Saturday, April 7, 2018

The Time Teddy "Helped" Make Cookies

My to-do list Friday morning included baking cookies to take to my dad as part of his Christmas present. (He gets to pick a homemade treat each month.) I managed to snap a few pictures of Teddy helping me bake the cookies.

I held a caption contest with myself when I posted these pictures on Facebook. Should they be called:
  • Reasons why my floor could be mopped every hour.
  • Anybody want Teddy to come help you bake?
  • This is why we have ants in our house in summer.
  • Teddy "helped" me bake cookies.
  • This is an HOUR of my life.
I ended up doing a combination of those, but without further adieu, here are some of the least blurry pictures of my helper.

I shall spread this flour I dumped onto the floor to celebrate my victory in wrestling the container from Mom.

Mom, I wasn't sure which pan you needed. I got them all out for you.

At least he's eating whole grains. And I now know he can open twisty ties. His OT will be so proud.

Perhaps he felt he was a bit messy that he should pull out fabric for me to make him an apron ...

This is his version of cleaning. His version also includes riding that little vacuum like a horse.

Wednesday, April 4, 2018

Swim Class Success

I know I've talked about how much Teddy enjoys the adapted aquatics class at our local YMCA. For whatever reason, the YMCA struggled to get sufficient volunteers this session, so Teddy's had a different "teacher" most weeks. But there's one young lady who has worked with him 4 or 5 times and is absolutely fantastic with him.

First of all, she's young and has the energy and strength to manhandle  or wrestle him away from the hot tub keep him safe the entire hour-long class. I feel really bad when it's one of the retired volunteers because I know I don't want to be solely responsible for Teddy in a pool for a whole hour.

Second, she's so happy. She always has a smile on her face, and she's perfectly willing to make goofy faces and sounds and play peek-a-boo with Teddy. This obviously makes her the coolest person ever ... or at least for the hour that swim class lasts.

Third, she gives Teddy more independence in the pool than I would. I would go so far as to say that I actually cringed a few times when I saw how far away she was from Teddy, which wasn't really far at all but was just out of arm's reach. But, this is a good thing for Teddy because he's still perfectly safe. (It's not like he doesn't swallow water when I'm holding onto him in the pool.) And it shows me that he can do more than I would have imagined.

That's Teddy cruising along the pool with his teacher following behind - hands off him.
Tonight I watched Teddy go hand-over-hand along the edge of the pool for probably 25 feet without anyone touching him or helping him. I saw him grab a pool noodle from the side of the pool and hold onto it by himself to start kicking toward his teacher. His teacher gives him the freedom to show off these skills where I don't have the confidence in him to even let him try.

I only imagine what he could have done in the second half of swim class if someone hadn't accidently pooped in the pool, causing an evacuation. At least Teddy wasn't that someone ... this time.

Monday, April 2, 2018

Easter Morning Shenanigans

Let's just say that Teddy was concerned it would take him extra time to find his Easter basket, so he got up early to make sure he had time to find it before 5:45 a.m. sunrise Mass.

That's the only logical explanation for him waking up at 1:50 a.m. and staying up for the day, right?

Nevermind that he didn't know he was getting an Easter basket. Or that he didn't care about looking for his basket that was right in front of him. Or that he didn't want to play with anything from his basket until he realized there was a giant chocolate rabbit, which happened around 3:20 a.m.

Think he's happy?
Now, most parents might not let their child eat a chocolate bunny at 3:25 a.m. Then again, most parents aren't awake with their child at 3:25 a.m. Nor have most parents been up for 1.5 hours with that particular child.

Those ears don't stand a chance against Teddy.
He enjoyed that bunny. He decided to start with the ears and then eat off the tail. His audience included me, Dave and Dave's mom. We spent a small portion of the night sleeping at their house to go to Mass with them. We spent a larger portion of the night playing in the basement with Teddy.

If this pattern of party all night when we're not at home continues every time we're not at home, I'm not quite sure what we'll do. (Curse and cry are givens for me, but those won't solve anything.) I'm not my best self when I get less than 4 hours of sleep. Teddy's not his best self when he only gets 6 hours of sleep, although he smiles a lot more than I do on that little sleep. We're still all a bit sleep deprived, so we're hoping for another restful night tonight.

He's lucky he's so stinkin' cute.

Wednesday, March 28, 2018

AJ's Plans

We spent most of today visiting my aunt in Milwaukee, enjoying the nice weather by playing in a few parks, picnicking, checking out the LEGO store (AJ's favorite) and riding escalators (Teddy's newest fascination). My aunt drove AJ to a few of the stops and learned about AJ's plans for when he turns 16.

He is saving his lemonade stand money to buy a vehicle when he turns 16. He is considering a Subaru Outback, which my aunt has with a push button to start it. He is also considering an Equinox, which is our latest vehicle. His last consideration is a minivan because he thinks they are really cool.

Then he will drive everywhere and take Teddy along on most of his trips, aside from a few vacations. 

"Mom, if you need milk, I'll go to the store. I'll say, 'Load up, Teddy.' Then we'll go get your milk. And maybe stop for a treat."

These plans were news to me. I'm sure they will change as he gets closer to 16 because I'm not so sure it's cool to drive a minivan ... or take your disabled brother with you everywhere. But right now I'm loving how much he loves his brother and plans to help in the future.

In fact, just yesterday when we were living it up at a swimming pool for spring break (after an hour of non-stop screaming to get there courtesy of an overtired Teddy), AJ said that he'll help Teddy in the swimming pool when he gets bigger. He will do that so that I can spend more time in the hot tub, of course. 

And when he wants to be, AJ is already a tremendous help. He got coats for both boys, along with drinks, and loaded the car today with those supplies and Teddy's blanket. Then he buckled Teddy into Teddy's carseat and suggested that Teddy might want a chewy tube for the ride. Seriously-all that from a 6-year-old.

AJ is absolutely the sweetest, best big brother ... when he's not head banging Teddy. 

Thursday, March 22, 2018

"Comparison is the Thief of Joy"

Note: This is adapted from an extremely lengthy Facebook post I shared earlier this year, and I received much love and encouragement in response. This really wasn't meant to be a complaint but really to focus on the quotation from the man who inspired Teddy's name.

Earlier this month we received Teddy's neurodevelopmental report from NIH. There's a lot of insightful suggestions in there as well as recommendations that will hopefully help him receive additional supports in the school system to best meet his needs.

Yet, part of that report includes different methods for scoring him for developmental age. Talk about a kick right in the stomach (or other more painful places). His highest score was in the low 2-year-old range, and that's only because he's fascinated with dragging around brooms, vacuums, snowblowers and lawn mowers. Seriously, his highest score was in something like domestic skills. Then there's things like his expressive language, which scored at a whopping 4 months.

Now, if I compare Teddy to others his age, I feel overwhelming sadness of what he cannot do that babies can do. I know, without a doubt, that my friend's 6-week-old newborn will pass Teddy within a year for language skills (and apparently quite a few other things). 





But this serves as a reminder not to compare. There is great joy in watching Teddy point to something he wants, in seeing him work his way into snowpants, watching as he presses the buttons to make his toys sing and observing him scale a ladder to the highest point and then wait with his big smile to see if we'll tell him to come down. No developmental screening can take that away ... but at least it might get him the additional supports that enable him to really thrive at school.


Tuesday, March 13, 2018

Why?

We had Teddy's Individual Education Plan (IEP) today to determine what supports look like for him in the school setting as well as objectives to work toward in the next year. I won't go into the details of the IEP because I'm saving my energy for the IEP meeting we'll have in another month or two that determines his placement and supports for next year because we have no idea where he'll end up next year ... but my money wouldn't be on the same school as AJ.

Anyways, here's the highlight of today's IEP meeting:

Teddy's speech therapist told us that last week he was helping Teddy climb a piece of playground equipment that was challenging for Teddy. The playground equipment has been a slippery lately, and this is a piece that Teddy struggles to climb ... at least safely. The little girl who was climbing ahead of Teddy turned around and started to ask "Why ..."

Teddy's speech therapist was expecting the child to ask something about what Teddy cannot do or the challenges he has. He said he thought she would ask something like "Why does Teddy need help?" or "Why can't Teddy do this by himself?"

Instead, the girl's question was, "Why is Teddy always so happy?"

That, my friends, makes me happy.

Sunday, March 11, 2018

5 Servings of YUCK!

When we met with the dietitian at NIH, she nicely encouraged us to work on Teddy eating vegetables, limiting juice and reducing the amount of treats he eats. I wish we could redo that meeting now because what I could tell her now sounds much better than what I told her 6 weeks ago.

Then: Umm, yeah. The only vegetable he eats is potato in the form of a French fry and ketchup, which is technically made from tomatoes. He'll eat spaghetti sauce, too, but that's about it. He eats a lot of pancakes. And waffles. He once ate at least 6 pancakes for breakfast in a single day. What? This milkshake. He's been having milkshakes every day here because he's so traumatized.

Now: Oh, Teddy quite a few vegetables. He loves pancakes and waffles, so he eats all whole-grain pancakes with either added wheat germ or pumpkin. The waffles he eats for snack are whole grain with zucchini. He also enjoys zucchini as a treat in a whole-grain zucchini cake with extra anti-oxidants (a.k.a. cocoa powder). Aside from those vegetables, he eats broccoli and cauliflower tots. We also add pumpkin into our spaghetti sauce to give him an extra nutritional boost. He will drink a green juice as a treat that has additional minerals and herbs. He'll occasionally drink a green smoothie with avocado and spinach, along with chia and flax seeds.

Zucchini waffles. Approved by Teddy.
I realize Teddy still doesn't love vegetables, but all it took was someone pointing out the obvious that Teddy still needs to get those vitamins, minerals and nutrients from vegetables for me to think creatively enough to get him eating vegetables.

Now, don't get me wrong. The kid still ate ice cream today. And a piece of cake, but at least the cake had bananas and whole grain flour. But, we're making a conscious effort to incorporate vegetables and things like wheat germ, and it's working. A huge thank you to Lindsay for suggesting the broccoli tots. He may eat the cauliflower ones with ranch dressing, but at least he's eating a full serving of vegetables in a meal.

He still eats probably more pancakes and waffles than he should. But at least they're all whole grain, and some have pumpkin or zucchini, depending on which bag he grabs.

This kid loves his pancakes and waffles!
And on the really bright side, this morning when he opened the freezer door, I told him to wait to make a choice. He shut the door and waited for me. I grabbed his talker and gave him a choice of waffles or pancakes. He choose pancakes, so I gave him the bag of pancakes to take one. He took the whole bag to the table and sat in his chair. He then proceeded to eat 2 to 3 of them, but at least he sat on the table. There's a lot of wins in that story.