This week my Grayson was the “STAR OF THE WEEK” at his Montessori school. The star of the week gets to bring in pictures of themselves and their family. They answer questions about all of their favorite things. The star of the week gets a basket to bring home to fill with toys and books to show and tell to their classmates. When Grayson came home last week with the basket and the list of questions I was equal parts excited and nervous. You see, I imagine in most houses the parents receive the basket and ask their child to tell them what they would like to share with the class. And then the parents ask the child the list of questions and write down the answers. The parents may ask the child a few times throughout the week about their show and tell to help them prepare. They ask the questions and the child recites the answers. They pack the basket and send the child off to school. The child stands in front of the class and shares their toys and the information about their favorite things. Because by age 4 this type of communication is basis; it is ordinary for most children. Most children can tell their parents about their day. Most children can answer simple questions about their friends and about their family. Most children are able to communicate the things that they like and the things that they do not like. Most parents know what their 4 year old is thinking; because their 4 year old can tell them. Grayson struggles to tell us even basic things about his day. Sometimes we can look at him and see the frustration in his face. Frustration over not having the right words. Frustration over not being able to tell us what he needs or wants. Frustration for not having a voice; his voice. And so he works hard, harder than any child should have to work to do things as simple as communicate his needs and wants. Let me tell you a little bit about our “star of the week” and just how hard he works every single day…

On a Monday we received the basket and list of questions to be used the following Monday. My husband sent me a text message in the morning. I was instantly excited for Grayson; for this opportunity to see just how far he has come this year. I was also incredibly nervous; the kind of nervousness that has become second nature when we think about Grayson out in the world without us. Out in the world where we cannot help him; where we cannot control the environment. Nervousness in my desire for him to express himself; to share his toys, and a piece of himself, with his classmates. Grayson is such a passionate and expressive person and I was thrilled at the idea that he could share some of that in a special way with his class. You see just that morning at school drop off Grayson asked my husband if he could take his cars to school with him. Cars are the flavor of the month at our house. Which is fitting; since the car obsession started about 2 weeks after I sent out Grayson’s outer space themed birthday invitations. Outer space was last month’s obsession. For two weeks he has taken cars everywhere he goes. We keep the cars in a container and we try to introduce a little bit of self-control; sometimes limiting the number of cars he can take certain places. At home he can have all of the cars; but not during therapy. He can take 2 cars to bed with him, he can take 5 cars to the table with him. And, last Monday Grayson looked at my husband with his big brown eyes and said “cars, school?” Daddy reacted quickly and told Grayson that “no, we cannot have any cars at school, those are the rules.” Grayson accepted this answer without argument. In fact, he walked into the school and promptly told his teacher “no cars at school”.  So, I just knew that Grayson would be beyond thrilled to take his cars to school. I knew that if I asked him what he wanted to take to school to show his friends, he would not come up with an answer on his own. Even though he knows his favorite things, these types of questions are difficult to Grayson to answer. You see, that is not how Grayson communicates with us. We ask Grayson questions all of the time: “How was your day?” “What did you do at school?”, “What do you want to do today?” We ask these questions because we know in our hearts that one day we will get there. One day he will be able to answer these very broad open-ended questions, but we are not there yet. Instead we break the questions down to focus on smaller topics: “What should we do first; play outside or play a game?”, “Should we wear blue shoes or red shoes?”, “What are your friends’ names?” (to which he answers names of his classmates, names of his therapists, and sometimes in the most precious moments he answers “Rowan”; which melts our hearts into a million pieces). We ask him yes or no questions. Do you like cars? Do you want to go outside? Do you want a snack? Grayson answers the question asked in simple short answers. He does not expand. He does not elaborate. So, we build on the simple questions. We help him find a voice; one simple, direct question at a time.

So after I received the list of questions I did something that is very normal in our life; I reached out to our team. I emailed our case manager and our speech pathologist. I told them about Grayson’s “star of the week” presentation. I sent them the list of the questions. And, we made a plan; as we always do. We planned out how to talk to Grayson about the basket. How to help him fill it with the things that he loves. We spoke about the questions and the best way to help Grayson deliver the answers. Over the next week we would help Grayson prepare. That Tuesday night we had a late therapy session in the home; a session that usually contains a lot of interactive family time. During this session we brought out a solar system “do it yourself” model kit. The box said Age 7, so we were not sure what to expect, but we gave it a whirl. We turned it into a game. Grayson selected the color for each planet. And, while I painted the tops he copied me and painted the bottoms. He was so excited to see the planets together that we knew we could not wait for the paint to dry on its own. So, we busted out the blow dryer. He could not contain his excitement! He stood next to me covering his ears (loud noises like blow dryers effect Grayson) and bouncing up and down while I dried each planet. And then when they were dry we sat down at the table and worked together to assemble the solar system. Grayson matched the tops and bottoms and daddy helped place them on the solar system.  And when it was done Grayson had the biggest smile plastered across his face. He made his very own solar system! He could hold it and touch it and he loved it! That night the solar system went everywhere Grayson went. It sat on the toilet while he took a bath. It sat on the bookshelf while he watched his show. And it sat on his nightstand until it was time to turn the lights out and go to bed. The Solar System was a no brainier; it was definitely going into the basket.

The next night we worked on the answers to the questions. “What is your favorite color?” Green. “What is your favorite food?” Pizza. “What is your favorite toy?” Planets (go figure, after my anticipated car excitement)! “Who is in your family?” Mom, Dad & Rowan. “How old are you?” 3.

On Wednesday night we filled the basket with Grayson’s favorite things: the solar system model, some of his cars, his batman action figurine and his favorite book “Trains Go”. During the day on Thursday he worked with his technician and his speech therapist to prepare for the presentation. They did a mock run through and videotaped him so that he could watch himself. Grayson loves to watch videos of himself (as if anyone who knows me is even the slightest bit surprised by this). The technician who would accompany Grayson to school for his presentation also came to our house on Saturday and they did another run through of the presentation. He was excited and he was ready! We talked so much about our “star of the week” and told him that he would be amazing. On Saturday I had to leave town on business. I was so sad to miss my little star of the week. To miss the look on his face as he prepared his basket and headed off to school on Monday morning. As a working momma we miss so many little and big moments. And, it never gets easier. I hated to leave, but I knew that my little man would be amazing. So I gave him the biggest kiss and told him that he was always momma’s star of the week.

My husband and our team recounted the day of Grayson’s presentation with so much joy in their hearts! He woke up that morning so excited. He wore his “earth” t-shirt and packed up his basket. He chatted James’ ear off as they drove to school; smile plastered from ear to ear. I asked James to snap a picture of Grayson and his basket; however when Grayson walked in with the basket he was swarmed by his friends. He stood by as his friends came to the basket to see all of his things. He was so truly and genuinely happy. He answered all of the questions as he shared his toys and pictures with his class. His presentation was perfect…truly the star of the week.

You see in our house; Gray is the star of a lot of weeks. He works his little butt off. He does more in a day that should be expected of any almost 4 year old. He tries and struggles and pushes himself. He succeeds and he fails. He keeps his cool and he totally losses it. He is happy and focused sometimes and other times he is grumpy and distracted. But each day; he works so incredibly hard to be better. A better communicator. A better brother. A better friend. A better version of himself. Better and calmer and more patient and more focused. He is truly a star in so many ways.  He brings light everywhere he goes. He is always shining; always guiding our way. He reminds us that some things change and other things stay the same. Grayson teaches me that sometimes when things stay the same it is to keep us grounded; to remind us who we are and where we have been. There are certainly things about our journey I would change, but there are so many things that I would not. I look at Grayson at the end of most days with awe. I wonder just how is able to do everything we ask of him. I cannot help but think about the childhood I imagined for Grayson for the nine months that I carried him inside of me. Days filled with adventures inside and out; exploring and pretending and creating. My vision of his childhood did not include 25 hours a week of behavior therapy. Or, 3 hours a week of speech therapy. My vision did not include structured and monitored family play time. It did not include regimented and scripted brother play time. My vision was simple and carefree. And in my vision; Grayson was happy. When I look at our life today I realize that our life is many things I never imagined it would be. It is structured and scheduled and often not even the slightest “carefree”. But, it is also happy. It is filled with such an enormous amount of love. A love that I did not even know I was capable. And so maybe our journey is different than we expected, but as long as it is filled with love then I know that we are exactly where we are supposed to be, doing exactly what we are supposed to be doing. I love my little star of the week. And, I thank God for him every day.

JS

Gray’s display at school

Gray’s solar system

Gray’s basket of goodies!