A lot of times we find we are in the dark and looking for scraps of information about what is happening in Johnny’s life when he is not at home or with his family. Last night it would have have been nice to have been able to have the same experience as other parents.
This morning I put this letter in Johnny’s bag:
Last night we went to church for a family school advent service and arrived before 6:40pm but the section reserved for kindergarten students and their families was full so Johnny picked a spot to sit for all of us. When I realized that the kindergarten classes were singing a song as part of the service I was disappointed that we didn’t know that Johnny was suppose to be up there. I asked him if he knew the song and if he had been taught it and he said yes.
I’d like you to take moment in my shoes. Up until recently we were raising a child that was essentially non-verbal who relied on his parents to be his voice when he had no voice. We never knew what was happening after we dropped him off at preschool because he couldn’t run up to us afterwards and share moments with us. Instead we relied on other children for tidbits or notes from volunteers or teachers sharing a glimpse into our son’s day. Now he is an emerging beginner communicator but he still relies on us to advocate for him and the adults in his life to share what he still can’t. He never told me that the kindergarten class was performing just like he doesn’t tell me a lot about his day without me prompting and playing a guessing game with him until I stumble upon what was exciting to him.
Having Autism by nature separates you from your peers because of social skill deficits and its a challenge to view yourself as belonging to any group. That’s why I am not surprised that he didn’t grab my arm and get me to drag him to the front even though he seemed to know this was going to happen. That being said he must always be included with his peers and prompted to do so, so when he is older it becomes second nature.
Would Johnny have been able to sing the songs with the group of children in front of the church in front of everyone assembled? Would he have needed assistance? Probably and it might not have been easy but he did know he was not with his friends and was sad.
So as I sat in church as a Mom feeling a multitude of emotions that I normally don’t feel in church my little boy sang out very clearly and loudly with the people in the pews around us “Alleluia Alleluia Alleluia Praise The Lord.”
I am sure that what happened was unintentional but in the future just take a moment and remember that until Johnny can spontaneously burst up into the house like his baby sister and tell me some news, his Daddy and I are in the dark and we rely on professionals like you that work with him to enlighten us.
I am frustrated and disappointed but I am also determined to speak up and be even more louder for Johnny so he is not accidental forgotten or left out of experiencing something special with his peers. Now I have to take a deep breath and open up Johnny’s back pack and see what the school had to say.
*EDIT Johnny’s backpack had no reply note and I did not receive a phone call today either.