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

It's a Small World

I LOVE New York City. Ten years ago my husband and I spent 24 hours in NYC and I have longed to get back since then. I walk around in wonder and amazement while I am in NYC! But, I love my life in Kansas too. They are worlds apart though! Or are they?

On the way from the airport to our hotel on Times Square our cab driver was pointing out the sites. He pointed to the Empire State Building, and several other landmarks as we drove and when we went into the Queen’s midtown tunnel he explained that we were actually under the East River. He gave us a lot of interesting information and told us where a lot of things were in NYC that we might want to see. I asked him if he’d ever been to the places he was telling us about. He said he’d lived in NYC his whole life and had been to almost none of the places tourists come to visit. 

Not in Kansas

The next day I got to chat with a friendly clerk in a store for a few minutes and I asked her a few questions about her life here. She said she had always lived here. She said the tourists are walking around looking up at all the tall buildings and she is thinking, “they are just buildings. What is the big deal?” I asked her if she had ever been to The Natural History Museum, as we were on our way there next. She said she had not. I have asked several New Yorkers for directions. They could often tell me which train to take but if I asked them if they had ever been to (insert tourist attraction here) mostly the reply was, “No.” WHO would NOT take advantage of all these wonderful things if they lived right here? The answer is “the locals.” After I thought about it though it made a lot of sense. I have lived in Kansas for almost forty years and I just saw a field of sunflowers for the first time last summer. They have always been just a thirty-minute drive away every summer but I’d never taken the time to go. They were beautiful, in many ways more beautiful than the things we saw in the museum today. There are a lot of museums and other things in Kansas City that I have heard about that sound cool but I do not have any plans to do them. Why is that?

One of the things you often hear about NYC is how rude people are. We have seen and heard a few very rude things while we were here but we’ve also seen and heard a lot of nice things while we were here. I am not sure that the people of NYC are any ruder than people in Kansas. I can tell you that the people in NYC walk a whole lot faster than the people in Kansas though!

The very noisy subway

The subways… the subways are amazing and crazy and loud and frightening. To me. But not to a New Yorker. The traffic on the streets is nothing like you find in Kansas either. There is constant honking. Sydney asked our cab driver from the airport why everyone was honking so much. He looked surprised and said, “What? Cars in Kansas don’t honk?” We told him that we rarely honk our horn. He seemed very surprised. We walk slower, drive slower, and honk less, in Kansas. Ha

We saw something heartbreaking in the subway and Sydney wanted an explanation. There was a very pregnant homeless woman who was asking for money. She seemed very drunk or perhaps she had been doing drugs. How do you explain something like that? I did the best I could. I have thought over and over about the baby that will soon be born. Will he or she end up in a loving home as Sydney has?

We also found a little bit of home in the subway. I noticed a man sitting directly across from us with his cell phone out. He had a picture of a Jayhawk on his phone. If you’ve seen very many pictures of Tate then you know Tate almost always wears a hat or a hoodie with a Jayhawk on it. A Jayhawk is the mascot for Kansas University. Tate does not really follow sports but he loves that mascot. I said something to Shawn about the guy’s phone and Shawn asked him if he liked the Jayhawks. The man smiled and said “Rock Chalk?” I pointed to Tate’s coat, which has a Jayhawk on it. The man had grown up in Kansas and had gone to KU but had lived in NYC since the eighties. We got off at the same stop and walked together for a while. Although small town Kansas and NYC are very different, we are not REALLY worlds apart. We are on the same planet, and it is still a very small world we live in.

Subways and Peanuts

Riding the Subway

Tate loves flying and especially likes the take offs. So Thursday night, when I asked, I thought he’d probably say flying was the best part of the whole trip so far. But he told me the best part of our trip had been the subway. The subway of all things. That dirty, crowded, noisy, underground train. We had flown, ridden in a NYC Taxi, taken a ferry, seen the Statue of Liberty, and caught sight of a lot of the things he knows from all his movies, but the subway was his favorite.

On the Staten Island Ferry

The highlight of Thursday for most of the family was seeing the statue of Liberty. The statue of Liberty was huge for me. HUGE. Like it has been on my bucket list my whole life. But as wonderful as that experience was, I had one just as amazing (for me) sitting with Tate in the St Louis airport. We were waiting for our next flight, and I sat, astonished, watching Tate devour honey-roasted peanuts he’d gotten on the plane. I exclaimed, “Tate! You like peanuts?” He said, “Mom, I like peanut butter so I like peanuts.” Knock me over with a feather. I had tried that tactic with him many times over the years: “Tate, peanut butter is made from peanuts. Try them. You’ll like them.” He won’t let me use crunchy peanut butter on his peanut butter sandwiches. He eats plain m&ms but never peanut m&ms. But, he was eating those peanuts and acting like it was no big deal. This is a kid that for many years only ate about ten things total. He just does not normally nonchalantly tell his mother he now eats things she does not know about. Wow. He told me he had tried peanuts in the fourth grade when someone brought some to school to share. And then there was this other thing that happened while I was sitting in the St. Louis airport with Tate while he ate peanuts. And this one is probably much bigger than the first. Tate said to me, “Want to hear something funny? These are peanuts but there is no pee in them.” And he began to laugh. He told me a joke! A joke! He made up a joke. And although it was the kind of joke a five year old would tell and it was a potty joke, it was a joke. My kid with autism told me a joke. And what did I do? I said, “Tate, we don’t tell jokes like that. It is not nice to joke about pee.” And then I texted my best friend, Tate’s behavior consultant, and my husband (who was off buying us lunch), because I had to tell them how cool it was that Tate had told me a joke. And because they understand autism, they all got that it was a really cool thing, bodily fluids or not.

This was post two of our travels. If you have not already, go read post one.

Flying With Autism

Flying with autism can be a challenge. We have only attempted it twice. Five years ago we went to Seattle, Washington. I was not a blogger back then but I remember the trip going fairly well and the airport staff being very accommodating. We were nervous about getting through security without a meltdown so we practiced “going through security” at home a few times before the trip and we read a social story about airports and the whole process. Tate was eight years old, and although he was big for his age, he still was identifiable to everyone as a child. At the time he was just getting over five-years of anxiety that revolved around his shoes. Taking his shoes off in public was a big deal, a really big deal. But like I said, he was beginning to outgrow that and we practiced at home. He knew exactly what to expect and he did a fantastic job.

This time I hoped things would go just as smoothly. We talked at home about what to expect. We watched a video online that was supposed to prepare children to fly. Tate was confident he was ready to fly. Just as I have found in many other situations though, how well things go often depend on one single employee’s attitude or behavior. One person can mean the difference between success or failure.

At the airport this morning, as we passed from the unsecure area into the screening area, I coached Tate through the removal of his coat and his shoes, which he did as slowly and methodically as he does everything. There is no rushing Tate. He was holding up the line. People behind us were patient and I was pretty sure they could tell he had a disability. They might have even heard me talking to the guard who stamped our boarding pass only seconds before. The guard had raised his eyebrows a little when I accompanied my six-foot tall son up to the counter to help him, so I explained, “This is my son. He has autism.” I had been afraid the guard might ask him for an ID because of his size, not realizing he is only thirteen. Tate becomes more socially awkward than usual when he is in unfamiliar surroundings and put on the spot.

Once Tate got his shoes and coat into bins and onto the rollers, I realized he was wearing a watch. I asked him to take it off. He did this, slowly. The people behind us were beginning to get bins and go on around us and that was fine. No one was critical. In fact, most smiled at me as I apologized for being “in the way.” And then, one of the guards, an older man with a full head of gray hair, began barking at Tate and I to speed it up and move along. I looked up and said, “We are doing the best we can. He has a DVD player in his backpack. Should we take it out?” He snapped, “There is no time to take electronics out of the bag now. You are holding up the line.” So…. I put Tate’s backpack into a bin, my computer bag into another bin, slid them down the rollers, and we walked through the scanner. Tate went first and he was beginning to look intimidated. Rushing Tate will automatically slow him down. Tate went into the scanner. I modeled for him how he should raise his hands. As soon as he was on the other side, he began asking me for his watch. I went into the scanner but in my rush to stay with Tate and appease the annoyed guard, I neglected to remove my own shoes, so I had to go back out of the scanner and put my shoes in a bin, me on one side and Tate on the other, him asking me to find his watch. I apologized to the guard and explained that I was frustrated because of another guard’s rudeness. She knew exactly what I was speaking of and apologized to me for his behavior. I made it through the scanner to help Tate who was very nervous about that beloved watch. Guess who was now on the other side of the scanner now too? The nice gray headed man! And he was loudly asking who had left their things on the rollers. Of course the things he referred to were Tate’s. The guard was rushing us to move faster. I helped Tate grab his shoes, coat, and backpack, and we moved off to the side. I showed him I had his watch and I shoved it into my pocket so not to hold up anyone who did not want to wait while he slowly put that watch back on his wrist. Priority was getting those shoes back on and finding the rest of the family. I grabbed my own things. My shoes had just come through the machine. I had easily found my coat and my shoes, but my computer bag was nowhere to be seen. It should have come through right after Tate’s backpack. Tate was still worried about that watch and I needed to catch up to the rest of the family so I actually forgot for a few seconds that I was still missing that bag and walked away. After we found the rest of the family I exclaimed, “My computer bag! I forgot it!” So…. back I went to the security screening area. There was the same gray-headed guard, holding up my bag and asking loudly, “Whose bag is this?” I thought, “Seriously. There are six or eight guards working here. And I get to deal with him again!” I told him it was my bag and apologized for leaving it. He asked if there was a laptop inside and I told him there was. He asked why I had not removed it from the bag when I sent it through the scanner. I told him that he had told me that we were holding up the line and that I did not have time to remove electronics. He snapped that I had only asked about a DVD player in a backpack. I took a deep breath and I said, “My son has autism. I was trying my best to help him get through security but you were pushing us and trying to hurry us so it was hard to deal with both him and you. You were rude to us and my son was moving as fast as he could move. We would have gone through faster if you would have been nicer.” He grumpily replied, “There was a long line behind you” as if that totally excused his rudeness. I noticed that other guards were listening and he did too. I was glad. I’m not so sure he was. He removed my laptop from my bag, scanned it with a wand, put it back into my bag. He handed it to me without another word. There were so many things I wanted to say but instead I muttered, “Thank you.”

Flying 

So, when you ask how Tate has handled our travels so far, I would have to say, with the exception of ten minutes of intolerance from one grumpy man, a small ‘bout of anxiety over his watch being off his wrist for mere minutes, and the fact that I forgot to bring his chap stick after I assured him I had it, Tate has had a great experience. Did you know the same lip balm you can buy at Walmart in Kansas for about one dollar costs $4.25 in the St. Louis airport? Considering the hours it took to get from Kansas to New York City and the many people we have come in contact with, one intolerant man, a few minutes of anxiety, and the inflated price of a chap stick, has definitely not put much of a damper on things for him or any of the rest of us.

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.