special

Our family gets judged. At times, it's by others in public who give me the side eye as I fireman carry Teddy away from where he wants to be or have him flop down on the ground refusing to move. Other times, though, it's by friends or family who seem to think we're super parents when, in reality, we're not.

We're just like other parents. We are excited for our children's accomplishments, whether that's AJ learning multiplication in first grade or Teddy mastering the art of stacking canned goods. (Stacking has been a really hard skill for him.) We love to hear our children laugh and giggle and take joy in their joy, whether that's AJ's hysterical laughter during Home Alone movies or Teddy's excitement to have vacuum cleaners. We get frustrated when they don't listen, like my voice somehow being in an octave that AJ magically cannot hear or Teddy completing disregarding our requests at least 75 percent of the time.

When people say how remarkable we are as parents, I appreciate the kind words but know the reality is that we get frustrated more often than we should. There are moments where my patience is completely exhausted by Teddy's determination to do exactly what he shouldn't ... lots of them, honestly. But then there are the mornings where I go into his room, roll around with him and snuggle him with kisses and laughter.

I appreciate the thought, although I don't think it's true.

Basically, we're human, which means we're nowhere near perfect. But all those prayers from our family and friends go a long way in giving us the grace to keep trying and extend my patience.

Merry Christmas ... A Few Days Late and Vacuums Later

A belated Merry Christmas from our family! We spent the past week with good neighbors and family and are enjoying a quiet night before celebrating Christmas and birthdays with the other side of the family.

Highlights of our celebrations included a last-minute Christmas gathering with our neighbors from our cul de sac. Everyone happened to be available Friday night, so we had our 6 families gather at our house for an evening of margaritas, food galore, laughter and fun. We created a saran wrap ball for the kids, which was followed by a plethora of presents from neighbors. I was amazed that the boys received gifts from three different neighbors. One neighbor gave all 6 kids lights for the wheels of their bikes, which was pretty cool. Teddy kept taking one neighbor down to the basement to ride the exercise bike with him, and she was a great sport about it. It's really fun and relatively easy with Teddy to have our neighbors to our house, so there's already talk of a Father Time gathering for January or some other contrived excuse to gather and drink margaritas.

Saturday my family began arriving, which made the boys quite happy, particularly when their aunt and uncle showed up Sunday with the two fun-loving dogs. Teddy adores Zed and Rook, perhaps a bit too much since he lets Rook lick his face non-stop. (She's a puppy who's still working on boundaries ... lots of similarities to Teddy). He loves to chase them, wrestle with them and play with their toys.

Complete disregard for personal space & perfect for each other.

It's nice when there's a house full of people because there's more eyes to keep on Teddy and more people to play with AJ when he needs a break from Teddy. We added two more dogs and three more people Christmas Day with my uncle, his girlfriend and my grandpa. My grandpa usually winters in Texas, but he's been stuck here in Wisconsin much longer than he'd like while waiting for heart surgery. (Apparently that happens when you're 96.) That meant I got to spend Christmas with him for the first time since I was in elementary school, and my boys got to spend Christmas with him for the first time ever. That was the absolute best present I could have gotten this year, and I soaked up every moment.

96 years old wearing my super stylish Goodrs.

The boys got a plethora of cool presents. As soon as Teddy realized the presents under the tree were fair game, he was under the tree unwrapping as he laid there, regardless of whose gifts were in his hands. He was less interested in his pile of presents and preferred to go around the room opening whatever gift caught his interest, so he helped just about everyone. Among his gifts were two vacuums. One is a real one my aunt snagged at Goodwill, and the other is a toy Dyson from his running buddy. His face lit up when he realized he was getting vacuums for Christmas.

A boy and his beloved vacuum.

It's always a bit stressful to have extra people and dogs who don't always get along perfectly, but it's absolutely worth it for the memories we create. From card games to saran wrap balls to incredible Christmas light displays to a Christmas day run, walk and bike ride event, we made many memories ... and learned a few things to make next year's saran wrap balls even more fun.

The Sweetest Brother

We've often said that AJ is a better person because he has Teddy as his brother. He's growing up with not only his brother's disability but also the circles of friends we've made with a wide range of disabilities. He floored me the first time he asked if I thought another child had special needs because of his stimming because I didn't even know he knew the phrase. It's been interesting, and heartwarming, to see how he processes Teddy's differences.

Last week, he nearly made me cry right before we walked into a store. AJ asked whether he and Teddy would live together when they were grown up. I said that typically brothers don't still live together when they're adults, just like his dad and uncles all live in different houses. His response was that he wanted to live with Teddy because he is his brother and he loves him and would miss him and he has special needs. Then, ever pragmatic, he said he would need breaks though. I asked how he'd get those breaks if Teddy lived with him. He said he would have a job outside the house and go shopping. (Can you tell how we as parents get breaks from Teddy?)

The reality is that if he chooses to live with Teddy in the future, I want that to be completely a freely made choice not an obligation. I want AJ to be able to live his own life and not be burdened with the responsibility of being his brother's caregiver. Trust me, that's something that I struggled with a lot when Teddy was first diagnoses. I even told Dave that the best-case scenario with Teddy's grim prognosis (a life expectancy of 3 years in the initial research paper we were given) was that AJ would have to take care of Dave, me and Teddy as an adult.

Then last night AJ shared his Christmas list to Santa. I think he had about 20 things on there, including typical things any 7-year-old boy might want:

• LEGOs
• Magic set
• Juggling kit (beginner)
• Tablet
• Phone
• $100 bill

Then there were things that aren't quite so typical:

• Play dough (for Teddy)
• Teddy to say his 1st word

A portion of AJ's Christmas wish list.

Dave was too busy chuckling about the $100 bill that he didn't hear the wish for Teddy to say his first word until I had AJ read it again. Talk about melting my heart. As parents, we're not the only ones who would love for Teddy to talk. AJ told me a few weeks ago that he wished Teddy could talk because he has lots of questions for Teddy. One of his questions is whether Teddy likes having AJ as his brother. I told him that I could answer that without a doubt that Teddy adores AJ as his big brother.

I'm sure there will be times, especially when AJ hits his teenage years, that AJ will drive me absolutely nuts. But, for now, he's the most incredibly sweet boy I could imagine. 

MyTEAM Triumph Holiday Gathering

During summer Teddy and I spend most Monday nights running with myTEAM Triumph. We've been regulars the past 2 years at the training runs, so we've gotten to know many of the other regular captains, their families, angels and volunteers. The only problem is that we don't run through the winter months, which means we hardly see our MTT friends. 

It's taken a while to realize this, but Dave and I discovered at Halloween how easy it is to invite people over to our house during the winter months. Teddy has our entire house, which is Teddy proof, to play without any fear of him taking off (which happens often when we're outside) or breaking things (which happens at other peoples' houses) or getting into a lot of things he shouldn't (which happens pretty much every where). Our house is relatively easy to supervise Teddy whereas just about everywhere else requires constant 1:1 with a whole lot of redirection and physical wrangling.

So, we invited all the Fox Valley MTT group to our house for a holiday gathering. Despite the short notice, we had a total of 4 Captains and their families and 3 of the crew join us. We spent a couple hours snacking, talking, enjoying each others' company, sharing all our cool toys, snoozing in our comfy circle chair and playing cards. It was an absolutely perfect afternoon.

MTT friends who become like family.

AJ was the best host, getting drinks for people, handing out candy canes and sharing all the cookies and treats. We ended up with quite the spread of snacks, thanks to everyone's generosity. Dave set up the tripod to capture the entire group picture. We got to spend a couple hours with people who we see often but don't always get to have the in-depth conversations with since I'm usually chasing after Teddy unless he's strapped into the race chair. 

The host with the most.

One of the best parts of MTT is how accepting and understanding everyone is. Things that set us apart in the community, like taste testing every non-food item, are perfectly acceptable among this group. Toys that might be considered not age appropriate are really quite fun for a wide range of people, and that's perfectly OK. Teddy can invade people's personal space with no issues ... aside from us keeping the baby from being squished by a loving Teddy. (Even Teddy's gentle version is a bit rough for newborns.) Everyone keeps an eye out for each other's needs and steps in to help where needed, whether a helping hand, a supervisory eye or simply not being convinced to undo the child safety locks. (Nice try, Teddy.) 

Teddy loves babies almost as much as Ann. 

Simply put, acceptance is such a wonderful thing. Not being so terribly different is nice sometimes. In fact, I think 3 of the 4 Captains all have had mattresses lying directly on the floor in their bedrooms because it worked for them, Teddy included. Another Captain had his bedroom closet doors removed, which is exactly what we've done in Teddy's room because it's apparently quite fun to kick the doors when you don't want to sleep. 

We had a house full of people all day, with play dates for each boy this morning and this gathering this afternoon. House full and hearts fuller. 

Music, Cookies and the Slightly Creepy Big Guy

Last weekend we went to a Christmas music program sponsored by Easter Seals. I happened to see a flyer for it shared on Facebook and thought both kids would really enjoy the music program, which was led by a music therapist. Music therapy is about the only therapy we haven't done with Teddy, largely because I never came across a program.

Teddy loved the music and all the people. AJ loved dancing and singing and playing instruments. I loved that since it was geared for special needs that I didn't need to apologize for or even explain Teddy. Teddy moved around the room, sitting in every open seat for a few minutes and sometimes other people's laps. He didn't know any of them, but he's a very social little boy who doesn't have any respect for personal space. In other settings, that usually requires at least a quick apology, redirection of Teddy or explanation to his newly chosen friend. This was somewhere he could just be himself without the need for that.

Santa Teddy was pretty excited to be there.

By far the music and the people were Teddy's favorite parts of the event. AJ liked decorating the cookies and doing a craft as well. Then we went to see the big guy.

Now Teddy historically is a bit freaked out by costumed characters. He's becoming much more intrigued by them, but it's the only time he respects personal space. His bubble goes from non-existent to at least 3 feet, preferably more.

Note the skepticism on Teddy's face. 

This particular Santa lilur Teddy in with his bells, and Teddy got close enough for me to sneak a picture. Then when Santa helped Teddy into his lap, Teddy climbed down and ran away. So AJ stayed chatting shyly with Santa until Teddy and I returned from a safe distance. We even managed a few photos of the four of us with me serving as the safety barrier between Santa and Teddy.

All we're missing is Dave, unless he's really Santa?

It was a phenomenal event just because it was so welcoming for everyone with excellent volunteers. I'll definitely be looking to see if we can attend again next year.

Cookie Decorating ... Err ... Sensory Activity

This past Friday I headed to Teddy's school. After meeting with his physical therapist (finally for the first time since school started), I headed to his classroom to help with a sensory activity. That's what I called it when I offered to come help his classmates decorate sugar cookies because the school district is rather particular about any sort of homemade treats for children. But how can I help it if the kiddos eat their perfectly edible sensory activity?

He doesn't need to look at what he's doing ... ever.

Anyways, Teddy and two of his classmates enjoyed decorating their cookies. His classmates put on multiple rounds of frosting because it kept falling off their cookies ... right into their mouths. Teddy actually had no interest in eating his cookie because he was having too much fun decorating and showing off. A few other classmates watched from a distance and came to enjoy the finished products. 

I made the sprinkles easy to shake onto cookies.

It was a simple activity, lasting no more than 20 minutes, but it was well worth the time and effort to put things together. It was nice to see Teddy in his classroom setting, and he was certainly excited to see me come into his classroom. 

He was very excited to see me and the cookies, too.

Perhaps we need to do another sensory activity around Valentine's Day?

Holiday Fair

Teddy's school does something called a Holiday Fair, which is quite the event with raffle prizes, Santa, cookies and games. But the highlight, which the $3 admission includes, is that each child gets to shop through donated gifts to pick out presents for whomever they'd like. The best part, in my mind, was that kids got to do this on their own because there were volunteer "elves" there to help with the shopping, according to the information about the event.

I thought this sounded like a perfect opportunity for Teddy to participate in something at his school, like the other kids, and thought we'd perhaps see some of his kindergarten friends there. I wasn't quite expecting the massive amount of people, but I had at least anticipated that I should take Teddy's Kimba Kruze to make it easier to navigate. I figured if I was going to hand him off to a strange elf that I should at least somewhat immobilize him to facilitate the experience actually being productive rather than destructive. I mean, really, it's just not fair to hand a stranger Teddy and say, "He's non-verbal. Can you please help him pick out something for his 7-year-old brother, mom and dad. Good luck, too, because he'll want to get into everything."

We waited patiently in line, seeing one of Teddy's therapists from last year, who he unsuccessfully tried to convince to release him from his chair. We didn't see any of Teddy's kindergarten friends as far as I could tell, which I'd only know if someone would have greeted Teddy.

Soon enough, it was Teddy's turn to go into the room to pick out his gifts. As I was about to explain to the volunteer what assistance Teddy would need, she simply said, "OK, you can go in that room."

A bit surprised and disappointed, I pushed Teddy into the room. When I saw only a single very hands-off "elf" to help a half dozen kids with their shopping, I understood why I didn't even have the opportunity to explain what Teddy needed.

Sure, I could have taken the time to ask, explain and make the request. But that's hard to do when you already know it's extra work for your child to participate. If someone makes it easy, then you don't feel bad about the inconvenience of the extra work. But when you have to stop the process and go out of your way to request it, sometimes it just doesn't feel worth the effort.

So, I helped Teddy pick out two gifts for AJ. I figured with all Teddy does, intentionally and unintentionally, to annoy AJ that he probably deserves all three gifts that Teddy could have picked. Then I picked a gift for Dave from Teddy because I didn't see much point in me picking out a gift for myself.

It's one of those cases of expectations not meeting reality, where I ended up with tears in my eyes. I had hoped it would be a great way for me to feel like Teddy really belongs at his school, and I just didn't. But the reality is that Teddy enjoyed himself, got two cookies out of the deal and AJ will be thrilled to have a couple gifts from Teddy. So while I didn't love the experience, I think it was indeed worth it because Teddy enjoyed himself. That's what matters most.