Hello, My Name Is ...

None of us probably give a second thought about introducing ourselves. In fact, there's probably very few introductions that stick out in your mind. You might remember meeting someone new, where your friendship started, etc. but likely not the exact greeting.

You probably wonder where this is going, unless you read my Facebook post over the weekend. We visited a store this weekend, and I was wandering the aisles pushing Teddy when a sales associated asked if we needed any assistance. I replied, "No thanks, we're good," and continued browsing. She then looked directly at Teddy in his adaptive stroller (think mini-wheelchair without all the bells and whistles) and asked him, "How about you? Are you good?"

Right away, I was impressed that she took the time to engage directly with Teddy, who's clearly not your typical child. I asked Teddy if he could tell her yes, and he signed "yes" in response to my verbal prompt. And then I continued browsing because I thought we were done with the interaction until I heard the sales associate say, "My name is Ashley." I looked back toward her to see her signing what she was saying aloud.

I was shocked for a moment and gathered my wits enough to say that we're not quite that advanced in our signs yet, but that we know "treat" and "thank you." She said those were important words to know and encouraged us to find her if we needed any assistance.

Her introduction will stick with me for years. I was able to reach a manager at the store to let him know how much I appreciated Ashley's interactions. Not only did she engage with Teddy, but she was able to speak his language and acknowledge his answer. 

I think sign language is undervalued as a second language. I realize that so many have their own "slang" within sign language or their own way of signing when they aren't hearing impaired but are non-verbal. For example, Teddy uses the sign for candy for "treat," and realistically a lot of signs end up with Teddy pointing to his mouth where he wants the food to go. Still, we can understand him, and with continued practice, others like Ashley will be able to communicate with him as well. 

Thinking and Tinkering

We spent about an hour playing in the garage earlier this week, with Teddy showing off all his skills riding different toys for his grandparents and bossing them around by making the take turns sitting on the lawn mower. It was fun to slow down and watch not only his physical skills as he rode a tricycle, a scooter and a ziggle but also his fine motor and motor planning skills.

For example, he zoomed around on the bike, backing up to avoid hitting the garage door, steering around obstacles and handling it like a pro. He has learned to actually scooter on the 3-wheeled scooter that provides a bit more balance. (He also believes he can do the 2-wheeled scooter just fine for the record. That is terrifying to watch.) When we encouraged him to show off the ziggle, he went across the garage first to get a helmet, stuck it on his head and proceeded to chew on the strap and then hopped on the ziggle. Part of the helmet was loose and in his face, so he attempted several times to adjust it because he recognized it wasn't right. I'm not quite sure why the ziggle requires a helmet, but I was glad to see at least something triggered the need to wear a helmet.

Then Teddy decided that he needed to do repairs on the various bikes. He got the socket wrench we use to put the bike carrier on the Tahoe, took it to his trike and began manipulating it around the wheel. Then he moved on the the ziggle, flipped it over and started "working" on it.

This type of physical play, fine motor coordination and pretend play is all fantastic to see. It was a nice opportunity to relax and enjoy the progress that Teddy has made.

Grading a Child Like Teddy

I know I've talked about it before, but it must be incredibly challenging to grade a child like Teddy. He is held to the standards for other first graders, which means that obviously his report card holds the 1's you'd expect to see. Report cards now are 1 through 4, though I've yet to see a 4 yet even on AJ's report card. I tend to chuckle, or at least smirk, as I ready Teddy's grades because most 2's should be 1's, but I'm certain his teachers look for where they can squeak out a slightly higher grade because it must feel terrible to give a child all low marks.

I know teachers have a number of students to grade, especially those who teach specials like art, gym and music. But the comments they provide mean the world to AJ and truly hold the value for us as parents for Teddy more than any number.

I particularly love what Teddy's music teacher said about him. Even the use of the word "yet" leaves the option open that he'll master that particular skill in the future. She recognizes what he cannot do, but she clearly sees his joy for music and all he can do. And, trust me folks, for Teddy to actually stay in his seat through music class is a tremendous accomplishment for the child who cannot stay seated for a meal ... even though he loves food.

I truly appreciate Teddy's music teacher!

I started the year worried about how Teddy's teacher would handle Teddy and his classmates as he was new to that role. He exceeded my expectations and was everything we could have hoped for in Teddy's teacher: someone who saw the potential in Teddy, encouraged him to work hard yet understood his limitations, coordinated his supports at school and communicated well with us. We had daily communication from school, updates about big and little things. He was also willing to address Teddy's elopement directly, accept responsibility for the mistakes made and put in place a solid plan moving forward.

We were blessed with a great teacher for Teddy. 

Obviously with COVID-19, the school year ended much differently than we expected. I know school will look much different this upcoming year, and it's challenging to image what that looks like for Teddy's classroom, which is already rather unique and candidly a mixture of students with constant runny noses and a need to taste test most things, including things that aren't theirs.

For now, though, we'll celebrate the end of first grade for Teddy. There's one score that was missing from the report card, though, and that's the one for us as parents for surviving the end of school with remote learning. I'm not sure we quite deserve a 4, but we kept everyone alive, which is at least a solid 3.

Report Card Time

It's that time of the school year where report cards are distributed. As a child, I loved getting my report card and seeing my effort and accomplishments given letter grades. I liked to learn, and it came fairly easy for me, although I certainly had to put forth effort to earn my grades.

Ironically, I had fears when I became a parent that I would struggle with a child who didn't do well academically. And now I'm the proud parent of Teddy.

Report cards look a bit different now, using a scale of 1-4, with that mythical 4 being the highest. I've yet to see a 4 on a report card through second grade, despite having a child who can read all the words on the 5th grade reading test. I've seen plenty of 1s, though, as that's nearly all that Teddy's report card contains.

When I was a child, I was graded on both achievement and effort. Even when a child struggled with the material, a A could be given for effort if that child was trying to do the best work possible. There's no grades for efforts now, and Teddy's graded on the exact same metrics as every other first grader.

His report card wants to make me laugh and cry at the same time. I chuckle because how can he actually get anything more than a 1 for social studies? But I want to cry because it just seems mean that a child who cannot talk gets a 1 for his ability to sing. That isn't a fair category for a non-verbal child.

Report cards sting only for a day or two, the day we get them and the day of parent-teacher conferences. Because they're just numbers. They don't reflect the effort, work and true progress that Teddy puts forth and makes each day. I know that, and so does his team.

His music teacher clearly wanted to share some positive regarding Teddy, despite him receiving 1s for nearly everything. (He got a well-deserved 3 for interacting appropriately with music. It's a hoot to see that boy dance.) She said:

Teddy loves to participate in music class. He loves to participate by playing instruments and moving to the music. Teddy is always eager to take his turn. I never need to ask him twice to take his turn for any activity. He can hold all instruments with a strong grip from large drums to skinny mallet sticks. Teddy can play a steady pattern on percussion instruments, as long as it is a tempo he chooses. Teddy will continue to practice moving to music appropriately. He can perform all actions (pat legs, jump, touch toes, clap hands, etc..) with assistance at the start, but Teddy struggles to walk or march in a circle for more than a few seconds. 

I love how she focused on the fact that he's eager to take his turn, not the reality that he probably struggles when his turn ends sometimes. I also laughed out loud when she gave him credit for playing a steady pattern ... as long as he chooses how fast or slow he wants to play.

I reached out to thank his music teacher for her comments because it is clear that she wanted to share positive feedback for Teddy, and I recognize that it must be hard for his team to give him 1s when they clearly see how hard Teddy tries in so many ways. (They also see when he's stubborn and has no interest in following their agenda, so don't think I don't realize that.) She's a first-year teacher who's doing an amazing job (remember how Teddy was included in the holiday concert) and appreciated hearing from me.

We've often said that although we want Teddy to reach his full potential academically, we're far more concerned with him being loved, accepted and valued for the awesome child he is. He has that at his school, and we're extremely grateful.

Teddy's First Concert

If you've ever had the privilege to attend an elementary school concert, you know those performances aren't about the lovely singing (or shouting) qualities of the students. It's about how adorable they are while giving their best efforts and showing off their hard work. That's why it makes sense to include all children who are willing and able to participate, regardless of how well they sing ... or if they sing at all.

Teddy is non-verbal. That means he doesn't talk, and honestly doesn't make a lot of vocalizations aside from grunting when he wants something and laughing. He'll occasionally babble, but he's a rather quiet child unless he's supposed to be quiet and then somehow the non-verbal child is the loudest he could possibly be. But that doesn't mean he couldn't or shouldn't participate in his school's holiday concert.

This year was the first year that Teddy had the opportunity to participate in the concert. His teacher and the music teacher (and quite frankly all his support staff) worked with him the last several months, so he could practice the actions for the songs as well as work on the appropriate skills for a concert. His music teacher sent us the motions for all their songs, so we could have Teddy practice at music therapy as well. He spent a lot of time and effort practicing.

The night of the concert, he was extremely excited. I think he knew something special was happening, and he was wired when we got into the auditorium. Then again, so were a couple hundred other children who were bouncing off the walls. It was wonderful to see Teddy start bouncing up and down when he saw one friend in particular who's always sweet and kind to him. It was more wonderful to see her bouncing in her seat and trying to get Teddy to notice. She was mirroring his way of communicating with her, which was so neat to see.

Teddy was super excited for his concert! And super cute!

Teddy's teacher and aide were both there and excited to see him. His aide wasn't working with him that evening as she was supporting another classmate. Teddy's teacher was on stage with him, right beside him, to help him with the motions and make sure he stayed in place. Teddy used the walker he uses at school, not so much for stability as much as to create boundaries and the expectation to stay where he was. Teddy did an amazing job of staying where he was supposed to instead of wander the stage or making a mad dash to go crowd surfing.

Teddy may have been the only child who spent part of the performance watching the rest of his peers and clapping for them, but he was clearly loving being a part of the show. He did some of the motions on his own and many with the help of his teacher. There was even an entire song that the class only did motions rather than singing. The intention was to focus on rhythm, but it was so nice for a non-verbal child.

After the concert, Teddy came running down the hall (dragging his walker). He was so excited and happy, as were we. AJ insisted that we buy Teddy and his teacher both treats at the bake sale because both his teacher and Teddy did such a great job. AJ said that he almost cried happy tears because he was so proud and happy.

Mr. Skaaland is Teddy's amazing teacher!

There wasn't anything extraordinary about Teddy's performance. He didn't have a special part to play. He just got to participate in the fun, like any other first grader. And that was extraordinary.

Neuropsychological Testing ... Yet Another Thing I Never Knew Existed

I've always thought of myself as a person who is fairly well read with a solid vocabulary, but I quickly learned there's a whole lot of words I've never fathomed that I now know well enough to use accurately. Take neuropsychological for example. It sounds like a made-up word, like someone smashed two familiar words like neurology and psychology together.

But it's a real word, and today I used it in the context of Teddy having several hours of neuropsychological testing done at Children's Hospital in Milwaukee. Essentially, it's testing to evaluate where he is from a skills standpoint done through parent questionnaires, teacher questionnaires, specific activities to complete in person under the guise of play and then evaluation of  unstructured play with familiar faces. The purpose is to help us best understand Teddy, how to support him and to advocate for additional resources at school as appropriate. If I'm being honest, the last is probably my biggest hope, although there's some behaviors and the non-existent toilet training that were also discussed.

The testing went perfectly well today, as in Teddy was agreeable, in a good mood and typical Teddy. So his scoring should be accurate and give a good snapshot of who he is. He traveled well for the 3 hours of car rides for the appointment, handled the several hours of testing like a champ and even managed to get through the waiting room without making a spectacle of us. (Trust me, my level of acceptable social behavior for Teddy is much different than that standard for AJ, so we still get looks everywhere we go.)

But it was tough. I cried as I filled out the questionnaire I had to do today because it just sucks to see in black and white all that your child cannot do that others his age can do. I know it because it's our reality every day, but we get used to our reality and ignore the stark contrast. Filling out a form and checking only 3 boxes on a list of 25 or more items that Teddy can do is demoralizing ... and that wasn't even the communication page, which is usually the area Teddy lacks the most.

This is one of the many pages of fun forms. 

Hearing that he's made progress since he was tested almost two years ago is great ... except that progress still puts him at less than a 2-year-old average across the board. My goddaughter who turns two in February will pass Teddy in every skill by her next birthday, and that just sucks. It sucks because I know how damn hard he works for every bit of that progress, the 5 years of therapy it's taken us to get to that functioning level, the things we do every day to help develop those skills and how much I wish I could make life easier for him.

I don't want it to sound as though I'm in denial because we know who Teddy is and how severely affected he is with his CDG-PIGN. At the same time, though, hearing the words intellectual disability is like a solid kick to the stomach. It takes all my willpower to keep the tears in my eyes from rolling down my cheeks .... not because it's a surprise, not because I don't know that already, not because the doctor is mean, but because that just hurts to hear as a parent.

As parents, we want the best for our children, and sometimes it's so hard to understand how this can be the best for Teddy. That's why there's others who help us see the light on these tough days without them necessarily realizing it. My aunt came to visit as we were scheduled for several hours of testing. We got a brief visit, and she entertained Teddy while the doctor and I debriefed. And when I got home, still feeling down, I read her Facebook post (and stole her photo):

"A funtastic play date with Teddy this morning when he was here for his annual evaluation. I can’t describe the joy I feel to see his face light up when I walk into the room. He is a blessing."

The smile that lights up a room.

Some Days, It's Tough to be Teddy's Mom

I feel like I've said this before, but some days it's just tough to be Teddy's mom. Or dad. Or brother. Or grandparent. Or any relative.

He's such a darn lovable kid, who approaches life with reckless joy and lives in the moment. He's happy more often than he's not, unless you're trying to make him do something he doesn't want to do. Sometimes it's those are the moments that it's tough to be Teddy's mom when you're physically trying to peel a 50-pound child who's only a foot or two shorter than you off the ground when he's melted there like a pile of jello. That's physically hard and wears at your patience rather quickly.

The harder days to be Teddy's mom, though, are when it's not the behaviors that make things tough. It's the days that you have to confront that our life is so different from reality for many people. The worst of those are the seizures that put life on hold, terrify us and leave us all worse for the wear. But there are other things that have a similar, albeit less traumatic, effect.

We're pursuing neuropsychological testing for Teddy because we think it'll be helpful for his team at school as well as for us to support Teddy in the best ways at home. In a perfect scenario, we'll learn some things that will help to minimize those behaviors I mentioned above. We've been waiting for 4-5 months for this appointment, and the first portion was a parent interview. That meant I spent 1.5 hours walking through everything Teddy can and can't do. Unfortunately, there's a lot more can't than can when you're asked to compare Teddy to a typical 6-year-old child. I had to chuckle when the only questions that didn't apply to Teddy on the ADHD screening were the two that involved speaking ... only because he doesn't speak.

It might sound weird because clearly we know all the things Teddy can't do that a typical first grader can. But it's such a normal part of our life that most often we complain about things being hard, but we're still used to it. It's the times that you're forced to write down and tell someone else exactly what your child can and can't do that remind you of the thing you try to avoid focusing on: how different your life is from others, from what you expected.

But, I've filled out all the forms now, so I'll give the teacher portion to his teacher, collect that and continue on with life until we do several hours of testing next month. I'll hope for the best that day and then relive all these feelings when we get the results in black and white. Still, it's worth the emotional roller coaster for the information we should gain.

Just Imagine

Imagine, if you can, going through an entire day without being able to say a word. You can communicate anything you want, as long as you do it through staring at objects, physically directing others to do what is desired, clapping to show that you want something and pointing at objects.

How would you fare?

That's the thought that popped into my mind this weekend, and it's been lingering. I'd probably end up in tears within the first hour of the day. I'd likely give up attempting any communication, at least with certain people, once I'd exhausted their patience with me and my patience with them.

I can't imagine honestly making it a single day, even if I took out the challenge of a work day. Yet this is each and every day for Teddy. He handles what would drive me over the edge with remarkable grace, patience and forgiveness. Yes, those aren't often words I use with Teddy, but when I think of the challenges in expressing basic needs, much less wants, dreams and desires, he exhibits all those qualities.

At times, I lament how challenging it is for us as parents. Life is a constant game of charades, and we don't even know the category most of the time. But no matter the frustration we feel, Teddy by far has the shorter end of the stick.

The other week he was eating a grilled cheese sandwich and got up from the table and stood at the counter next to the fridge. I was about to redirect him to go sit down and finish his food when it suddenly clicked that he probably wanted another grilled cheese sandwich. So we showed him AJ's sandwich and asked if he wanted more. He clapped and pointed at the sandwich, which is a clear request. So we made him another grilled cheese and celebrated the victory of understanding his desire for seconds. I felt so proud of that minor victory, yet how many other moments have I completely missed?

It's amazing how much he can communicate with his limited means, and we'll continue to work with his talker and with sign language to expand his abilities. It takes time for others to get to know his methods, yet sometimes there's no doubt what Teddy wants you to do. Other things, like a second grilled cheese, require us to pay much closer attention to all the little clues. It's exhausting for all of us, yet exhilarating when we make progress in either communication or understanding.

Kindergarten Graduation

Today's the big day. Teddy celebrates his last day of kindergarten with his peers. Next year, he'll be in the same classroom with a new teacher as well as brand new first grade teacher and mix of first grade peers with whom he'll integrate and spend portions of his day.

This year Teddy has grown so much, both physically and developmentally. He's been welcomed into his school with open arms, and it's his version of Cheers. (Remember, the old TV sitcom?) Everyone knows his name.

He's had so much fun on his bus rides this year, with his beloved Ms. Lori taking him safely to school and bringing him home. She makes his bus rides so much fun that he usually pushes me away each morning, so he can get to the fun part instead of mom talking. She gave us a family fun pack for summer memories with spray chalk and squirt guns, along with the sweetest note. I think we might have to work out a park or ice cream date with her this summer because both boys adore her, and quite frankly, so do I.

I think I'll cry when Ms. Lori is no longer our bus driver for Teddy.

Teddy had a graduation ceremony this afternoon with all the rest of his kindergarten friends. I think my heart was so full it eeked tears out my eyes. It's been an absolutely amazing school year, and I'll leave you with these photos. The best is the video, though, showing off his skills, moves, his amazing para and the moment when he found me in the audience.

Teddy's teacher could barely manage a picture through her tears ... not of joy!

Teddy rocked his graduation with his kindergarten teacher!

All smiles for graduation! So much pride in those three smiles. 

King of the Party

Teddy crashed a Mardi Gras party at my work today. OK, he was invited because my co-worker wanted me to come take pictures. She offered to help wrangle Teddy (my word choice, not hers) to make it easier for me to say yes. This party was intended for the clients who we support, so Teddy was the only young child there. That didn't stop him from making friends and having a fantastic time. He alternated between wearing the awesome hat my co-worker got for him that was "Teddy proof" and trying to make other people wear it. (The hat was remarkably Teddy proof. He only lost one bell the entire afternoon.)

Such a cool hat!

Teddy though the table of beads was intended for his personal shopping. He walked away with several necklaces, most of which ended up around my neck by the time we left.

He loved that there was music and a designated dance floor. He didn't know whether to dance or just stare in awe, though, when people were blowing the party horns. It's so incredible to see him with his version of dance moves. Trust me, mine aren't much more sophisticated. It's not just the happiness and joy that music and movement bring him, but it's the coordination and all those years of therapy that enable him to do something like this that he likes with other people. He can actively participate instead of hopping around the floor wishing he could do what others are doing.

All in all, it was a fantastic afternoon. I got my bucket filled from seeing the incredible effort our staff put into this party and the enjoyment of all those who attended. Teddy was welcomed with open arms and was such a good listener (although he preferred my co-worker to me because she let him explore more than I would have).

Teddy modeling in the photo booth.

Teddy finished the afternoon by pushing the button to open the doors for people who were leaving. That was a compromise to him pushing the button and running outside away from me, so that's a win-win.

I did make Teddy promise not to tell AJ how much fun the party was since I downplayed it because I only wanted one child maximum to allow me to be somewhat useful. I'm confident Teddy won't say a word, and he brought home tons of beads for AJ.

Report Card

Last month, Teddy got his report card. Now, if you know Teddy, you know that although Teddy has many strengths, most of those are not items captured in the academic setting. (Heck, if you've read my blog before, you should know that.)

Report cards are different than when I was a child, at least for elementary school. The grading scale is:
4 - Advanced
3 - Proficient
2 - Basic
1 - Below Basic

I've learned from my experiences with AJ's teachers the past two years that 4's are simply not given at this age, so let's pretend the scale goes from 1-3 for purposes of this post.

First, let me say that I know from talking to Teddy's teacher that she strongly dislikes assigning grades because she recognizes that they don't capture the effort, skills and progress of the children she teaches. I completely agree.

Still, Teddy's report card made me laugh aloud. Most of his grades were understandable 1's because of the categories on which he's graded. He did get a 2 in science, though, for Earth and Space Science. How? Why? He also got a 2 in Health, which also befuddles me.

Now, something like gym, I feel his grades are more accurate. He got 2's across the board there, which is still really generous but balances his interest and efforts with his actual skill level.

Music was where I had to chuckle. He got a 3 for Engages Appropriately With Music, which I think is realistic. However, the poor kid didn't stand a chance for Singing. He got a 1. Seriously ... why would you grade a non-verbal child on a skill that requires verbalization?!?!

An accurate assessment of Teddy.

The one area that I felt fairly captured Teddy and scored things that make sense for Teddy was the life and career skills. He got mostly 2's, which is fair. He did get a 3 for Initiative and Self-Direction, and I don't think this is an exaggeration. Teddy has a lot of ideas, and he's persistent in following through on those ideas. Now, that 1 in Leadership and Responsibility goes hand-in-hand with that 3. A lot of Teddy's ideas are not responsible, but that doesn't stop him from pursuing them.

Now, if they scored him on adorable smile, he'd get a 3. Heck, maybe they'd even give him a 4 for those dimples.

Wires and Code

Last week AJ and I presented to his class about CDG and life with Teddy. AJ spent an hour making notes on things he wanted to share with his class, focusing on how CDG affects Teddy, ways people can communicate without talking and things Teddy does well.

I'm quite sure AJ lost his classmates when he talked about Teddy's code (aka genes), but I think they got my explanation that it's why some of us have blue eyes instead of green eyes or brown hair instead of blond hair. AJ also lost his classmates when he talked about Teddy's wires not being connected right. (That would be his neural pathways, folks.) But his classmates got the gist of the explanation that there's something that makes life different for Teddy, that he has to work harder to do things that are easy for them and that he's still learning how to talk.

I brought in Teddy's chair (almost as an afterthought) and backpack carrier. I explained that we use these because Teddy has trouble walking long distances and falls often, so these let us do lots of exploring or walk longer distances. I told them that carrying Teddy in the backpack let's us go hiking places where his chair can't go. (Although, trust me, we've taken his Kimba Kruze a lot further on trails that most people would and then just switched out to the backpack carrier. Seriously, who's going to steal a pediatric transport wheelchair 1.5 miles up a trail?)

We shared a picture of Teddy with the class to show his great smile since that was one of AJ's notes. AJ did a nice job explaining ways that people can communicate without talking, whether sign language, gestures or Teddy's iPad.

I tried to end our discussion that even though someone may not respond at the playground when they say hi or may not be able to do everything just like them, that all children want to play and have fun. I told them that even if a child like Teddy doesn't say hi back to them that they can still include that child in their game.

Twinning for a good reason.

Then we divided the class into groups to play charades. I put together simple phrases like "Hi!" or "I want to eat." to help the kids understand how they can send a message without talking. Some of the charades were really easy, and some were more difficult (and my group tried to cheat by listening to what I was telling the person who was acting).

I'm grateful that AJ's teacher gave us the time to share with her class. I know it's important to AJ to educate people about CDG because he wants to share his knowledge and that he loves to talk about Teddy. I like raising awareness of CDG, but I realize a group of kindergarten students isn't going to remember much about a particular diagnosis. My hope and goal is that it raises more awareness and acceptance of others who may be different. These kiddos will be AJ's peers and friends. Even though Teddy won't be at their school, I want them to be accepting of Teddy and all children with different needs.

And I couldn't be more proud of AJ. He loves his brother fiercely and advocates for him, even though he doesn't know that word ... yet.

"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.

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.