A Happy Camper or Not?

The blog is mostly about my two youngest with special needs but this particular post is a little different. Don’t click out when you see the word “bible.” I’m not going to preach to you here. Although my religious beliefs and convictions are extremely important to me and I’d love to share those with you, I am not going to do that here. I’ll get around to my autism related thoughts on this post eventually but you’ll have to take a walk down memory lane with me first. And by the way, if you do want to know more about my religious beliefs then private message me. I only have one topic I like to discuss more than autism. It’s the bible.

I just spent a week in Texas at a bible camp for young people. I was a part of something great there. This particular week at this particular camp was focused on leadership. There were classes on how to lead a song, study the bible, and how to outline, write, and present a lesson. At the end of the week many of the campers presented their first devotional or led a song or public prayer for the first time. Their enthusiasm was so encouraging.

Bible camp has been a huge part of my life as long as I can remember. I loved going as a child. There were bonfires, hayrides, and late night devotionals, crafts, pranks, and silly songs, old friends reunited, and new friends made. We had ping pong tournaments, played card games, and even had watermelon seed-spitting contests. I fell asleep in a rustic cabin with the sounds of girls giggling and crickets and frogs singing. The perfume of the week was always bug spray and sweat. Going to camp was as exciting to me as Christmas. I would pack a week ahead, unpack, and repack. Before I was old enough to go to Little Blue Bible Camp in Missouri, at age nine, I jealously watched my older siblings gather their swimsuits, flashlights, bug spray, ball gloves, and Bibles every year. I’d follow them to their cabins and watch them choose their bed for the week, anticipating the day I would be able to do the same. I remember the first year I was old enough to stay. I got a top bunk and was ecstatic. The abundance of spiders was hard on me but even those spiders could not deter my enthusiasm for camp. As I got older I also went to camp in Kansas and in Nebraska. I loved every one of them. 

When I aged out of going to these camps as a camper, I began going as a counselor. Between my sophomore and junior year of college I spent a whole summer working at a camp in Arkansas near Harding University where I attended college. That was an amazing summer. Three of my kids have chosen to spend their summers working at a camp after they were too old to go as campers. Currently, two of my children are working at Green Valley Bible Camp in Rogers, Arkansas all summer. They are the lifeguards and kitchen help there. They love their jobs.

The camp I attended this week was near Maud, Texas. It is called Camp Ida. I was in charge of crafts. I also worked in the kitchen and it was exhausting work. It was hot and I am covered in mosquito bites, but I am so glad I went. I made some wonderful new friends and heard some great lessons. The bug bites will fade but the friendships and wonderful memories will last.

I was asked the same question many times this week: “Why didn’t you bring your kids?” It is a fair question. Tate is 13 and Sydney is 11. They should be going off to bible camp each summer just as their older siblings have, right? Oh how I wish I could have taken them with me. Most of my readers “know” Tate and Sydney well enough to understand why I did not take them to camp. Sydney actually would have loved camp. Once we got past that first hour in the morning and her medications took control of her hyperactivity she would have been able to sit for most of the daytime activities. But in order to really participate in things she would have needed adult support. She may actually be able to go to camp one day.

It makes me sad but Tate will most likely never go to camp. Tate’s autism and the anxiety that comes with it keep him from doing so many of the things his older siblings have loved. Tate is miserable even visiting the campgrounds his older siblings have attended. He’s grown up watching his older siblings happily ready themselves for a week of camp but instead of anticipating the day he can go, he lives in fear of us sending him to camp too. Recently a friend asked him if he was old enough to go to camp this year. Tate immediately said, “No. I am home-camped.” It cracked me up. He knows what homeschooling is and extended that to camp. I celebrate when he is creative or original because there was a time when he was not able to communicate that way.

As I looked around me this past week at the beauty of the campground and I heard the children playing, singing, and participating in bible classes, I tried to picture Tate there. He would have been using stims to cope and he would have appeared very odd to the other campers. Being the great kids they are, they would have tried to include Tate but he would only have wanted to talk about how many days and hours there were left until he could leave. He would not have been able to sleep at camp and he would have not eaten most of the food available to him there. He would not have enjoyed the pool because he only swims at home when it is quiet and there is no splashing. He would have hated the smells, the sounds, and the heat at camp, but more than any of that he would have hated not being able to have a dvd player in one hand and an ipad or ipad in the other. His movies are as important to him as the food he eats.

I got several texts from Tate this week and a few phone messages. Although he was being very well cared for, he was anxious because I was not home. He went into crisis mode when one of his favorite movies stopped playing due to a scratch on the disc. Of course the scratched disc is one that is not commonly sold at stores so it had to be ordered. Thus he has worried, paced, rung his hands, missed out on sleep, and talked of little else for the past few days. Tate will check the mail each day until it arrives, insisting the date of arrival we were given is probably a mistake and it will actually come earlier. This is our life. This is autism. Autism has robbed Tate of so many precious things, bible camp included.

Want to read more about autism? Try this one: Unpredictability

Unpredictability Means Anxiety

When Tate was a toddler there were many things that caused him anxiety. Taking an alternate route to a familiar place could set him off. A power flicker would guarantee a meltdown. There would be crying, hyperventilating, and lots of stimming. I did not understand the real issue behind the anxiety when Tate was small. I assumed he was afraid of the dark or afraid of thunder as many young children are. He seemed so terrified at the first sign of raindrops. I wondered if he could be afraid of the color orange because detour signs seemed to cause him pain.

Because Tate did not really have conversations but mostly just talked AT us, it was hard to understand what he meant when he tried to tell us things. It was also hard to reason with Tate about anything. I was often left scratching my head, playing detective to decipher what he was trying to tell us.

Being so anxious when it looked stormy left me wondering if maybe Tate had a fear there might be a tornado since we do live in Kansas and have warnings fairly often. I also assumed he was afraid of the dark because of his reaction to a power flicker. I bought flashlights that charge in the outlet and stay lit so if the power went out it would not be completely dark. I wrote a social story about storms and the dark. I reassured him anytime he seemed anxious about the weather that our home was very safe. Yet, I could not see we had really helped him at all.

I eventually discovered Tate’s anxiety was not really about the darkness or the storm outside and definitely had nothing to do with the color orange. As I watched him react to detour signs in the road and light switches that would not respond, I came to realize Tate was really afraid of the unpredictability a power flicker or a detour sign brought. He had to be able to COUNT ON the lights when he flipped the switch. He needed to be able to COUNT ON the road that took us to his school or to the store. Tate’s world revolved around routine and sameness. When we drove a different route to a familiar location, he panicked. When the lights went out, the television stopped and the video games stopped it was all out of his control. The meltdown was not out of anger and never about the fact that a power outage had caused his movie to prematurely end, as it might have been for a typical toddler. The meltdown was out of anxiety because he did not KNOW when the power would come back on or the road would open back up. Tate could not handle the fact that the television and lights were no longer reliable or our route to the store had changed. Tate has to KNOW what comes next in order to feel secure. He needs to be able to hit “play” on the DVD player and know it will play. He needs to know we take two rights and then a left to get to his school. His world is much smaller than yours or mine. 

Tate is 13 now and barely has a reaction these days when our power flickers or goes out during a storm. He never becomes anxious if we see a detour sign now either. I am elated at the progress he has made. The last few times we have had power outages at home, he retired to his bed with a flashlight and a battery operated game. He stims a little more but he does not cry or panic. There is light at the end of our dark tunnel… pun intended.

Tate still has anxiety often and sometimes there is little I can do to help. The last nine weeks of this past school year, Tate’s bicycle was at school. Bike riding was incorporated into Tate’s P.E. class at my request. Having his bicycle at the school upset Tate. His anxiety level skyrocketed and his number one topic of conversation for three or four weeks was about his bicycle. And then he stopped obsessing as if it had never been a problem. That is progress.

Our school district’s Extended School Year (ESY) began recently. ESY is just another name for summer school. We actually do not call it by either name at our house. We call it math camp. Tate does not go to SCHOOL in the summer but he is willing to participate in MATH CAMP. And as every other child is walking through the school doors to have summer school, Tate is going to “math camp.” Anything to avoid the anxiety.

Ten years with the autism diagnosis and I am still learning. The same week ESY was to begin I was going to be away from home for four or five days. I needed to prepare Tate for what to expect while I was gone. I explained he would be escorted to Math Camp by an older sibling. I showed him I had bought his favorite snacks. The more I talked the more he stimmed. His eyes were beginning to water and his face was going splotchy. I assumed he was upset because I was leaving or because summer school was starting but that was not the problem. Tate reminded me the new Sponge Bob movie would be out on Tuesday while I was gone and I had promised to take him to buy it. As soon as his older sister assured him she would take him straight from the school to Walmart, his face cleared up and his stimming stopped. It was all about the movie, of course!

A few years ago the conflicts and the anxiety were much harder to manage. Tate’s communication and my detective skills were not as developed a few years ago. Tate could not calm himself as quickly then as he can now. That light at the end of the tunnel keeps getting brighter!

If you liked this one you might like to read: Don't Touch My Skin

An Autism Mom's Thoughts About Disney's Inside Out

Spoiler alert. I’m going to talk in detail about the plot and the characters from the Disney movie “Inside Out.” Stop reading if you do not like spoilers.

If you’ve followed my blog for more than five minutes and if you know anything at all about us then you know my son Tate has autism and our lives revolve around movies. He has the release date of all the movies he is interested in (which include most G and PG rated ones) on our calendar. I don’t know how he does it, but before most of us have seen the first trailer for a new movie, he has the release date on the calendar and has memorized the actors involved in the making of the movie. To Tate, these things are as important as our loved ones and our careers are to us. He spends most of his waking minutes thinking about movies and talking about movies. So, of course today, on opening day of Disney’s “Inside Out” Tate woke with great joy (pun intended.) He toe-walked and bounced as he paced all over the house in anticipation. I was a bit apprehensive myself. We had been told earlier in the week Tate should avoid popcorn as he has just gotten braces on his bottom teeth. Tate was not happy about this news and had been telling me all week the orthodontist must have been mistaken. But we went to a favorite restaurant before the movie, got some m&ms, and a bottle of water, and settled into our seats without incident over the missing bucket of popcorn.

The first five minutes of the movie were brilliant. Absolutely brilliant. The writers and animators illustrated a baby’s first feelings and memories and how they are stored away. They took a very complex and abstract idea and made it simple and clear. I loved it. We were introduced to the emotions of a girl named Riley. There was Joy, Sadness, Anger, Fear, and Disgust. Each character was well defined for the targeted audience of children. The characters sat behind a control panel and used the controls to react to the things happening to Riley throughout her day. They collaborated to decide which of the emotions should use the controls and help Riley to react.

The moral of this kids’ movie was a credible message for adults. I cannot always find a real solid plot in animated movies but this one was pretty clear to me. And I think it was a good one for parents to think about. The character Joy went to great lengths to help Riley avoid Sadness and be happy all the time. Riley’s parents unknowingly had pressured her to be “their happy girl” so Riley tried hard to put on a front even when she needed to be something other than happy. The premise of the movie was that Sadness is an important emotion, and one we cannot always avoid. Sometimes our children have to be sad. We cannot shelter ourselves or our children from every sad experience out there. And we cannot ask our children to deny their genuine feelings of sadness so we will not be inconvenienced either. I understood the message to be that sometimes after a sad experience we can find happiness we would not have otherwise found. Without sadness there would be no joy.

We were exposed to personifications of other characters’ emotions as well. If you go to see the movie, be sure and stay until the credits roll. It is then you will see Joy, Sadness, Anger, Fear, and Disgust as illustrated for Riley’s teacher, a dog, a cat, a clown, and a few of the other people in Riley’s life. This was another magnificent part of the movie for me. Every character had the same five emotions that were almost identical in appearance. I began to ponder at that point, what would it look like if I were able to illustrate those five emotions for Tate in the same way they had done in this movie? Joy would sit at Tate’s control panel and giggle for long periods of time while everyone around him wondered why. Sadness would be very confused, underdeveloped and never able to convince Tate to cry, while Anger would be able to produce tears when he was provoked. Disgust would be overactive. Almost every food the rest of us eat would cause that character to recoil and gag. Smells other people barely notice would be a problem for Disgust too. Fear would have to be depicted as a hyperactive character who was extremely neurotic for Tate I think. He would always be trying to grab the controls from the other emotions. If I were able to personify Tate’s emotions I think I’d add a sixth character. He would be a sort of big brother to Fear. The sixth character would be named Anxiety (or Stress). Anxiety would tower above the other five and be a giant among them. Anxiety would have some massive muscles and would push the other emotions around. He would constantly be pushing his smaller brother Fear to talk louder. He would silence Joy anytime he got a chance. Anxiety would be a tyrant.

Even during the movie Tate had been so excited to see, his anxiety was ready to suck some of the joy right out of the experience for him. During one scene, Tate became stressed when Joy, Sadness, and another character were trying desperately to find their way back to headquarters. Tate became restless and said to me, “Nothing to worry about. Stay calm. They are going to save Riley.” Tate often reassures himself when he is anxious by offering support to me. Another time, Riley’s dad got stern with her and frowned after she had misbehaved. Tate became nervous and leaned over to ask me, “Her dad still loves her, right?” I assured him that dads still love their kids even when they are unhappy.” I know Tate struggles to understand these kinds of things and has always been nervous when someone speaks to him seriously about anything. He needs people to smile at him, even if they are explaining something quite serious or speaking to him about danger. Tate seems to believe Joy is equivalent to love while Anger or Sadness cannot be. After the movie I took the opportunity to talk with Tate about these things. I had hoped the movie would be a real teaching tool for us and I believe it was. I would highly recommend this movie to the autism community. Disney did a good job with this one. 

If you liked this post you might like to read about the anxiety Toy Story caused for a while. Woody and his hat were a big thing at our house when Tate was younger. Here's the link:  Unusual Attachments

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