"No" on the Letter and Buzz, A Must Read

Lots of energy in our house.

Well, the principal and teacher do not want to pass along our letter to parents of children in Luke’s class because they feel it would “add fuel to the fire.” Some parents have actually complained about having Luke in the class and want him out. I’m not sure whether they are saying that Luke is disruptive or aggressive, but I don’t see either one as being an overarching problem in the classroom. Yes, I understand it might take time to deal with Luke, but it takes time to help a child who is struggling with reading or a child who is hearing impaired. Should we kick them all out? We wouldn’t have a class left.

So the principal told me that this letter would just make other parents more concerned that their children were being deprived, and that they wouldn’t care about my son’s rights to appropriate education. I really didn’t know what to say after that, so I just left it. I could find the class parents and deliver the letters on my own, I guess. Not sure what we’ll do next.

Next subject. I am reading the book, Buzz: A Year of Paying Attention by Katherine Ellison. “A hilarious and heartrending account of one mother’s journey to understand and reconnect with her high-spirited preteen son—a true story sure to beguile parents grappling with a child’s bewildering behavior.” –from Amazon

The mother and son are both dealing with ADHD, and I love Ellison’s honest and funny take on their life. And she explores every avenue of ADHD treatment that I’ve ever wanted to look into. I’ll let her visit Dr. Daniel Amen and get a brain scan so I don’t have to—unless she says it was worth it.

The book is fabulous. I read a review of it a while ago that wasn’t particularly glowing, so I didn’t rush out and get it, but I’ll tell you to rush out and get it. It may be that I relate well to their situation, but I think anyone dealing with ADHD can find some gems of wisdom and black comedy in there.

For instance, Ellison has a little epiphany about how her son’s behavior is exacerbated by his own stress and is not just a ploy to destroy her sanity—something I have to remind myself over and over again:

“Suddenly, he’s no longer my persecutor, the rebel lashing out against a weakened foe, the spoiled symbol of everything that’s going wrong with American youth, the painfully public proof of how Jack [her husband] and I have screwed up as parents.

“He’s just nine years old. He’s getting scolded at home, and teased, rejected, and reprimanded every single day at school. His mother is unhappy, her behavior erratic….

“On top of all this, he has just learned that he has something wrong with his brain.

“He’s scared. And he’s calling 9-1-1 for help.”

Do you relate?

A Letter to Parents in Our Son's Class

This is how he feels about everything except screen time and ice cream.

Parents have been complaining about the problems Luke is causing in class. So we decided to write a letter and ask the teacher to forward it to the parents. Don't know if she will or not. We'll see. I say that a lot.

Dear Parents,

Hi. Our son Luke is in your child’s class. Some of you are likely aware that Luke has been involved in some problems in class and on the playground recently. We would like to apologize for any hurt or frustration he has caused.

In addition, if you are interested, we would also like to take this opportunity to explain a little bit about Luke’s disabilities. We hesitate to tell others about Luke’s disabilities because we don’t want him to be negatively labeled or teased, but we hope that offering some information may help the situation. 

Luke has been diagnosed with attention deficit hyperactivity disorder (ADHD) and some behaviors of Aspergers Syndrome (this is often referred to as high-functioning autism). Though he often seems like a fairly typical child and does well academically, he has impaired impulse control, social skills, and sensory processing. He also has difficulty handling conflict and changes in his routine or environment and is still adjusting to moving to a new school.

We know that Luke’s behaviors can be antagonistic or immature. His skills have improved over time, but he still struggles to a degree that can sometimes be disruptive. Luke's challenges have helped our family learn a lot about getting along with people who are different or who have disabilities. They often have unique gifts. We hope you will see Luke’s presence as a learning opportunity for your child.  We understand there is a good deal of skepticism and misperception about autism.  We often don’t know what to think ourselves.  Though Luke’s disabilities can’t always be seen, we hope you can try to understand that his challenges are real, and no one feels them more acutely than he does. 

We work with Luke outside of school and receive great support from specialists at the school. The patient Mrs. Jones helps him track his behavior throughout the day. He is making progress, and we will continue to address any problems. If you think this information may be beneficial for your student, please feel free to share a basic explanation of Luke’s challenges. 

Thank you for your understanding. Please fell free to call us if you have any questions or concerns.

Have you ever sent a letter like this?

Focalin, Suspension, Help from the School District

New medication for both kids, so I’ve gotta keep track. It’s sort of unexpected that we changed medication. We have tried the kids on several things, and I felt that they were using what worked best. But then a little catalyst of change came up. In December, Luke was suspended for three days for hitting another boy in his class.

Got that call from the principal, “Mrs. Larson. There’s been an incident with Luke.” The first time I got that call, I was in tears. The second, I was really stressed. The third I just sighed and rolled my eyes. Kind of an "Oh boy, what now?" But it turned out to be worse than an eye roller.

So I met with the principal about the incident and got a lot more info. The kid had teased Luke and tattled on him. Luke had hit him--but he's no boxer. I worry more about his bark than his bite. It seemed that this meeting was really a "we don't know what to do with your kid" meeting. I realized that things were not going as well as I thought at school. Luke has a tracker that his teacher signs and sends home, and he was earning rewards almost every day. He did have some problems with other kids that the teacher had told me about, but things were definitely worse than I perceived. 

My husband and I met with the principal and vice principal again the next day. Things just seemed to get worse. They brought up the option of putting Luke in a Learning Center, which essentially means a smaller classroom for kids with behavior problems at a different school. We were shocked to hear that. DH about lost his mind and brought a law suit after that meeting.

The next day Luke, my husband, and I went to one meeting with the district “Safe Schools” administrator and another with the case management team. The people at the district were very understanding and helpful and reassuring that they wanted to help Luke and not kick him to the curb. But we did get the idea that they had gone a little overboard with Luke's suspension. They termed it an “assault.” And Luke had to sign a general behavior contract that I’d say is usually reserved for tough high school kids. It mentioned arson, theft, vandalism… Luke started to read it and said, “What’s sexting?” The administrator pushed the paper right up to Luke’s chest and said, “Just sign the bottom here.” Luke cuddled a stuffed dog in one hand and signed with the other.

So we were at one of those points of desperation where we felt like we’d do anything to help Luke and make the situation at school better. I asked our pediatrician Dr. Dave about trying different meds, and he suggested Focalin. We had tried it several years ago and decided against it since it made Luke sleepy but thought we’d try again with a super low dose. So we switched both Luke and Izzy and started with a very low 5 mg dose for Luke and 10 mg for Izzy. Izzy obviously needed more, and we gradually increased her dose to 20 mg. We then tried her on 27 mg of Concerta, which is also a methylphenidate, but she seemed to get a little over-the-top crazy on that. So we are sticking with 20 mg Focalin for both of them. I think it might be working better than the Vyvanse. But since this is all so subjective and mixed in with the emotions of a desperate mother and father, it is hard to know. We are also trying to figure out if they need a little short-acting, after-school dose.

More details to come on help from the school district, an in-class aid, school psychologist and special ed teacher changes, and finding an outside psychologist.

A great message for moms who are trying their best.