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

Tate's Lunch Buddy Program Described

Since my last post, Thank You to The Class of 2020, I have had numerous requests from people asking me to describe the lunch buddy program. The following describes Tate's lunch buddy program. Part of the beauty of a lunch buddy program is that it can be "tailored to fit" and changed as needed. 

I first heard of lunch buddies when I was at an autism conference before Tate ever began school. As soon as I heard the program described I was “sold” on the idea. I began asking for a program for Tate when he started first grade. After we discussed the lunch buddy program at a meeting and considered it for first grade, it was agreed that we would wait and begin it in second grade. There were several reasons involved. We already had several social skills “programs” in place that first year of all-day public school and they were very time-consuming for the staff. The speech teacher had launched a social skills group for Tate, pulling peers from his class two or three times a week to play games and encourage Tate to interact with his peers. We had an adult coach with Tate at recess prompting him to play with peers so he would not wander aimlessly, isolated or lost in repetitive behaviors. Tate was struggling to learn the names of his classmates so photographs of all his classmates were obtained and he practiced naming them and matching children to their names as part of his day. The school staff was working hard on so many things that the lunch buddy program was put off.

When Tate began second grade, at my insistence the lunch buddies program was added. The purpose of the lunch buddy program was for Tate to learn social skills that he could then generalize into other settings. Our hope was to teach Tate skills by coaching him and eventually fading the prompts. Let me be clear: a lunch buddy program by itself is not going to teach your child all the social skills they need to learn. It is one of many things we have done to help Tate learn social skills. The skills he has learned from the lunch buddy program have been reinforced over and over throughout his day since we began the program. Mastering skills was not something accomplished in one year. Tate has had a lunch buddy program for five years and it has taken a very long time to see a lot of results.

Buddies

The lunch buddy program has been successful, in that Tate can sit amongst friends in a lunch setting and be fairly comfortable. Tate has learned skills and the coach has been faded much of the time. Tate still has autism but he is able to handle himself and respond appropriately in so many situations now due to all this coaching. As it turns out I often hear from the parents of the typically developing children who have participated that their children have learned so much from Tate. They are thankful that their children have learned about autism and have become very comfortable around my child with special needs. Among the things these children have learned are compassion, understanding, patience and perseverance. They also have a pretty good idea about what autism is and could probably generalize what they have learned to interact with other people with special needs.

I am a firm believer that the children who participated should be told about my child’s disability. I do not believe the lunch buddy program would have been successful for us without the full-disclosure that I insisted upon. Explaining WHY Tate is different than they are and WHY Tate NEEDS so much more instruction than they do was key. Children who are educated about autism are far less likely to bully a child with autism in my opinion. I do not have statistics on this. I did what made sense to me. I insisted from first grade on that Tate’s classmates be told that Tate has autism and then given an age appropriate definition of autism. I wrote a personalized definition with illustrations in a picture book format for the kids. It started out very simply in first grade and got a little more detailed with each passing year. See the book in my post: What is Autism. When Tate was in first grade I wrote a note to parents that went home in the first graders’ backpacks, explaining autism and letting them know their child had a classmate with autism. I wanted to take the mystery out of the reasons that Tate was followed around by a Para-Professional throughout his day. I wanted parents to be ready with an answer if--and when--their child came home and asked questions about Tate.

The lunch buddy program has evolved a lot over the years. We learned what worked and what did not and tweaked it as we went. In grade school there were parent permission slips that had to be signed so the students could participate. Tate’s whole class wanted to be involved and got those permission slips back quickly. The kids LOVED teaching Tate. When we began, in second grade it started with one teacher or Para-Professional sitting with Tate amongst several of his peers. His peers were coached before lunch some on how to try to involve Tate in their conversations. Tate was very hard to engage back then. He would talk to adults but not children easily. The kids would ask him questions they had rehearsed with a teacher in a short meeting. A peer might ask Tate, “Do you have pets?” Tate would answer, “Yes”. The adult would maybe have to whisper to Tate and tell him what to say next. So Tate might be coached to say, “I have a dog and two cats.” The peer would respond appropriately and maybe ask the names of the pets. The adult coach would push Tate to answer questions and then reciprocate to the child who had done the asking. So Tate would be told to ask, “Do YOU have any pets?” It was amazing to see the difference in the typically developing children and Tate. The peers just knew how to respond and keep a conversation going, whereas Tate had to be told. The peers knew they should reciprocate with another question and keep the “ball bouncing” while Tate did not. Heavy prompts had to be used for Tate back then. After trying these very scripted types of things and Tate not making a whole lot of progress, it was determined that the lunchroom setting was pretty overwhelming for Tate. So, instead of the noisy lunchroom, they moved to a classroom or the library where it was quiet and Tate would be more comfortable. Tate never eats a school lunch and has taken the same lunch from home for seven long years (peanut butter sandwich-no jelly, chips and a couple of cookies.) The kids that wanted to participate in the lunch buddy program after that first year would bring a sack lunch and commit to being a lunch buddy for a week at a time. Usually there were two or three kids who would eat with Tate for a week. The kids’ questions and conversation starters were scripted with note cards beside them or even written on a placemat. The kids got so good at doing this that a lot of times the “cheat sheets” were not used. The students became therapist themselves and the teacher would often sit back amazed at how well the kids were doing. Conversation skills are not the only thing that is worked on during lunch. Posture and body language is also constantly targeted. Keeping Tate from stimming with his hands and fingers and just looking odd in general has been a huge part of the lunch buddy program.

These two boys are always good to Tate.

Because recess came right after lunch the program was carried over into the noon recess. The lunch buddies were asked to try to engage Tate in play at recess too. Tate often declined or tried to decline but his adult coach was right there encouraging him to participate in the peer activities.

For sixth grade Tate and his class moved to the junior high. The lunch buddy program continued. Tate and his lunch buddy group sat in the lunchroom that year, but at a table off to the side. It was still noisy and a bit overwhelming but doable. An adult was present every day but if the kids could keep the conversation going and Tate interacting the teacher was able to sit back and watch.

This year Tate is in seventh grade. Tate is sitting at the long tables with his peers three days a week with a teacher observing from a distance. If he becomes distressed or looks overwhelmed they go in and “rescue” the situation but the kids are always friendly and willing to help Tate too if they can. Two days a week the lunch buddies are back at the small table off to the side with a peer or two and a teacher. They are working on reciprocity and the coach is prompting Tate when necessary to ask APPROPRIATE questions and not just repeat the same question that was asked of him. (Read my blog post on reciprocity.) One day each week a Resource Room teacher is the adult at the table and one day a week the speech pathologist is the adult at the table.

Tate with two fantastic teachers, 6th grade

There are a lot of variables involved in a successful lunch buddy program. I have mentioned the education of the students so they understand the child’s disability as one of these variables. Another is very obvious. You must have students willing to participate. We were lucky. The kids LIKED being Tate’s teachers. It made them feel important. The staff involved often praised these kids and let them know what a difference they were making. When Tate was in grade school I occasionally took donuts to the kids who were participating in the program. Without the kids motivated to help there would have been no success. Another must, also an obvious one, is a staff that is excited about the program. If the staff had not jumped on board and made the lunch buddy program FUN and interesting then the peer models would NOT have been motivated to participate. Tate has been blessed with several rock-star teachers who love their jobs. Lastly, I had to be vested in the idea. I pushed and pushed and pushed some more for social skills teaching in every IEP meeting we had and followed up to make sure things were happening. Let me insert here. I have had good relationships with almost all of Tate’s teachers and Para-Professionals. Had we been using our energy to argue instead of using it to help Tate then the lunch buddy program would have probably failed.

One more disclaimer here: Tate still has autism. Tate’s social skills are still very poor compared to his peers. He still is not really keeping up his half of a friendship with these kids at all.  Tate has peers that are so good to him and so friendly but he does not have nearly as much interest in them as he should. He is sometimes even rude to them because of his poor social skills. We have seen VAST improvement though because of the lunch buddy program. I remember reading when Tate was newly diagnosed that it would take hundreds of repetitive trials to teach him the things that other children were just absorbing from their environment. Tate has had over nine hundred of these lunches with his peer models and adult coaches at this point. I am confident I can say that I would be living with a “different” Tate had he not had this program in place.

You might also like to read: A Friend is a Guy Who Likes You. 

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