Take That Autism!

Sometimes Autism sucks.

I never use that word in everyday life. I would be all over my kids if they said the word "sucks", but no matter what word I put in its place it just didn't work. So let's just say it like it is...

Sometimes Autism sucks.

Monday night was one of those times.

This past Monday was Memorial Day. Jacob had been looking forward to this day all week as it was his best friend's 9th birthday and we were celebrating it at Jacob's favorite place in the world, our local MLB stadium.

Years ago it had been a struggle to get Jacob to go to the baseball stadium because of his fear of fireworks. Despite his love for the game, and his love of the team, he wanted nothing to do with it because of the fireworks at the end of the game. But after many times of forcing him to sit through the game and fireworks at the end, it became a non-event.

So it really wasn't on my radar to be worried about attending the game for our friend's son's birthday. But it should have been.

The party started out just fine with 23 kids and adults enjoying sandwiches and cupcakes in the parking lot prior to the game. The boys were having a great time alternating between playing their own game of baseball and grabbing food. It was about 45 minutes to game time, and we began packing things up and that was when the first "BOOM" sounded.

"What was that?" Jacob asked running over to me. "Did you hear that boom? Was it thunder? Was it a gun?"

Uh oh...

I tried reassuring him that it was nothing, a one time thing in celebration of Memorial Day. A cannon maybe? Some kind of old gun? But nothing to worry about.

Jacob didn't believe me and headed to our van. While his friends were anxiously waiting to leave the parking lot and head into the stadium and the adults cleaned up the mess, Jacob's heart was beginning to race. I could see the look in his eye. He was terrified, and beginning that downward spiral.

I honestly didn't think there would be another cannon blast. Between my husband and I, we convinced Jacob that everything was fine and he should walk into the stadium with his friends.

But for Jacob everything was far from fine. As we walked in he began to panic. "It's ok, Jacob. You're safe," I quietly whispered over and over. He grabbed for my hand and I hoped that just knowing his parents were there would be enough to get him through this. Around us, his friends kept talking about the loud "Boom" and what could have caused it. The more they talked, the more I felt Jacob tense up. It was as if he was walking into a line of fire as we walked into the stadium.

There were people everywhere. As we weaved through the crowd trying to find our section, patriotic music played, flags waved, the field below us was full of military being recognized, and Jacob became more and more tense and clung to my hand.  For whatever reason, I thought we just needed to get to our seats and all would be fine. Jacob would see that nothing more was going to happen and we could all relax and continue with our fun night.

It took some adjusting to get our large group settled. Jacob was in the row below us right next to his best buddy. Why I hadn't thought to have him in the middle is beyond me. Like I said it just wasn't on our radar that we would have any problems. He loved baseball and had been to plenty of games over the years with no issues. His little sister was seated among the girls to my left, and my husband to my right. We had just taken our seats and I remember thinking at that moment how glad I was we were so close to the restrooms and concessions, when Jacob sprung up from his seat with that panicky look in his eye and took of running screaming the entire way.

I yelled to my husband to run after him, turned to my friend to make sure she could watch my daughter, and took off running as well.

The joke on my son's baseball team is how slow Jacob runs. He runs (and walks) on tip toe and often I hold my breath after he hits the ball and is running to first base because he is not exactly what you would call speedy. But somehow, when he is scared, that boy can run!

We caught up to him outside the stadium walls, yet inside the fence. He had paused right  in the middle of the smoking area. My husband ran up to Jacob and held him tight, restraining him for his own safety, because when Jacob runs, he runs, without looking, without thinking, and without any thought to his safety. We tried talking to him calmly. We tried reassuring him that everything was ok. And while we did that he screamed, and cried, and hit, and kicked trying to get away. We assured him we would let him go as soon as we knew he wouldn't run, and he would promise, but the moment we let go, Jacob would attempt to run. Or he would be fine for a moment but quickly the panic would rise again.

This was nothing new for my husband and I. We had done this plenty of times with Jacob, held him close to keep him safe, safe from himself. But it had been a long time, and this meltdown was big.

People all around us were staring. How could they not? A boy screaming and throwing a huge fit, punching and kicking his parents. I'm sure to most people they had no idea they were witnessing Autism at its worst.

We tried reasoning with Jacob even though we both knew it was pointless when he is in that horrible place. I think both my husband and I just weren't sure what to do in that moment. We both knew Jacob's intense love for baseball and his MLB team. We also knew how much his best buddy meant to him and how long he had been waiting for this day. We knew our daughter was sitting inside, so we couldn't just leave. We knew two other friends had rode with us in our van and we had to make sure they had a way home. And we knew once you walked out the stadium fence line, there was no return.

So there we stood among the smokers who continued to smoke their cigarettes yet taking this all in out of the corner of their eyes, with passersby gawking at us, employees of the stadium slowly walking by assessing the situation wondering if they should intervene. Around us "God Bless America" hung in the air coming from the stadium, and every once in a while a cheer as the crowd applauded the Veterans being honored each time making Jacob quickly cover his ears anticipating a loud boom. At some point a 21 gun salute went off, causing Jacob to become frantic looking for an escape. We were unsure what our next move was as we continued  to attempt to calm our son, when above us a man starts yelling from the top of the stadium wall.

At first I couldn't make out what he was saying. Nor did it even register that he was yelling at us. But it soon became clear that he was very intoxicated and indeed his garbled words were meant for us, and I made out a few words. "You shouldn't be hitting your mom...blah...blah...blah..." He just kept yelling. "...disrespectful to the armed forces!"

That was when it all became too much for me. I stepped away from Jacob, towards the man high above me. I felt like everyone around was watching to see how this was going to play out, and I yelled back to him, "My son has Autism! Do you have a problem with that?"

He yelled back that he couldn't hear me, and he quickly disappeared. I have no idea if he really did hear me or even if he would have any idea what I was talking about. But my yelling wasn't just for that drunken man. I needed and wanted everyone who had been witnessing this scene to know what they were seeing. Autism at it's worst.

I turned back to Jacob and my husband. Jacob seemed less tense.In fact, he seemed broken, like he just wanted to fall on the ground and sob yet my husband held him in place. Jacob wanted to go inside. He didn't want to miss the opening line ups, his favorite part.

A young guy smoking behind Jacob said something about "that idiot had been saying stuff in the parking lot, too." Another person said, " You're ok little buddy." It was interesting to me how suddenly the tone had shifted slightly. Those inquisitive curious judgmental faces suddenly seemed much more full of compassion and understanding.

Jacob took a few deep breaths and we walked back into the stadium. I wish I could say we stayed. We were there only for a moment. Patriotic songs were still playing and Jacob said, "They are singing!" The field was lined with Veterans. The fans were cheering. And then this...

"Fire away!"

Jacob sprinted from the stadium again, not glancing back for a second. He was anticipating a cannon blast, and he had to get out of there. He didn't realize they were talking about firing in the first pitch. I reached Jacob first, and put my arms around him tightly as if in a bear hug, keeping him from running anymore. While I held him we slowly walked toward the exit. Jacob was sobbing and saying, "I just want to leave. I just want to go home."

"Ok, honey."

At that point my husband and close friend joined us. We were back in our same spot in the Smoking Section. We were becoming all too familiar with this spot. My husband took over holding Jacob and my friend talked calmly to Jacob. I could tell Jacob was too far gone. He looked exhausted. Suddenly, high above military planes flew over the stadium. We all looked up. Even Jacob with tears streaming down his face. I looked at my friend and realized we needed to end this. She was outside with us, instead of inside the stadium enjoying this moment with her own son on his birthday.

Jacob heard the starting line up begin. I could tell he was torn, wanting desperately to be there, but terrified of more cannon or gun blasts to come. Our new plan was to go to Guest Services hoping they could tell us if the Memorial Day celebration was over and if the rest of the game would be a typical day at the park.

Unfortunately it wasn't going to be. Guest Services checked for us, and the plan was for a cannon blast with every run scored. I looked over at my son sitting there with his new much too small baseball cap given to him by Guest Services upon his head, his little face still wet with tears, and knew we had to leave.

After retrieving his sister, who was also crying now because she didn't want to leave, and his friends coming to say goodbye, we began our walk to the van. Jacob was still panicky at this point. He just wanted out of there fearful that his favorite team would score before we could exit the parking lot.

Once on the highway his mood changed. It usually does. Instead of anger or panic, he became remorseful, apologizing over and over for having to leave despite us reassuring him that no one was upset. He was worried that he had ruined his best buddy's birthday party. He was beat down. Tired. Exhausted. Drained. He was finished. We all were.

I would like to say it ended there.

Once home, Jacob played baseball outside with a neighbor friend for a short while, came inside and got ready for bed, and fell asleep fairly quickly. I was relieved that the evening was over, or so I thought.

As I got ready for bed that night exhausted myself, I thought I heard Jacob in his room above me scurrying around. I paused and listened again. Surely it wasn't him. He had been asleep for hours, and I had just checked on him minutes before and he was sleeping soundly. All was silent, so I finished getting ready for bed.

I turned to get into bed, only to find Jacob nestled in my side already fast asleep. I gently woke him, and he rose to walk to his bed without opening an eye or saying a word. Again I tucked him in bed, and quietly exited his room. But right at the door, I heard him say, "mom..." I went to his bed and found him shaking uncontrollably. "Jacob, are you OK? Are you cold?" I asked placing a hand on his forehead like any good mom would do. For the longest time he didn't answer. Concerned I sat on the end of his bed to make sure he was going to be alright. Again Jacob said, "mom..." "Yes honey," I replied.

"I'm scared, mom," he said, "I'm just so scared."

I laid down beside him and held him for the longest time, as he continued to shake.

He was up most of the night begging to go to sleep yet his fear prohibiting him, and often times demanding to know why God had made him this way, a heartbreaking thing for a parent to hear their child say. Finally at 5:30 he fell asleep.

Yes, Autism, you won that day. Thanks for the reminder that no matter how much we plan, prepare, or think our son has overcome the obstacles you present, you are still there.

There's a saying in the Autism community that I hear often when a child does something that conventionally people would assume a child with Autism could not do. It is "Take that Autism!". As I was feeling defeated and deflated yesterday by Monday's events, I realized something. When we were standing in Guest Services getting ready to leave and Jacob was crying and saying goodbye to his friends, he asked "Can we do this again with all of us here coming back to a game?" Even though he was in the middle of one of the biggest meltdowns he had ever had, so freaked out enough to where I was wondering if we would ever step foot at this stadium again, Jacob already was planning a return trip, just not on Memorial Day.

So "Take that Autism!"

I'll give you Monday, but we have the rest of the summer.

"Mommy, Do I have Autism?"

It was the week before Christmas when Jacob asked the question.

It wasn't how I had envisioned it in my mind countless times before. For whatever reason, I had figured it would be both my husband and I sitting Jacob down, giving him the details of his diagnosis. We would explain it the best we knew how, fielding all his questions and giving him all the right answers. Deep down, I knew it was time. Yet we always seemed busy, or the time was never quite right, or was it really time?

So I hadn't really expected it as we sat in our eat in kitchen that cold December night, while my husband was working late again, the kids ate their corndogs, and I went over the long list of things yet to be done to prepare for Christmas.

"Mommy, do I have Aut-ism?" Jacob asked in between bites.

The question jarred me out of my thoughts of shopping lists, Christmas cards, and treats to be baked. Had I heard him correctly? Surely I hadn't.

"What did you say, honey?" I asked.

"Do I have Autism?"

The word sounded foreign coming from his mouth, as if he was saying it oh so carefully so as not to mispronounce it. A million thoughts immediately scattered through my brain. Where had this come from? What would I say? Would I find the right words? This isn't how I had planned it. Why couldn't my husband have been here? Oh, please don't let me screw this up. You only get one chance to tell your child for the first time that they have Autism.

"Well...why do you ask?" I asked him. Hadn't I heard once that answering a question with a question was a good practice?

"Because T at school said he is pretty sure that I do. So do I?"

My first reaction was, "who was this T kid and why was he telling my son this?" And then I remembered, T was the boy in Jacob's class who also has Autism and had shared that information with his peers early on in the year. Somewhere along the line someone must have shared with him Jacob's diagnosis.

"Would it bother you if you had Autism?" I asked, again using my answer a question with a question technique. I needed to know what exactly he knew and thought about all this already.

"No", Jacob answered short and sweet.

"Well, yes you do have Autism," I told him.

I went on to tell him just briefly how his brain thinks differently, how things bother him that don't bother other people. But my words were lost as he and his sister were bent over his tablet playing some cupcake creating game.

There was so much I could have shared. Social struggles, obsessive thoughts, behavior problems, sensory issues, anxiety, meltdowns, frustrations, ADHD, etc, etc. But really is that what Autism is? Sure those are the clinical "Signs and Symptoms" of Autism, how Autism presents itself to the world.

It just seemed to me if I did that, it would be like telling him his brain was wrong. It's not wrong, Just different. I want him to grow to be a confident young man, to feel empowered by his diagnosis, and not use it as a crutch or to feel shame.

I want him to know that with his Autism comes much love. Such a deep love that if I could take away all those struggles, I would. I want him to know that he has Autism, but that is not who he is, there is so much more. I want him to know that it is a big deal, yet in the same way, it isn't a big deal at all. Nothing changes. He is the same sweet boy I have and always will love unconditionally.

Maybe that was all he had needed at that moment. I knew that bits and pieces would come out here and there and we would give Jacob the valuable information about his diagnosis as he needed and wanted it.

It wasn't as if Jacob knew nothing up to this point. We had talked about things "bothering him" or making him nervous. He knew he took medicine to help him with things that made him anxious. He had paras at school that helped him, and he knew that other kids did not, and he always seemed ok with that.

He knew that mom and dad went to meetings and that the other parents there also had kids with things that bothered them. He had asked why he went to doctor appointments when he wasn't truly sick, when other kids did not. And at those doctor appointments we openly talked about his diagnosis with the doctor while Jacob was in the room.

We hadn't kept it hidden. We just had never given a formal name to any of it.

 

 

So the topic of Autism had been left at that one single conversation in December. Until this morning on the way to school.

We had just rounded the corner to school and were in the back of the long drop off line. Jacob had been talking about "T" again as he had for the past few days because he was wanting a play date with him. He had given T his number and was inquiring as to why he hadn't called yet.

"T has Autism. Do I have Autism?" Jacob asked me as we entered the parking lot of the school. Could his timing have been any worse, as I knew I only had a few minutes before it was Jacob's turn to exit our vehicle.

"Yes, you do, Jacob, remember when I told you that before?" I told him. "Do you know what that means?"

"That I talk a lot!" he answered.

I laughed.

"T talks a lot, and I talk a lot," Jacob said.

"You are right. You do talk a lot! But it really means that your brain just thinks differently than other people."

The silence from the backseat made me wonder if he was paying attention or if my words had been lost again. I turned around expecting Jacob to have moved on to something else. Instead I could tell he was thinking about my words.

"Do I think different than other people?" Jacob asked me.

"Sometimes, but that's what makes you awesome," I answered.

A huge smile spread across his face.

"I have cooking club after school today," Jacob said.

He had moved on. He had the information he needed for now, and just in time as we pulled up right in front of the school.

With a quick kiss and a hug he was out the door.

Round two, had gone well. Thank goodness, because the drop off line at school can be a dangerous place if you don't follow the rules.