Crying in my Truck
I was so hopeful when I took this picture. We were at the doctor's office in early January of 2016, starting down the road that I hoped would lead to the help Fire, and our family, needed. Fire got a clean bill of health for his eyes and ears and the Early Education Center scheduled an assessment for him in late February.
I never wrote about what happened in February because it was too painful for me. Fire had a full battery of tests and then a week later I met with the school's specialists. I thought I was there to start his IEP and instead I was told that while Fire scored low in all the areas we were concerned about, he wasn't low enough to qualify for any early interventions.
I was crushed, and felt lost and defeated. I remember sitting my truck holding my phone and trying to google "speech therapy for toddler" through my tears. I just broke down, friends. People who should have been there to help said there was nothing they could do and couldn't tell me what do do for Fire on my own. They told me that my son was fine when I knew that he was the exact opposite of fine.
We've come a long way since then, with the help of therapy and medication, and Fire is doing really well. He loves his school and they wonderful teachers and a caring special education professional who's reinvested in helping him succeed. He's making real progress in so many areas and that has made such a difference for me, and our family.
But the other day, I was back in the truck. I've never had a flashback until that day but suddenly there I was, barely able to see through my tears, feeling helpless and ignored. It was so real, I could see my phone shake in my hands and feel the desert heat surround me. I started crying and had to leave my desk. I couldn't believe that a little thing like re-reading an email could take me back there so quickly.
Over the summer, I sent a teacher an email asking to meet to discuss strategies for dealing with issues that might arise and accommodations that Fire might need in the class next year. I knew things would get harder for him as he progressed and wanted to make the teacher aware of that and to possibly put some accommodations in place to prevent any issues for Fire or the teacher. The email that I received back said, in part: "Looking forward, I really encourage us to let (Fire) forge a fresh path ahead, with us prepared to cross any anxiety bridges if/when we get there. In fourth grade we build up performance skills by doing a lot of confidence-building and low-risk activities, such as assigned buddy poetry readings for the class and performance assessments in pairs during semester 1 before we get to recorders in semester 2. Everyday in every grade, opportunities are peppered in to perform in class in small ways. Creating a low-risk and highly supportive environment is the foundation for which we create students who are confident enough to take (positive) risks in front of others, like you saw in the recent concert. Some of the students who played in Grade 4 on their own would barely speak to answer questions, much less play a solo a year ago. Music can be a great pathway to overcome performance anxiety and help students find their voice - maybe this is (Fire) if we clear enough hurdles while also giving him room to fall and pick himself up on his own a little. I think that space is critical. That can be challenging, but I think we saw this year he can rise to the occasion." I didn't feel that the teacher had heard me and approached the school counselor about it. She was surprised that I didn't think this response was sufficient and questioned why I would think that Fire would have trouble in the class.
Once again, people were telling me that my child was fine. That he could handle challenges the way "normal" kids could and that my experiences and input on his past issues had no use or value in their area. At the time I had enough on my plate getting ready for Earth's naturalization in Honolulu and sent the counselor and the teacher and email reminding them that Fire's main coping behaviors are shutting down, becoming unresponsive, and clowning for his friends and that might be misinterpreted as naughtiness or misbehavior rather than an indicator of the actual underlying problem (anxiety, auditory processing issues with instructions) and just put it out of my mind. All the big feelings this rejection caused came rushing back the other day when I had to reread that email conversation when I was forwarding it to the current special ed teacher. And why was I send it to her? Because these were the comments from the same teacher on his first quarter report card: "(Fire) ...frequently needs redirection to stay on task. Often seeks (distracts) other students or places self farthest away from the activity." And then it went on to give suggestions about how we can address this behavior at home.
I can laugh a little about it now but it still hurts. I said that I knew the class would be more challenging and that my child might struggle and shared what behaviors they may see if he is having a hard time. They didn't believe me, and guess what? Now we're going to have to cross that bridge that we could have avoided entirely if anyone had put any thought into how hard this might be for Fire. It's music class and they're working up to learning to play recorders. Essentially, a child who didn't speak in full sentences until he was 4, still struggles with making himself understood in English, has an IEP for memory and recall problems, and acknowledged anxiety disorder is being asked to learn a new language, both the written and audible forms, and to recreate the expressed version on command. It sounds like without any adjustments, they're setting him up for failure.
I'm thankful this is coming up now and that the special ed teacher at Fire's school is willing to sit in on the class to see how things are really going for him. Fire is going to be getting increased services in other areas so as a part of increasing the areas covered by his current IEP, there may be some accommodations recommended for music class as well. Fire loves music and did great when we had him in piano lessons before. He just needs someone who understands that he is wired a little differently and is willing to work with that. I'm hopeful that we can find a way for Fire to succeed and will keep advocating for him for as long as it takes.
This kid. This wonderful, hard, sweet, challenging, amazing kid.