Getting to know Charlotte

Last evening I attended the Newtown Kindness Awards Ceremony in Connecticut. But before I tell you about the evening, I want to rewind here for a bit: I Googled to learn who Charlotte Bacon was on December sixth, when I received an email about Tate’s nomination for the Charlotte Bacon Kindness Awards. I did not learn much about Charlotte’s life when I searched the Internet but I did see stories about her death. However, last night I got a pretty good feel for whom Charlotte really was. I now know she was funny and sweet and often involved in mischief. I know her favorite color was pink. I know she wanted to be a vet some day, she loved dogs, and had a collection of stuffed dogs. I know she was loved by many people and adored by her own dog named, Lily, whom she loved in return. All evening I kept thinking, “She sounds a lot like my Sydney.” They would have been friends had they known each other.

Although I did not know who Charlotte Bacon was, ironically, I could recall the name of the young man who took her life. How wrong is that? The reason I remembered his name is because three years ago the media covered the story for days, plastering his name and face everywhere and alleging the reason he committed the horrible act was because he had autism. Our family is affected by autism and when autism is in the media it gets my attention. How much better would it have been for the media to remain very quiet about the name of the killer and  instead be covering the kindnesses that have happened as a result of that incident? I now know there have been many. You might like to read more about Charlotte and the Newtown Kindness awards here: http://www.newtownkindness.org/who-we-are/meetcharlotte/

Charlotte’s parents would like her to be remembered for her life, not her death. To honor Charlotte’s life and to keep her memory alive they celebrate her birthday every year in an amazing way. They recognize children for their acts of kindness. Tate was nominated for a kindness award with his friends Ethan and Jordan after I wrote a thank you note to those boys and their classmates for their friendship with Tate. That thank you letter was published, and People Magazine did a story on the boys and the lunch buddy program. That article got the attention of a nice lady named Lara who nominated the boys for the award. Although thousands of children were nominated, only around forty were chosen to receive awards.

On stage

Seeing Tate standing on the stage tonight was such a proud moment for me. But, it was not only about the kindness factor. Tate has autism and before the ceremony began Tate was anxious. Tate has a lot of sensory issues and he was aggravated because I had dressed him in a shirt he did not like. He was annoyed because I had made him leave his treasured hoodie and cap at the hotel. He had just found out that his beloved watch was an hour off due to the time change, but he couldn’t decide if he wanted it on Connecticut time or Kansas time. And to top it all off, I could not tell him exactly what to expect or give him a solid timeframe for the evening’s events so he was nervous. Needless to say, Tate was stimming. Tate’s stims (stereotypic behaviors) can cause him to appear pretty odd to people who do not know him or understand autism. He grimaces and stiffens his arms and he talks about movies. For the hour leading up to the ceremony I must have heard several dozen times that the movie “Home” comes out March 27^th in theaters and Tate reviewed with me who does all the main characters’ voices. Then he would rotate something about “Big Hero Six” and its DVD release date into the mix. I had resigned myself to seeing Tate stand on stage and stim. I knew everyone would be understanding. After all, we were in an auditorium with four hundred people who were promoting kindness. But, I still reassured and coached as best I could, hoping he’d be able to pull it off.

Shortly before the ceremony, he decided it was okay to “borrow Connecticut time” for his watch. That helped. We took a walk and got a drink of water. That also helped. Then I asked one of last years winners, Ryan, a very kind young man who we’d just met, to tell Tate exactly what to expect when he went onto the stage. That helped too. And, because we sat in the audience and listened to some great music for thirty minutes before he had to take the stage, Tate was much more relaxed when it was time for him to receive his award. He appeared calm, cool, and collected, and sauntered right out onto that stage like he owned the place. No one would have suspected that ninety minutes before he had been a wreck. And that is one of the reasons I was so proud. The amount of courage it took for Tate to go out on that stage was tremendous compared to most. But then, Tate is used to doing those things that come easy to the rest of us, while fighting all kinds of battles that we cannot see. The feel of a shirt, the insecurity of leaving his cap behind, the noise level, and dealing with people whose expectations are a mystery to him, are all things that make getting through the day so much more challenging to Tate. But he just keeps stepping up, trying to please us, and do the things we ask of him. He only had a limited understanding of what the award last night was about and he would rather have been watching television at the hotel but he did what I required of him and he did it well.

Getting Ready for the ceremony

You might wonder why I thought it was important for Tate to be at the awards ceremony and accept the award on behalf of himself, Ethan and Jordan. Tate did not raise money for a great cause, he did not donate food to the homeless, or do any of the other great things many of the children there had done. Tate is making a difference in other ways. Tate is showing kids with autism and their parents that friendship is not an illusive goal but something that can really happen. Tate has friends in Ethan and Jordan and several other children at his school. It took a lot of hard work to make that happen. The lunch buddy program was one of the key ingredients in creating Tate’s friendships. That can happen in other schools too!

Jordan, Tate, and Ethan

Ethan, Jordan, and others have sacrificed a lot of time and effort to teach Tate social skills and in doing so they had learned some things from Tate as well. The truth is: Ethan and Jordan were nominated for this award and did not want to accept the nomination unless Tate was included. Lara recognized the fact that Tate was not the only benefactor in their relationship and included Tate in the nomination at his friends’ request. I wanted Tate present to accept the award and help spread the message that kids should extend kindness to everyone, including their classmates with disabilities like autism. I wanted Tate present to accept the award and help spread the message that kids with autism can learn social skills, be kind, and make friends in spite of their disability. Ethan and Jordan had worked hard, but when it comes right down to it, so had Tate. Things that come so natural to the other boys are very hard for Tate but he is doing them!

Tate's Medal

I could have let Tate decide whether or not he came to Connecticut to accept the award, and we would have stayed home. After all, it was HIS award. But if I let Tate decide, he would rarely leave the house for anything. He would not have developed the skills he needed to be a friend or have a friend! I have to constantly remove Tate from his comfort zone and his comfort zone just keeps getting bigger and bigger, despite autism's best efforts to limit Tate. If you are a parent of a young child with autism reading, please understand: Keep pushing. Keep advocating. Keep mentoring. Do NOT stop. Do NOT allow your child to choose what is best for him or her. Do not allow autism to decide what is best for your child. This is hard work but the stakes are so high! Take it from an older mom with a boy who has done (and is doing) the hard work, it pays off!

I am very thankful for Charlotte Bacon’s life and her family. I am thankful Charlotte is being remembered in this way. I’m so honored Tate was chosen to receive a kindness award, and I’m determined not to forget Charlotte. Many thanks to the Bacon family for making the world a better place. The impact they are making is extraordinary. They will probably never realize the impact they have had on my life.

This is the article that led to Tate's nomination: A Lesson In Kindness by People Magazine

Building Tate's Friendships

People are so amazed that my son with autism has friends and I get that. I marvel at it myself. The very description of autism is about as far from the word “friend” as a person can get. Words like: aloof, detached, and indifferent, are descriptive of autism, right? So how can a kid with autism have a friend or be a friend?

Below are the components that were used to create the friendships Tate has. This may not work for everyone with autism but these are the things we did.

Kiindergarten

Inclusion: Tate was in the classroom with typically developing peers for most of his day in grade school. His peers became very familiar with his behaviors and his needs. In Junior High Tate spends a lot more of his day in an individualized education setting because he works at a much lower grade level than his peers. However, the relationships developed in grade school are still being nurtured often in various settings.

Education: This one is HUGE. We never hid Tate’s diagnosis from his peers or their parents. When Tate did things that seemed odd the kids could ask questions and they were given age appropriate information. I asked Tate’s teachers to read books about children with autism with their class. When people are given correct information and educated they are not left to come up with their own version of the truth. Tate was never thought of as “weird” because his classmates and their parents were educated about autism.

Social Skills Coaching: Tate had full support at school. An adult was constantly giving Tate instruction in social skills. On occasion, members of Tate’s IEP team would suggest Tate did not need support on the playground but instead needed free time (which would have been used by Tate to pace alone and stim). I insisted the playground was a crucial time for him to receive coaching. This playground coaching played a large part in developing friendships. Tate was pushed to play with peers and peers were encouraged to include him in games and to give him support themselves. The Paraprofessional was able to stand back and watch as the other children engaged Tate in play sometimes.

Lunch Buddies and Other Social Skills Programs: We had organized social skills programs for Tate. The speech teacher came into Tate’s classroom twice a week in the early grades and organized board games and other activities for Tate and a few peers to engage in together. She coached the peers on how best to interact with Tate while she was coaching Tate on how to behave appropriately. We started a lunch buddy program in second grade and it was invaluable. Today, social skills are still a part of Tate’s daily education.

An Advocate: Many of the programs and supports Tate needed to develop friendships would not have been put in place had we not hired an advocate. She occasionally observed Tate at school, made recommendations, and always came to our IEP meetings. Our advocate was more knowledgeable about autism and the law than many of our IEP team members. She could often provide data to support her reasoning and she requested and received things for Tate that I had never thought to ask for. An advocate is very expensive but ours was worth every penny. Note: If you cannot afford an advocate my advice would be to get a Wright’s Law Book and study.

Tate and his buddy Jordan
Sixth grade

Willing Peers: Without kind, willing peers Tate could not have friends. We had willing peers with compassionate parents who allowed their children to be pulled from other activities occasionally to be peer models for Tate.

Tate and his Paraprofessional Richie
Fifth grade

Teachers Who Were Vested: We have had some rock star teachers involved over the years. Not every teacher was willing to work hard or believed in what we were doing but most did. The speech teachers have usually been the ones to drive the lunch buddy program for us but others have helped too. Tate’s Paraprofessionals had to shoulder the majority of the responsibility much of the time as they are the ones who spend the most time with Tate. They reinforced all the social skills lessons into all aspects of Tate’s day. Without all these hard-working adults we would not have gotten far.

Parents Willing To Work: No one’s involvement is more important than the parent. We badgered administrators and teachers for programs we thought really mattered and we were not afraid to ask for things they had never done before. We paid for an advocate. We provided books about autism and social skills to teachers. I dropped donuts off at the school occasionally for the students participating in the lunch buddy program. I volunteered at the school and tried to keep an eye on Tate and his progress from the sidelines. I had to invest time in getting to know other parents. Other parents were not going to be willing to allow their children to have play dates with mine if they barely knew me. I had to “borrow” their kids after school occasionally and go to the park or get ice cream. And during those times I was the social skills coach. Early on Tate was not thrilled when I arranged play dates but I did it anyway.

Tate (in purple) and his buddy Ethan (in blue)

Patience: It did not happen over night. Tate was in class with some of these kids for four years before he could tell them apart or remember their names. It took ages for Tate to develop reciprocal relationships with these kids and it took a lot of hard work. Tate had to be taught really basic social skills and those had to be reinforced for years. His peers had to be educated about autism and the adults in Tate’s life had to utilize every opportunity they could find to work on social skills. At the beginning a lot of Tate’s relationships were very one-sided. The peers were nice to him but he was not interested in them. We did not give up. I can honestly say that Tate has friends his own age now. He is able to actively participate in friendship. I did not know if we would ever get here but we have.