When Ford was first diagnosed with SMA at 4 months old we were told that he would never go to school. It was a milestone out of reach when the doctors tell you your only child will survive to be a year old, maybe two. Ford is now 6 years old and proving the odds wrong. He is just like any little boy who loves all things superheroes and being outside. When we knew that school was going to be an option for Ford we had to think of how he could participate and be a part of a classroom but also remain healthy. I want nothing more than for Ford to be able to actually be in a classroom with his peers but for us it just isn’t the safest option in keeping him healthy. Ford has been sick two times in his life and both of those times landed him in the hospital intubated. We want to give Ford all the experiences we can, so we are always looking for the safest way and that included going to school.
So how was Ford going to attend school and remain healthy? This journey began by starting a process to get Ford a virtual presence also known as a “robot” called the VGo. I started talking to the VGo reps about the steps we needed to take to introduce this device to Ford’s school. I began working with the superintendent and special education teacher at Ford’s school making my case as to why the VGo would be the top option in giving Ford the best possible educational experience. We tested out a couple virtual presence options all the while I never wavered from the idea that Ford needed the VGo. So we just had to wait for the school district to make their decision.
Before the beginning of the year we had been given the good news that we had come to an agreement with the school that Ford was going to be using the VGo. The VGo would be a virtual presence that would be in the classroom for Ford while he would be at home on the other end of the computer. Once I knew we were getting the VGo my excitement for the year grew as I knew it was a tool that was going to make Ford’s education a wonderful experience. The first day of school came and my nerves were back in full swing. Would kids accept Ford, would they really see him as part of their class? The questions in my mind were endless. Would my idea of inclusion really be a reality for Ford in Kindergarten?
We are almost to the end of the school year and Ford’s Kindergarten experience has been far beyond what my expectations were at the beginning of the year. Ford has been a part of every aspect of every school day all year long. He participates in all the academics throughout the day as well as the special events. He attends three specials throughout the week, (Art, Music and Library) as well as field trips. Ford attends school Monday through Friday all day only taking a break while the kids go to lunch and recess. Ford currently doesn’t attend recess because the VGo wifi signal will not reach outside the building, but this is something we are hoping will be resolved for the start of first grade.
Ford has built relationships with his classmates and has academically progressed amazingly throughout the year. I know there are so many parents of other SMA children who strive to be able to give their child the best school experience and for us the VGo has been the vehicle to make that happen in our child’s life. Ford’s teacher makes sure that he is apart of everything that they do at school. She sends home folders for each day of the week with all of the materials he needs to follow along during the school day. He participates in all the academics and does his homework assignments the same as his peers. Ford is also held accountable for answering questions like his classmates, taking his turn at the board and following along with stories or worksheets that need to be completed. I love that he is being held to the same standard as the rest of his peers. Ford is not able to do things on his own so with my help, or assistance from one of his nurses he is able to fill out his worksheets, write his sentences, or flip the pages of the books we are reading. Every activity his classmates are doing Ford is doing the same. We are constantly asking Ford “yes/no” questions to get him to tell us answers and make choices. He identifies his site words and is expected to answer “yes/ no” questions when it is his turn.
Ford is assigned jobs throughout the week too, just like all the other kids. You never know if your stick will be pulled for a job but Ford loves them all!! He has been Calendar Helper, Teacher Helper, Pet Feeder, Line Leader and Office Helper. Ford takes his job very seriously whatever it may be. He loves snack bunch time. It is an event during the day when Ford gets to learn more about his peers and they about him. Mrs. Sharek created snack bunch as an opportunity for Ford to create and develop better peer to peer relationships with his friends. Ford usually enjoys a snack at home while his friends eat theirs at school. Ford also loves Fridays which is “show and tell” day!!
(taking morning papers to the office)
(Show and Tell)
Ford loves all aspects of his school day and he really started to create some amazing friendships and bonds with his peers. I find that the VGo is the instrument that has allowed those relationships to grow and strengthen. The VGo permits Ford to be present within the classroom by “physically” being there,and the kids look at the VGo as Ford not a robot. At the beginning of the year Mrs. Sharek talked with all the kids about the reasons why Ford is unable to attend school and that doesn’t seem to matter to them. They don’t see Ford’s disability, they just see Ford. Kids hearts are so big and the greatest emotion they show is love. That’s the amazing thing, they love to Ford and embrace him on a daily basis. As soon as we call in for school in the morning the kids are all ready to say, ” Good morning,” to him. They fight over who gets to walk with him in the hall, who gets to sit next to him, who gets to partner with him. Its an indescribable thing to witness children just be that, innocent and non judgmental children.
The VGo also has allowed Ford to be part of special days at school. This is one thing that changed coming into school this year. In the past if we had Skyped into a classroom someone had to be there to help “hold” the Ipad. The VGo opened the door to Ford to be more independent throughout the day being able to move freely through the classroom and school with only the help of me or one of his nurses at home. We drive the VGo on our end from a computer. The VGo doesn’t interfere or give the need to interrupt the rest of the class to participate. Ford’s class has had several special days at school and Ford has loved every single one.
(Johnny Appleseed Day)
(100th Day of School)
(Breakfast with Santa)
(Pictures with Santa)
(Picture with Easter Bunny)
(Movies at School)
Another thing that the VGo has permitted Ford to do is participate in Field trips. This year Ford got to attend a Royal Ball at a castle as well as a day at The Children’s Museum. We connected to the Wifi at both locations and this gave Ford two more amazing experiences. Ford had a blast dancing with some of the girls at the ball and had an awesome time exploring all the rooms at the museum. The VGo has given Ford the chance to be accepted as just one of the kids, a hashtag we always use when posting pictures of Ford and his classmates!!
So I am so hopeful for what the remainder of Ford’s educational experience will look like. The VGo has been an incredible tool this school year but the real experience has been the relationships Ford has built with his peers and Mrs. Sharek. It takes a special teacher to have a child like Ford in their class because its more than just teaching. Mrs. Sharek has done nothing but accept Ford and the journey of him being one of her students from day one. She honestly has crushed it when it comes to giving Ford opportunities and experiences. The VGo is amazing, but I feel that is is Mrs. Sharek who has given Ford the chance to reach his greatest potential in Kindergarten. I am so excited to continue to see Ford grow as a child as well as a student. I will continue to thank Riverside School District for believing in Ford enough to give him the opportunity to attend school using the VGo. In my eyes it was the best decision you could have ever made! This is what real school inclusion looks like and I am so proud that this has been our experience.
I hope that through this blog we can help advocate for other SMA children and their families to get+ the VGo or whatever virtual presence you feel is the best fit for your child. I personally know that Ford’s education would not be the same without the VGo and we are so excited to see where first grade takes us next year. Here we come Kindergarten Graduation!!!