Guest Post: Big Brother

This is a guest post by AJ, Teddy's older (and awesome) brother. He wanted to share his perspective on life with Teddy.

Hi, I'm AJ. I'm Teddy's older brother. My favorite color is blue. My favorite animal is a penguin. My favorite books are from Dr. Seuss. My favorite foods are from my mom and dad.

Living with Teddy is sometimes frustrating, but we try to work around it. It's fun to have Teddy around, but sometimes he gets into a lot of trouble because he thinks everything is safe. Unless it's not safe, then he just does it for fun.

Working with Teddy is hard at the same time as easy. Playing along with Teddy gets really easy. Sometimes playing with the neighbors with Teddy is hard because sometimes the neighbors don't get along with Teddy.

Teddy has a three-wheel bike with a handle to direct him in case he goes running toward a ditch. Otherwise, he's a good peddler and is kind of safe on his bike. But he aims for ditches.

Teddy's birthdays are really special for me because it's my younger brother's birthday, and it seems special for me to be his older brother.

My favorite thing about Teddy is his joyful little smile and his playful moods. I don't like when Teddy is a little too aggressive and kind of hits or kicks sometimes. But that's only once in a while.

I wish that Teddy could talk and tell us everything about himself. It would really be cool. I also wish that Teddy wouldn't have seizures because it would make life a lot easier not going to the doctors at the ER. But those wishes will probably not come true.

Brothers and goofballs. 

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.

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.

"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.

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.