I was sitting at my desk, writing a progress report for an insurance request, when I heard the familiar ding on my phone notifying me of a new message. Happy for the distraction, I turned on my facebook messenger to find this:
Of course, I immediately turned to my coworker to show her. After she agreed with me that he was the cutest kid in the world (to shut me up, I’m sure) and then she said, “That’s really awesome that they send you updates during the school day.”
And I replied, “Yes it is. I make it my mission to make anyone working with Brian my friend.”
This is the approach I have taken since Brian was first diagnosed at two years old. I’m a micromanager and a worrier. I can’t even fathom a life where I would send my child to school for the day and not know what he was doing. He can’t tell me when he comes home. He can’t speak for himself. By making friends with his techs and teachers I can feel assured that I will know if anything went wrong and I’ll also know of those wonderful little accomplishments he has every day, like kissing a goat.
Every night, as a family, we talk about our highs and lows. With these updates we can get Brian to participate. On this particular night we showed him the picture and we asked him if it was his high point. After a “Yes!”, we asked him what it was and he replied, “Goat”. We then said, “What are you doing?” and he said, “Kissing!!”. Hearing just those three words in a conversation mean so much to our family- all three of us were laughing and smiling with him. Without these updates we wouldn’t be able to hear those words.
Brian is also a puzzle. And no one knows him like I do. Sometimes he might be repeating a script at school. His teachers know that it must mean something. He is saying it with such intention while giving them eye contact. So they’ll ask me when I pick him up, or send me an email if it’s a day he’s going to his sitter’s. And I value that, so much. I value that they want to validate his every attempt of communication.
Having allies in the school system can’t even have a price placed on it. In years’ past when my son’s IEP wasn’t being met, it was those friendships I had established that let me in on those secrets. Unfortunately, the way this whole system works, is that you don’t always know if your son is going to speech for 90 minutes a week or if the sensory breaks you have listed in the IEP are being given or if your anxiety-laden child isn’t allowed to access the tools that are listed in his IEP. If your child is nonverbal and can’t tell you, you really have no clue. The school isn’t going to offer up the information that shows they aren’t holding up their end of the deal. (Thankfully, this no longer continues to be a concern, knock on wood)
And the most important and grim reason I have for establishing open communication and making friends with his teachers is the fact that I hope it will keep him safe. Children with disabilities, particularly ones who are nonverbal, are unfortunately at a much higher risk to be abused by people taking care of them. It seems like I see a new story every week in my newsfeed about some child being abused by the people the parents entrusted them to. A couple years back I remember when one of my Autism Mama Role Models went public that her child had been abused on her special bus. This was a Mom that is known nationally for her work in advocacy. I have her book sitting next to my bed for me to read over and over again. The fact that it happened to her child was a real wake-up call for me, that made me sick to my stomach. I can’t imagine anyone knowing Brian ever wanting to hurt him, but if they did, I would never know because he wouldn’t be able to tell me.
And of course, I just love getting distractions during my work day.