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. 

"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.

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.

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.

"I Don't Think Teddy Will Ever Talk"

"I don't think Teddy will ever talk."

That sentence from AJ while I was doing dishes stopped me in my tracks. Fortunately, Dave was home as well to help steer the conversation. We've talked about Teddy needing more help and using his tablet to help him make choices, but this was the kick-in-the-gut conversation that AJ is understanding Teddy is significantly different than him.

The topic came up again today when AJ asked why Teddy doesn't have the Pizza Hut reading program. I explained that AJ didn't have that program either in 4K. AJ proceeded to say that he didn't think Teddy would have it next year. He followed up with saying that he thinks Teddy should be able to read words like "a" and "my" already.

I paused for a moment to gather my thoughts before explaining that even if Teddy could read those words, we wouldn't really know right now because we're still trying to find ways to understand Teddy better. I said that we know Teddy knows some words, like bus, because he looks for a bus whenever we say that word. I said, though, it's hard to know exactly what Teddy knows and understands. AJ's response to that was, "Right. Because you can't read his mind."

I agreed and said that I wished that I could, but there's a lot of things we're learning to understand when Teddy tells us in his own way.

These conversations are tough. I struggle to find the right things to tell AJ to help him understand and make sense of Teddy's abilities despite his differences. I know part of the reason I struggle is because I still long to hear the words "I love you" come from Teddy's mouth ... and I don't know that they ever will.

He says that phrase when he climbs into my lap at meals (and drives me nuts in the process). He says that phrase when he flaps his arms and jumps when he sees me walk into the house. He says that phrase when he snuggles into me. He says that when he covers my head with a blanket and then peeks his head underneath by mine. He says that phrase with his joyful smile.

But that doesn't stop me from wanting the words.

And that's just the wistful part of me. The practical part of me wants to know when Teddy's hurt or ill, what he wants, what he knows and what's going on in that mind of his. As I told AJ, Teddy knows a lot more than we realize.

These will be the first of many conversations with AJ as he develops a full understanding of Teddy and comes to terms with it. He's beyond thinking that Teddy doesn't do things because he's a baby and will continue to question why Teddy doesn't do things that other children his age do.

On the bright side, despite these tough conversations, AJ is already an empathetic child who is extremely helpful. (He's the only person who's ever flossed Teddy's teeth. Not even the dentist attempts that.) He will be already is a better person for having Teddy as his brother.

And lest this post seem disheartening, I need to end it by saying that my phrase this week has been abundantly blessed. Dave has been gone all week for work, and my mom, who often helps with the boys when we need help, is in Hawaii. Our sitter offered to help with bedtime all but one night. My aunt came up from Milwaukee for a visit, took AJ to swim class and spent one night with us. Dave's folks came down to stay with AJ while I took Teddy to swim class (and originally planned to come both nights for swim class). My friends came for dinner one night, and one brought AJ a coveted Hatchimal Collectible. Our village is here to help us raise our children. We are indeed abundantly blessed.

Friends Make the World Better

This was a good weekend. There was nothing extravagant, nothing extraordinary and nothing that cost a lot of money to create a memorable experience.

But we spent time with friends. Both AJ and Teddy had play dates with different friends Saturday morning. We dropped AJ at his friend's house while Teddy's friend Max came to our house to play. I don't know that I'll ever get tired of watching Teddy and Max play together. My absolute favorite is when Max puts his face inches away from Teddy's face and makes Teddy giggle. Teddy fell over from laughing so hard at Max being silly this weekend. Teddy also finished Max's banana (yet again) because Max saw Teddy eying it up.

I think part of what makes these play dates so special is that I honestly hadn't expected Teddy to be having friends over for play dates. Sure, we have our family friends over for play dates, but that's not the same as Teddy having his friend over to play. Maybe I thought it would happen at some point down the road, but not at this stage.

And yet it has.

I swear Teddy is more talkative and babbles more when he's playing with Max. I also swear that it carries over when Max leaves. It's like it opens up Teddy's communication because he's so excited and having so much fun, and that muscle memory sticks around for a few hours or even days.

On Sunday we managed to get to church together as a family, which is a rare occurrence because sometimes it leaves us feeling more frustrated than fulfilled. Today wasn't one of those days. Yes, Teddy still managed to crawl under the pew and spent a good portion of Mass walking everywhere with Dave. But the folks behind us offered encouraging words to both Dave and I. There were moments where I had my arms around both boys that I wasn't trying to wrangle or contain them and felt contentment instead. There was a song after communion that really resonated with me even though I can't remember any of it at the moment.

Our day ended with our family friends coming over, along with another friend of mine, for dinner and cuddling the littlest babe. Their daughter is absolutely fantastic with our boys, so Teddy and AJ were entertained while us adults got a bit of time to catch up. And then we did silly stuff, like spin Teddy in our papasan chair and put an 11-year-old athletic girl on my back for a quick ride to show off our new kid carrier. (I will say that Teddy actually felt light when he climbed on after the 11-year-old child. Never knew that could happen.) The laughter, the conversation, the ease, the comfort ... everything is better with friends.

A Morning in My Life

As I was running errands with Teddy this morning, it occurred to me that we probably provide some entertainment for others when we're out and about. I thought I'd share our morning, so you can be entertained as well.

5:30 a.m. Dave wakes me up before he leaves for work, but he warns me I might want to stay under the blankets longer. The house was 54 degrees when he woke up for work, instead of the usual 67. It turns out that when Teddy hauled in the step ladder from the garage yesterday and was standing on top of it by the thermostat that he turned on the AC, so we had no heat running all afternoon or night.

He apparently knew he was turning off the heat, hence his coat.

6:00 a..m. I finish my 15 minutes of yoga and 7-minute workout as AJ comes downstairs. When he learns that he has a play date tomorrow morning at his friend's house, he suggests I invite Teddy's friend Max to our house at the same time. Hmm, good idea.

6:45 a.m. AJ feeds the rest of his French toast to Teddy, flying each bite into Teddy's mouth. I don't complain that someone other than me is feeding Teddy. (Not complaining about dinner either because Dave usually takes the lead on wrestling Teddy, who no longer wants to sit at the table most of the time.)

7:00 a.m. I text Max's mom to see if tomorrow works for a play date. It sounds like a possibility. 

7:15 a.m. AJ gets on the bus. Teddy can't wait for nicer weather when he can go play outside every morning until AJ gets on the bus because Teddy always stares out the window watching everyone else play. (I'm just not up to getting him all bundled up in snowpants and boots when both of us are still in our pajamas in winter.)

8:00 a.m. We've played magnets along with opening the refrigerator about 20 times. I don't find that particularly fun, but Teddy most certainly does.

8:30 a.m. We head up to Appleton for grocery shopping.

9:00 a.m. I struggle to get Teddy's feet into the holes in the shopping card. I blatantly disregard the weight limit and ponder if I'll need to take off his shoes to get him out.

9:15 a.m. A couple chuckles at Teddy holding a giant bag of pretzels while I try to store everything possible under the cart where he can't reach it.

9:30 a.m. Moment of truth. Groceries are out of the cart, and now it's time to remove Teddy. I size up the situation and decide I need more leverage than I can get from standing on the group trying to maneuver Teddy above most of my body. I put one foot on the cart corral and the other on the bottom of the shopping cart to lift Teddy out. Both his feet wiggle out fairly easily, and I'm quite proud of myself until I realize what that must have looked like to everyone else.

9:45 a.m. We're at the next store, and I just can't muster the effort to get Teddy into and out of another shopping cart. So I load Teddy on my back using a soft-sided carrier. Then I proceed to ask the first person I see to help me adjust the back of the carrier. I walk away telling Teddy that I have no pride left.

9:50 a.m. Teddy is excited to be in the carrier. I know this because he is bouncing up and down. That does not make it easy for me to walk with 46 lbs. of flailing on my back. At least he's happy.

10:00 a.m. I regret not grabbing a cart because I was only picking up one thing. I miraculously manage to carry two packages of chicken, two bags of salad and a giant container of olives in my arms with Teddy on my back.

Smiles, sunshine and sweat. He's heavy. ;-)

10:15 a.m. I call for the fourth time on a records request to get EEG discs to the National Institutes of Health. I discover that I need to call yet another place for one of the EEGs. I'm not happy with this since I've been trying to get these records since February 1.

10:45 a.m. We arrive at the library to pick up my books that are on hold. I always request books to be put on hold, so I can walk in, grab them and walk out. I know it's more work for them, but it makes life much easier than trying to find a particular book while wrangling Teddy. I put the carrier on but decide to be brave and let Teddy walk. He's much better than last time and doesn't try escaping multiple times. Success!

10:50 a.m. I hear back that my original EEG request is being processed and should arrive by the middle of next week. I feel much better than I got such a quick, positive response.

11:00 a.m. I unload groceries while Teddy climbs into the trunk. Then I put away the groceries while Teddy plays in the car and turns the key partially. Thankfully, he honked the horn loudly to let me know he was being a stinker, so I got the keys away from him.

11:10 a.m. I make Teddy lunch while calling on the other EEG records.

11:15 a.m. Teddy eats his lunch, partially while sitting and partially while wandering through the kitchen.

11:30 a.m. I change Teddy and make sure he's ready for school with his backpack, talker and coat. He puts on my vest and then makes me wear my vest. He's getting so good with zippers.

11:40 a.m. Teddy's van arrives to take him to school. He's so excited he jumps up when I open the van door. (He is just starting to be able to jump, which is so fun!) I buckle him in and wish the driver a good day.

11:41 a.m. Freedom! I have no children until just after 3 p.m.