Race Days are the Best

Teddy completed the Oshkosh 5k today, which was his third race with myTEAM Triumph. I've written about MTT in the past here and here. Short summary is MTT is an incredible organization that partners angels with captains like Teddy who otherwise wouldn't be able to participate in these type of athletic events.

When I saw a call for additional captains, I signed up Teddy since we were around this weekend with me registered already for the half marathon. I'm so glad we did because today was one of those days that makes my heart so full and so happy.

Teddy and I got to see the MTT support van with Teddy's smiling face!

A few captains were unable to make the race because of rather cruddy weather, barely 40 degrees with the threat of rain and gusty winds, so Teddy had several extra angels. He absolutely loved all the attention!

Teddy loved having all the extra angels today!

I had hoped to catch up to Teddy because the 5k ran the same first mile as the half marathon, but his team was too fast. No wonder, they were the first MTT team to cross the finish line. In fact, they were so fast (with their head start before the 5k started) that only one 5k finisher crossed the finish line before them. The person who was about to finish in second place stopped to allow Teddy and his team to cross. When Teddy's angels attempted to wave this person past to his 2nd place finish, he insisted in walking across with Teddy.

Notice the man in blue cheering Teddy across the finish line!

I didn't witness it because I was somewhere on the half marathon course, but from the snippet of video, pictures and descriptions from my family and the MTT organizers, it was one of those magical moments.

Teddy thought his trophy was pretty cool.

So thank you to the man in blue who let Teddy finish ahead of you. Thank you to his enormous team of angels who made the day special for him. Thank you to his angel Sheila for the two autographed children's books that she authored and gave to Teddy. Thank you to my family for cheering on Captain Teddy. Thank you to MTT for making days like this possible.

Denied

December was the last time Teddy had outpatient physical therapy approved by Medicaid, which is his secondary insurance coverage. January is when the denial for PT arrived, after a few weeks of processing. The first week in March is when the hearing happened, via telephone of course to prevent me from dramatically marching Teddy into the hearing to show everyone why it's obvious he needs both outpatient PT and PT in the school setting.

I do realize, of course, that my dramatic entrance entrance would have been followed by me spending the entire hearing wrestling Teddy, which wouldn't have been overly effective. Not that it matters because last week in mid-April is when the hearing decision upholding the denial arrived in our mailbox.

It took 4 months to go through the process to get told there's no way Medicaid will cover PT for Teddy through outpatient clinic while he's receiving it in the school setting ... but we could file a request for services now to see if Medicaid will cover PT during the summer since Teddy doesn't qualify for summer services through the school. (That's a whole other bucket o' slimy worms that I'm not going to dig into right now.)

Let me do the math. Mid-April plus 4 months equals mid-August. That's right when Teddy's about to go back to school where he'll be getting PT services again. And that means, they wouldn't cover services because it would be duplicate services.

What are the odds that Medicaid grants the request right away for summer? How much will my PT hate me if I make her go through all the paperwork and process all over again? Why do we have to wait so long to get an answer on therapy ... and why do we have to request services every 3 months or so? How on earth does OT get approved right away for Teddy (not that I'm complaining!)?

So for now, we say to heck with Medicaid. We're trying to work with our clinic to run his therapy services for PT through only our primary insurance, which theoretically will work to get Teddy the therapy that benefits him.

And we're hoping it works for speech, too, because we just received that denial. I'm not sure I have the wherewithal to go through that appeal process, only to have it denied with the exact same language as the PT hearing decision I have in my hands.

Teddy and the Easter Bunny

Teddy's not a big fan of costumed characters, so visits with the Easter Bunny in past years have involved tears. Well, this year with Teddy's increased mobility, he simply hopped off the bench and walked quickly away from the Easter Bunny at our local grocery store ... all while AJ tried to hold onto Teddy for a quick picture. The Easter Bunny tried bribing Teddy back with candy, but Teddy was not going anywhere near him.

I'm leaving now. Right now.

Even though Teddy may not care for the Easter Bunny, he was plenty happy to play with all the treats he got from the Easter Bunny. The Easter Bunny left him a cowboy hat at my parents' house, which Teddy finds fascinating. He's worn it far longer than I'd have imagined, and the strings are absolutely delicious. An added bonus is that AJ's only lassoed Teddy one time around the neck while practicing his roping skills ... thanks Grandma and Grandpa.

This cowboy was calling to say there's a new sheriff in town.

Then the Easter Bunny made a stop by our house with sand castle buckets filled with some treats for the boys. The Easter Bunny brought Teddy therapy putty, which is like Silly Putty. Teddy got two containers to try, and the rest are tucked away for later. It was a good opportunity to give him something like this to help with his fine motor development and give him some variety so he doesn't have just Play Dough to eat play.

The best trinket in Teddy's basket, though, was a bubble gun. It has a trigger like a gun, hence the name, and blows bubbles using battery power when the trigger is squeezed. It's absolutely perfect because for the first time Teddy can make bubbles himself. With us helping to hold the gun level (and keep it from getting tossed around when he gets excited), he can squeeze the trigger to make bubbles appear. It's an added bonus that he works on isolating his index finger, but it's so cool to see him excited to blow bubbles.

 

This was one of those holidays where our boys were thoroughly spoiled, but it felt good. There was time with both our families, including my nearly 95-year-old grandfather. There wasn't the frustration that Teddy couldn't enjoy the activities or the struggles to find something appropriate for him. Those are the good holidays.

Now ... if only we could get these children to sleep. Let's just say we didn't need to wake Teddy up to be to sunrise service at 5:45 a.m. He was wide awake at 4:40 a.m. I might have carried him downstairs and deposited him with Dave's folks saying, "He has risen."

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.

The Crying Mom

There are people who are cry publicly and people who don't. For most of my adult life, I've been in the group of people who don't cry. Working in Human Resources, I've had many tough conversations with people and pulled out the Kleenex box plenty of times for all those criers. There may have been a few times I barricaded myself in my office or had tears streaming down my face in my car as I drove out of the parking lot, but I was never the one to cry at work.

Quite simply, I took great pride in my ability to mask my emotions. Then along came Teddy. And that little bugger has ripped of that mask covering my emotions more times than I can count, including at his IEP this week. (An IEP is an annual meeting to review progress and determine goals and supports needed for the upcoming school year.)

We knew his IEP would determine where Teddy is placed for 4K next year. The options within our school district include traditional 4K classrooms, an integrated 4K classroom or an intentional 4K classroom. We also knew that a traditional 4K classroom is downright laughable for Teddy. The integrated class is co-taught by AJ and Teddy's teachers, with Teddy's teacher there to help modify the curriculum for those students who needed that support. The intentional 4K is the class for students who need such a high level of support, although they may integrate into a traditional class for brief periods as their abilities (and IEP goals) allow.

We knew Teddy's teacher would be able to make the best recommendation for Teddy to be successful because she's familiar with Teddy and how he does in a small setting as well as how the integrated classroom functions. We also knew that realistically the recommendation would be for the intentional 4K. I braced myself for this, having sobbed after hearing the options on the phone one day because I knew in my heart where Teddy would be placed. I psyched myself up on my run the morning of Teddy's IEP and felt comfortable with what his placement would be.

Yet, when the recommendation was made, I couldn't stop myself from crying. I thought I had almost managed to cover it up, wiping away a single tear nonchalantly, but then those tears kept coming. One of the therapists pulled my old move by quietly handing the box of Kleenex to me without judgement. I tried to joke saying, "I wasn't going to be that mom, but I guess I was anyways."

I could pretend that I was really disappointed because I wanted Teddy to remain at the same school with the same teacher (and AJ's teacher as well, who is great with him!) and most likely the same therapy team.

The reality is that, for me at least, it's really hard to hear that your child is so affected by his disability that he needs the most specialized instruction available. It's the same as when Teddy's teacher said it's so amazing to see Teddy walk and try to run across the gym chasing his peers. She said it's so cute that they wait for him to touch the wall before they run back across the gym, sharing it as a cute example of Teddy interacting with his peers. What I heard was that our son is so disabled that even all the other kids with disabilities accommodate our son.

And the fact is that none of this changes a damn thing about Teddy. He's the same adorable child who can disarm just about anyone with his megawatt smile and deep dimples. He's the one who amazes me when I realize the "mamama" that sounds like AJ said it came from Teddy's mouth. He's the one who still makes me do doubletakes when I see him walking with such relative ease and speed. He's an incredibly determined little boy who works so much harder than anyone else I personally know to do what he does with a remarkably cheerful attitude (unless we're short on sleep and refusing naps, which I'm not even going to touch today).

Seriously. That smile. Those dimples.

Nothing his teacher or support team said change any of this. And nothing they said was bad, mean or untrue about Teddy. It's just that hearing someone else point out reality, even in the kindest words, sometimes hits you hard ... because you live that reality and it's so familiar to you.

There is absolutely nothing bad about Teddy being in the intentional 4K. I know it's the best setting for him where he'll be able to make the most progress.

I guess I just need to find some superglue to keep him from ripping off my mask for my emotions time and time again.

"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.