As I walked through the halls of our neighborhood school with my two, almost three year-old, along with his: wheelchair, walker, iPad and ACC device, feeding pump, catheter supplies, medicines and more, I said to his private duty nurse, who has also become my mentor and friend, “This is surreal.”
Then she wisely said to me, “It will probably feel like this at each of his milestones.”
Nathan is undergoing a week-long evaluation for special education services. He is in a classroom with several other preschoolers–some who have special needs and some who are neurotypical peer models. He goes to recess and lunch with them, in addition to being pulled out by therapists and a diagnostician to access his developmental and educational skill level.
His teacher and his speech therapist are so sweet and work together really well. It’s hard for me to not be in there giving them every little footnote on his adapted sign language and developmental skills. His nurse is there though and apparently he’s making friends. The five-year-old girls were swooning over him. I’m sure he’s eating it up. He’s been giving out kisses and waving like it’s his job. He also used his walker to walk right up to a play kitchen and start playing with the cups. There is so much for him to explore and so many new people to meet and observe.
To say that I’ve not had any anxiety around my baby going to school would be a big, fat lie. Mac was walking and talking by the time he went to preschool at the age of three. He was so verbal that I knew he could express his needs and wants, not only to the teacher, but also give me some understanding of what was happening in his classroom. It just felt time for him to go to school. With Nathan it’s a whole other story. I literally feel like I’m sending a baby to a great, big elementary school. So in preparation for this evaluation, I decided to put together a little notebook that gives the teacher and therapists more information about who Nathan is since he can’t talk for himself.
I found this family information notebook (FIN) online. It was done by the Children’s Hospital at Vanderbilt. I liked the way the sections were organized and laid out. Since I had no time to reinvent the wheel, I lifted the pages I needed for Nathan’s notebook. I simply hand wrote pertinent information on him as well as taped in some pictures. It was very low tech, but easy to do and, I hope, an effective tool.
I already know that it was somewhat helpful this week. On one of the pages I wrote that sneezing makes Nathan giggle uncontrollably. The teacher relayed this information to the little girls and he’s been laughing out loud lots.
I have no idea how to easily update this notebook from year-to-year but at least it’s a starting point. This whole world of special education is new to me and I’m learning as I go.
There are moments parenting Nathan where it’s almost like I step outside of my body and think, Is this really my life? Because nothing resembles how it was for 35 long years before he came along. I had such an able-bodied perspective on life. Now Nathan is changing that perspective completely. We all have strengths and weaknesses. It’s okay to need help doing some things. It’s okay to give help to others. Through all these lessons, I’m continually amazed by Nathan giving his affection to people wherever he goes and he is also the best observer of people I know. That is what he has to offer to others. Although next fall when he officially goes to school I know it will feel surreal all over again. It will be good and he will learn things. And I will too.
One more thing…
I should also tell you about Bob. Bob is posing in the first picture with us. He’s Nathan’s new wheelchair. He arrived at our house late last week and I can’t say we’re on great terms yet. He spends most of his time in the timeout corner in my dinning room. And I’m so tempted to relocate him out to the garage, but truly he hasn’t done anything wrong. In fact, it was really good for Nathan to have him at school this week. Clearly, I have lots of emotions to process about Bob. More on that later.
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
Also be sure to check out my list of Favorite Books on Disability!