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.

 

Put Me in Coach, I'm Ready to Play

There are certain things that when your child is on the spectrum you have to come to terms with that they may never occur for your child. Over the years I have watched with a heavy heart as a line of adorable children file in to sing for various programs. Many times it is hard to fight back the urge to cry, as my son is not one of them.

I admit, for years I have had a selfish longing to see my son perform. Oh, he does plenty of performing on his own at home. More often than not he is on stage singing and dancing and putting on a great show daily for us. Is it wrong that just once, I would like everyone else to see this side of my son?

So the pipe dream of Jacob being in the school talent show was never much of a reality for me.

We've been talking about the end of the school year talent show since last fall. One day I received a phone call from Jacob's principal at his new school. Jacob had been having a few rough weeks adjusting to the change of a new house, school, teachers, rules, and expectations. On this day Jacob had gotten in trouble, I believe for trying to climb the bathroom stalls at school. His punishment was to spend the remainder of the day in the Principal's office.

Now the principal at my son's school is pretty remarkable. With Jacob only being there a few months, she was still trying to figure Jacob out and the best approach with him. That day he sat for hours in her office doing his work, and as a reward if he worked hard for 30 minutes he could sing a song with her.

Sure enough, Jacob did it. I can envision him jamming with his principal singing "Gangnam Style"even now.

Those days of "hanging out" with the principal, built a trusting relationship between the two of them. And I think for her, she acquired a soft spot for my son. When she heard him sing, she was amazed by his voice and sense of rhythm and timing and began to plant the seed of Jacob singing in the talent show.

This was all back in October, and the end of the school year seemed light years away. I figured it would soon be forgotten, but more often than not when we would run into his principal, she would again ask Jacob if he would be in the talent show. Each time he would smile and say "yes".

Finally about a month ago, I sat down with Jacob one night and asked him if he honestly wanted to do the talent show, because if he did, we really needed to start working on something. He told me "no" and I took his word. As much as I would have loved for him to participate, it was about him, and if he didn't want to, I wasn't going to make him.

Then one afternoon about a week later, the phone rang. Great...it was the school, which typically means Jacob is sick, or has done something warranting a phone call home. Sure enough it was his principal.

"I have Jacob here in my office, and he wants to share something with you," she said.

"Ok...." I said hesitantly, I hate to say it, but bracing for the worst.

"Hi mommy," came a sweet voice on the other end.

"Ok, Jacob are you ready?" said the principal.

And then the music started, and right behind it was Jacob's sweet voice singing for me over the phone.

By the time he finished, I was crying. Jacob had spent the morning with his principal choosing a song for the talent show. We had about a week to practice with the music his principal had sent home.

Since the elementary school is so large, there would be a preliminary talent show for each grade, and then if you were asked, you could participate in the all school show. My hopes were just for that one moment, that Jacob would sing in front of his fellow second graders. He had been practicing and practicing and had it down perfectly. But would he actually do it?

The morning of the talent show arrived, and as we pulled out of the driveway to head to school, Jacob said with a huge grin on his face, "Today is going to be the best day ever! It's the talent show!" But before I could reply his face turned to a frown and he said, "but I'm not doing the talent show. I'm too scared."

I gave him a little pep talk on the short drive, dropped him off with a kiss, and said a prayer that he would be able to do it.

I wanted that moment.

The remainder of the day I was a bundle of nerves. Finally it was time for the show, and I arrived early to help Jacob dress in his baseball uniform. As I helped him pull on his long socks, I was amazed by my son's calmness. There was no talk of being scared or backing out. Instead he exuberated a confidence I envied.

I left Jacob with a kiss, and went to join his dad, the baby sister, and Jacob's aunt on the bleachers. I was nervous for my son. What if something went wrong? What if he got upset in front of the whole grade?

But he didn't. He took the stage as if he had done it a hundred times before. He sang just as he had every time at home. He nailed it.

The second graders loved it! And as all the students cheered, tears were running down my face. But not only mine. His dad, his aunt, his teachers, his principal, anyone who knew how far Jacob had come was also crying.

I had gotten my moment.

As Jacob stood beaming on stage, his principal announced "What do you say second graders, should Jacob do the all school talent show?" And as his peers continued to cheer him on, Jacob said yes that he would do it.

I can't even begin to describe to you how I felt that day. It was a wave of emotions and memories all at once. I remembered Jacob's first day of preschool and how he cried in the doorway of the gymnasium, too afraid to even enter the assembly. I remembered all the times I fought back tears as I watched other kids take the stage at any given event thinking it would never happen for Jacob, despite his musical talents. I remembered how over the years Jacob spent many assemblies at school sitting quietly in the library, or with whomever they could find to watch over him. It was always too much for him. Too loud, too many people, too many uncertainties.

A year ago my son wouldn't have walked in the gym. And now he had just sang in front of his grade and was preparing to sing in front of the entire school!

No longer did I want the moment for me. I realized all along I had wanted it for Jacob. I wanted it to give him the confidence that he can do anything he put his mind to. I wanted it so his peers could see him do something great, something that most of them wouldn't do themselves. I wanted it so all the teachers and faculty could see what Jacob was capable of doing with just the right guidance and a little nudge. I wanted everyone to see my son for who he really is.

And I wanted the world to see what Autism is and can be.

So here it is. I am happy to report that Jacob did in fact get up and sing in front of the entire school. He truly is "Ready to Play" and I hope this gives him the confidence he needs. This was Jacob's "Moment in the Sun".

Last night at bedtime, I laid down next to Jacob and told him how very proud I was of him. I told him how he did something that many people wouldn't be able to do, how I wasn't even sure if I could do it. I told him how brave he had been. I reminded him of how before he was scared to do things, and if ever he had those feelings of uncertainty wondering if he could do something, I wanted him to remember this moment. How great it felt to have the crowd cheering. How proud he was of himself. How truly amazing he was.

I kissed him and walked to the door.

"Mommy?"

"Yes, Jacob," I said as I paused in the doorway.

"I was pretty amazing, wasn't I?"

"Oh, honey, you have no idea," I replied.

"Mommy," he said. "I know you could do it, too."

It Was Time

It's hard for me to believe it has been a year since I started my blog. Time goes so fast. No matter how hard you try to hold onto it, it slips away unnoticed.

I admit that a year ago, more days than not, I was wishing them away. We were in a bad place. Jacob's anxiety was at an all time high. Our life was in a tailspin and we were just barely staying above water.

As much as I would like to slow time down to remember each smile, laugh, and moment with my children, I can't say I would want to return to where we were a year ago. The days were long, the nights even longer. Time couldn't go fast enough. Every night was a meltdown filled with screaming, crying, hitting, and pure fear. Jacob was scared of everything at the time. I remember thinking, "Is this our normal? Is this going to be our everyday for the rest of our lives? Is this all our baby girl will know growing up as she observes her big brother?"

Last year, Jacob's meltdowns started coming more and more frequently and lasting for hours. The littlest things were setting him off. Nights were awful as Jacob's anxiety was at a peak. Every night he would cry sometimes for hours about things that scared him. And it seemed like new fears were popping up out of no where. It felt like our world was spinning out of control.

It was time.

As much as my husband and I were opposed to medicine for the longest time, we knew something had to be done. We had a prescription for anti anxiety medicine for Jacob before. We had even filled it, but after reading all the scary literature that comes with it, we opted to wait it out. But this time was different, something had to be done. Jacob's doctor had told us we would know when it was time. Our life was being upset daily at this point. It was defininetely time to give medicine a try.

No parent WANTS to give their child medicine, particularly one that could alter their personality and has tons of undesirable side effects. Jacob had never even had cough medicine in his life, and here I was going to give him something that came with a warning sheet from the pharmacy, which of course brought new worries for me.

Would it change my son including all the wonderful things I love about him? Would it make him sleepy as it suggested or change my energetic son who is always on the go? Would his tummy hurt like the pharmasist said to expect? Would my little boy no longer be the same from this day forward?

All those thoughts were racing through my head questioning if we were making the right decision as I helped my son with the syringe giving him his first dose.

That first day was hard. I was a wreck nervous for all the possible outcomes, referring back to the possible side effects sheet numorous times. But with each day it got a little easier to give my son his medicine, to where soon it became old hat.

And with each day, the meltdowns became less, the fears subsided, and my son's smile returned. 

I'm not saying medicine is the solution for everyone. I still have a love hate relationship with medicine for my kids. Sure anti anxiety medicine changed our life for the good in so many ways, and I am grateful for that. But I am still leary about giving anything to my kids.  In fact, we have a prescription for ADHD medicine that we have had for close to four months yet to be filled. We just can't do it, add another medicine to our child. I've read too many horror stories. Like our doctor told us before, we will know when it is time, and right now, it's not time.

But I know not to get too comfortable. I don't even let myself think, "Is this our new normal?". Instead I continue on the journey given to me enjoying each day and treasuring every moment while time continues to slip away.

And I thank God each day that we are in a good place, a much happier place than we were a year ago.

*Ants in Pants and Pie Thrower*

Jacob hates getting his hair cut. I mean HATES it.

When he was little, it was a source of a sure meltdown. It didn't matter if there was a promised sucker at the end. Nothing could stop it. (On a side note, I've often wondered why hair shops give kids that are covered in loose hair suckers as a reward)

Anyway, with every hair cut came a fight. I dreaded taking my son to get his haircut. As a toddler, he would kick, hit, scream, and do anything short of getting us bounced from the shop. As Jacob got a little older, and realized it was happening no matter what, the kicking stopped, but instead came the constant wiggles and fidgeting. The hairstylist all but put him in a headlock to keep his head from bouncing all around. Sometimes they are nice and just get a little snip in here and there until it is done, while others you can tell are genuinely annoyed. Many a time you can see where one snip went a little too far compared to the others, and there is a visible unevenness to his hair.

I'm sure in some haircutting database somewhere there is an asterisk by Jacob's name that says "Ants in Pants"!

And I get that he hates to have his haircut. He has Sensory Processing Disorder, so of course it is a MAJOR sensory issue. He very much dislikes anyone or anything touching his head. Getting him to take a shower for the first time was about impossible. He still has to take his time getting his head wet when stepping in the shower. It's as if he coaxes himself into it.

How ironic that the poor boy was blessed with a mop of hair. I mean thick, thick, thick hair that grows incredibly fast. At the age of six months he had so much hair, I would have servers at restaurants trying to give him a kids menu. The kid was barely starting his pureed veggies, and people assumed he was so much older by the hair on his head.

And so each time we begin mentioning that it is time for a haircut to Jacob, we are meet with much resistance. His new thing is he will say, "But I can still see! I don't need a haircut!"

But this time, he could barely see any longer. His hair was so long he had to do a flip similar to Justin Bieber to be able to see.

The other morning Jacob walked into the kitchen greeting my husband and I with a "good morning". He was dressed and ready to go for the day, and I could see he had wet his hair to get it managed for school. I tried not to laugh, but I couldn't help it. Jacob was sporting a comb over that even The Donald himself would be jealous of! My husband and I both lost it. It was hysterical. Yes, it was indeed time for a haircut.

Jacob didn't think it was funny and said, "Stop laughing at me!"

We tried stifling our laugh and explained to Jacob that we weren't necessarily laughing at him, but with him. See, that's another thing he really dislikes. Being laughed at.

But who does like being laughed at? No one. I get that. It's more being the center of attention and not understanding what is going on that bothers Jacob.

I remember vividly at Jacob's first birthday party. He was sitting in his highchair with a blue birthday boy party hat on top of his head. All of my family was crowded in our little kitchen around him and we began to sing happy birthday to Jacob. Instantly he began to scream! Of course at the time we were years from a diagnosis.

It wasn't just his birthday party he cried at. Any time the song "Happy Birthday" was sung, Jacob burst in to tears. This went on for years! Just in the past few years have we been able to actually sing at parties in our house.

But it wasn't just parties. Many a time I would be pushing him as a toddler or preschooler through the check out lane. The cashier would be smiling at Jacob lovingly and maybe even make a comment about how cute he was, when sure enough he would scream, "STOP LOOKING AT ME!" Ah...such a cute thing to come out of a 2 year old's mouth.

He used to lunge at, hit, or kick when he thought someone was laughing at him, or looking at him. Thankfully over the years he has gotten over that impulse and can now control it.

Just this past Christmas at our church's service, Jacob wanted to go up and sit for the children's sermon. He had never done it before and I was nervous and proud of him all at the same time. It was something he never would have done a year ago. Heck, he couldn't even make it through a service a year ago. The pastor asked the kids a leading question, one as an adult you know will bring funny responses. Sure enough, Jacob raised his hand super high and got called on. And sure enough, his response got a laugh from the congregation. I watched as that all too familiar look came across Jacob's face. He looked around wondering what was so funny because to him, his answer had been quite serious. In just a split second I said a silent prayer, hoping that he wouldn't scream out, or worse yet hit the pastor sitting next to him. Thankfully the congregation laughed at another child's response and I saw Jacob visibly relax in front of me.

So yes, for the most part he can control it. But every once in awhile, something still happens.

My husband had volunteered to take Jacob to get his haircut. Not sure if volunteered is the correct word, and I do admit that this task is typically reserved for him. He made a reservation so it wouldn't be as long of a wait.

It didn't take long, and they returned, Jacob with a pretty good new hair cut. At least no major chunks taken out.

"How was it?" I asked my husband.

"Well..."

He went on to tell me how Jacob was wiggling all over. Wouldn't sit still and they were having a very hard time cutting his hair. And then right in the middle of it, a huge crash came from the backroom. Apparently the entire shelving unit holding all their hair products completely fell over. I'm sure it was a huge crash, and probably made Jacob even more unsettled than he already was. So then the hair stylists where all laughing and discussing it, when Jacob got upset and yelled, "Stop laughing! I'm going to throw a pie at your face!"

Yeah...he's not exactly the best at knowing what to say when upset or frustrated.

I'm sure they had no idea what was up with this kid or why he was threatening to throw a pie that was no where to be seen. At least "haircut" can be crossed off the list, for a few weeks anyway. I'm guessing they will be ready for Jacob next time, as I'm sure the asterisk was added after he left.

*Ants in Pants and Pie Thrower*

Make new friends, but keep the old...

"Mommy, Guess what? J is coming over after school today!"

That's how I was greeted on Tuesday when I picked up my son. I knew nothing of J, nor did I know anything about him coming over after school. Nor was I really in the mood as I was incredibly tired and a little cranky. I knew to tread lightly as we have had this conversation many times over the past few years. And more often than not the friend knows nothing about the "playdate" Jacob has arranged.

"Jacob, I'll have to talk to J's mom to see if that is ok. Maybe he could come over tomorrow," I reply.

"But mommmmmmm....J said it was ok!"

"I don't even know who J is, Jacob."

"Yes, you do mommy. He's my best friend."

I start maneuvering Jacob toward the car and as we get closer, he yells out, "There he is! J are you coming to my house?"

Ahh....I do know J. He is our new neighbor boy. I just hadn't put it all together. I look toward this new boy curious as to his response. Is he turned off by my overly excited son? J keeps walking and just as I think he is blowing Jacob off, he nods his head yes.

But there are errands to be ran. A quick trip to the grocery store, and a drive through the bank. Jacob wants nothing to do with it. Somehow I convince him that J will be waiting for us when we return home. He's our neighbor. He has to turn up sometime, right?

No sooner do I pull in the drive way, and Jacob is out the door yelling, "J...J...where are you?" He turns to me and says, "Mom, he's not here." He opens the front door to our house and proceeds again to yell out J's name as if the boy would be waiting alone in our new home.

I wrangle up the baby girl and my groceries and head inside, but before I can say a word, Jacob is out the door sprinting over to J's house. With my arms full, I have two choices. I can drop everything and insist he come back, or let him go. I am too tired for the fight, and I figure he will return if J is not wanting to play.

It's a nerve racking time right now for me. I worry so much about Jacob at his new school and making friends. There are so many boys on our block all about the same age. They are a tight group, you can tell. And much more worldly than my naive son who still is content with watching the same television shows as his two year old baby sister. Will these new boys accept my son? Will they be patient and forgiving? Only time will tell.

It doesn't take long for the front door to open. It is Jacob with J close behind, as well as the other neighbor boy. They run in the front door in such a flurry of activity, heading down to the basement without hesitation. They are loud. Very loud! As I listen, I realize it is Jacob who is being the loudest. He's anxious, excited, and nervous, wanting these boys to like him. My heart aches for him as I can feel his need for acceptance into this group. At the same time I am elated that my son is so wanting of these friendships.

Many times when you read about people with Aspergers, you read how they are loners, preferring to be by themselves. I can't speak for all, but with Jacob nothing could be further from the truth. He wants nothing more than to form those friendships. To have that closeness that only a true friend can bring. He just has no idea how to do it. Typically he comes on too strong too fast, becoming obsessed with the person.

As I listen to the boys playing basketball in the basement, I can tell that is the case. I anticipate his new found friends wanting to leave, possibly annoyed by Jacob. Yet they continue to play with no fighting or arguing.

A little later, the three boys ascend the stairs. The one asks Jacob where his bedroom is, and they go bounding up the stairs. That's when I hear Jacob say, "This really isn't my bedroom. My room is in the basement."

"Oh yes, Jacob. You are waaaaay too cool to have a bedroom UPSTAIRS," I think to myself as I stifle a laugh.

The night continues with Jacob and his new buddies coming and going over and over, sometimes adding new friends along the way. It is a crazy night and Jacob is bouncing off the walls with excitement as he runs from house to house. It takes a while to calm him down at the end of the night.

The next day, as I am waiting to pick up Jacob from school, I know that I will be faced with the same crazy almost manic excitement from Jacob. Sure enough, the first thing he says to me when he exits the building is, "Can J come over and play?" "We'll see," I tell him, as I try to listen to his teacher fill me in on his day, a day that sounds like Jacob has been running on full speed.

Again as we pull in our driveway, Jacob bounds out the door adamant he is going over to a friend's house. Some how I convince him to come in and have a snack first and see his dad and sister. But it is short lived, and he is out the door.

It doesn't take long before he returns. Apparently he was running from room to room in their house, and the neighbor boys asked him to leave. Realizing he left his shoes, Jacob sprints back over and quickly returns. He proceeds to tell us that the neighbor boy said it was "ok" that he had been running all over the house after Jacob apologized.

That's a tough one for us. We've tried explaining to Jacob that when someone says ok after he apologizes, they are not saying it is ok for him to continue the behavior. But that's all it took and Jacob was insisting this meant he could go back over and play. I decided to walk over with him and hear first hand what had taken place.

Before Jacob could just run into the house, I insisted he knock. Together we stood outside the door, my son waiting as patiently as he could hopeful for an invite inside. He knocked again, and this time I heard running inside. Jacob heard it, too. "They're coming!" he said. But the door never opened. Jacob knocked again, and again I heard the sound of footsteps scrambling, but no door opening.

"Jacob, let's head home," I said gently.

"Mom, they are coming. They want to play with me," he replied.

My heart ached for my son. I knew what was happening behind the door. But no gentle prodding could make Jacob budge. Instead he now had changed courses, believing that the boys must instead be at another house.

"Jacob, just come home."

After getting Jacob inside, he started screaming and running around the house having a huge fit, something we hadn't seen in months. He was mad at my husband and me, not wanting to believe that his new best friends didn't want him to join them. I tried explaining how these boys have been friends for a while, and probably just wanted to spend time alone together like they used to. But no matter what my husband or I said, Jacob just became more and more enraged. He tried fleeing out the front door. He slammed doors. He threw his shoes. He yelled, and yelled, and yelled.

"Jacob, are you ok?" my sweet baby girl asked in her squeaky little voice. "NO!" he yelled back. Scared from seeing her older brother this upset, the baby girl begins to cry as well. I hate that she witnesses these things no matter how much we try to shield her. I was on the verge of tears myself, and I could tell by my husband's expression, he too was feeling beat down.

My husband got Jacob calmed down, redirecting him to a project of finding pictures online of all his favorite baseball players. Jacob's fits are exhausting for everyone.

As I made dinner, listening to the familiar "eeeee" sound of Jacob concentrating on the computer, I found myself longing for the comfort and quiet of our old neighborhood. Longing for Jacob's old neighborhood friends who knew all his quirks. Our adult friends who have seen Jacob through all his good and bad. The comfort of knowing it doesn't matter how my son acts, because they all know where we have been and how far we have come.

With that being said, I know what must happen. We have to fill in the new neighbors about our son. I don't blame the boys one bit for not wanting to come to the door. Jacob is not exactly an easy playmate. But hopefully by cluing in the parents, it will help guide any conversations they have with their kids about our son.

I know that no matter what, Jacob will be fine. He's a sweet and loving boy. And even if these "new best friends" are not here for the long haul, Jacob will find his own place to settle in.

And as I go to bed, that old familiar Girl Scout song enters my head.

"Make new friends, but keep the old. One is silver and the other gold."

 

Never let the Fear of Striking out, Keep you from Playing the Game

I'm sure the guy had no idea. I'm guessing he saw a dad with his young son at the ballpark ready to spend an enjoyable evening together when he graciously stepped up to my husband who was waiting in line and asked if he needed tickets. My husband was taken a little aback, expecting that the man was trying to sell them to him. What a great surprise when he realized they were a gift. Two tickets right behind the home team's dugout!

Or maybe the guy did have some idea. Maybe the large headphones atop Jacob's head drew the man to my son. I'm sure Jacob was waiting impatiently, so maybe he thought he would give this dad a break. Maybe he could sense my son's nervous demeanor, or could see that anxious look in his eye.

I'm sure Jacob was nervous. It was only his second game of the season. Certainly not the second game he has watched. He has watched and re-watched almost every game by his favorite Major League team this year. But going there is a whole different ballgame for Jacob. There no longer is the security of home, and he has to face his fears head on.

The first game my husband took him to, Jacob did great. It was a surprise and he packed him in the van and didn't tell him where they were going until they were almost to the stadium. There wasn't time for Jacob to get too anxious. He did excellent and when Jacob called to tell me about the game, I could hear in his voice how proud he was of himself. About halfway through the game he started getting a little nervous. His team was winning, and he knew that meant fireworks at the end of the game. He started asking for me, saying he wanted his mom. When that approach didn't get him results, my ever thinking child began cheering for the opposing team. What a logical approach. If the other teams wins, no fireworks! But his favorite team ended up pulling it out. They stayed the entire game, even for the fireworks at the end. Sure my husband had to hold him down through some kicking and flailing and attempts to flee, but Jacob did it.

Knowing that Jacob's psychiatrist had recommended he attend as many games as possible, he was due to go to another game. It had been a few weeks since that first game, and it had gone fairly well, so it was time to try again.

My husband came home from work, and told Jacob to change his clothes and put on one of his favorite baseball jerseys. Jacob went in and changed, but didn't make the connection until he saw his dad changing into his team wear as well.

"Daddy, are you going to the baseball game?" Jacob asked.

My husband looked at me wondering how to handle this. Do we tell him and risk the impending meltdown? Or do we continue the surprise effect to ward off any anxiety until there?

"Yes," my husband said, "and you are going, too." My husband and I were both holding our breath, waiting to see how this would play out.

"No way...," Jacob replied, but as he said it a big smile formed on his face.

That was it? No fighting? No insisting on staying home? No kicking, screaming, door slamming, running, or hiding, just "no way" and a smile. Wow!

Jacob has made HUGE progress in the last few months. It has confirmed for us that we made the correct decision starting him on anti-anxiety medicine. Sure, you could tell he was still a little uncertain, but there wasn't that crazed panic that we had seen so many times in the past.

Jacob calmly helped his dad pack a bag of treats for the game. He calmly got his stuff together, kissed me goodbye, and started talking about the game's potential outcome. Someone unfamiliar with Jacob's Aspergers and anxiety would have had no idea they were witnessing something truly amazing, and would have seen it for what it was, a dad and son heading out to the ballpark.

According to my husband, Jacob did wonderful at the game. Although a little more nervous this time walking in, his nerves were quickly calmed. As his team made hit after hit and was dominating the game, Jacob gave everyone around him high fives after each play, including the man who had given them the tickets.. Jacob even made it on the jumbo tron, just him waving at the camera with a huge smile on his face and headphones covering his ears.

My husband said the seats were great. Being right behind the dugout, Jacob was able to see all his favorite players up close. And at the end of the game, my husband yelled out to one of his favorite pitchers, who seeing Jacob grabbed a ball and tossed it up to him. Jacob came home all smiles talking a mile a minute thrilled with his "real major league" ball. And when he told me about the fireworks, it was as if it was a non event.

I hope while sitting next to my son, the generous man who gave my husband the tickets realized that out of all the potential people he could have chosen, he couldn't have made a better choice. I hope he realized how incredible my son is. I'm guessing by the end of the game, he knew that Jacob wasn't your typical young fan. I'm sure it was obvious my son's love of the game and his team. And I'm sure he enjoyed my son's knowledge of the game. I'm guessing he didn't know my son has Aspergers, but probably knew there was something different about my son. But I'm sure he didn't realize the battles and struggles it has taken for Jacob to get to this point.

This kind stranger witnessed a treasured moment. A treasured moment between father and son. An evening together at the ballpark, something taken for granted by so many dads, but not my husband. This moment, is one my husband has dreamed of for a long time.

The Land of the Free and the Home of the Brave

The Fourth of July always brings back such vivid memories for me from my childhood. Every year, our family would pack up our travel trailer to go camping with our extended family at a local lake about twenty minutes from home. The town itself was small with a population of around 250 people. But it was our vacation every year, and I relished it, each year counting the days to it's arrival knowing that it would be a fun filled week spent with all my cousins.

It was a simpler time. I feel so old saying that. There were no Iphones to interrupt. No televisions. No laptops. And no air conditioning for cooling.

My days were spent running around a campground with my cousins. We'd walk the mile or so to town to get penny candy from the only store. I swam in the murky water to cool down from the heat of the day, despite the fact that I had no idea how to swim and my parents were no where to be found. We were free. We had the campground at our disposal. The park was our hang out with it's old rusty equipment. I can still envision the much too tall metal slide with no slide rails ending at a huge hill. Really, what were they thinking?

My nights were spent sitting around the campfire drinking Shasta pop and eating s'mores while listening to the adults tell stories I didn't understand. Each night we would do sparklers, and my cousins and I would dance around like fairies writing our names in the dark sky. And on the Fourth, we would all pile in someones station wagon with blankets in hand, and head out to watch the local fireworks in the school's football field. The fireworks were always my favorite, but also a reminder that the week was drawing to a close.

When your child has Aspergers, the Fourth of July takes on a new meaning. Clear back in March, Jacob started worrying about the celebration. We spent many nights trying to calm his fears about fireworks that were months and months away. Tears, meltdowns, and panicking for what seemed to us as no reason. I always told him that we would worry about it when it got here.

Well, it is here. Today is the Fourth. No, our day hasn't been filled with any true celebration. No parades or small town fair for us. So far today is just like any other day with Jacob over at his friend's house playing. Jacob knows what the date is on the calendar. But his focus is more on tomorrow being his birthday. How ironic is it for a boy terrified of fireworks to be born so close to the holiday known for them.

But he's come along way, my brave boy. With the help of his psychiatrist and his anti-anxiety medicine, he has been watching fireworks on the computer with no problems. He's even attended baseball games with fireworks with little anxiety. He can talk about fireworks now without getting worked up. But tonight will be the big test. And as the day wears on, his anxiety may just grow because typically for Jacob the anticipation of the event is worse than the actual event.

While eating breakfast this morning, Jacob suddenly ran to his room and returned wearing his oversized headphones. He sat back down at the table with no mention of them covering his ears, eating his breakfast as if nothing had changed. I approached him cautiously. Were the fears of July Fourth returning? Were we in for a long day?

"Jacob," I asked pulling the headphone away from one ear, "Why are you wearing your headphones?"

"In case the baby sister decides to scream," he answered matter of fact and continued eating his french toast.

Hmmm....good answer and rightfully so as she was upset about getting milk instead of juice. I sighed with relief realizing it wasn't an early preparation for the impending fireworks. Maybe today will be fine after all. We'll see what the night brings.

Last night Jacob wanted nothing more than to go over to his cousin's house. They had told them they had "silent" fireworks, and surprisingly Jacob wanted to see them. Last year he wouldn't have been able to handle it. The conversation on the phone would have been enough to send him into a meltdown. But he wanted to see them, and he even had a plan for what he wanted to do with them. His idea was to have his cousins light the "silent" fireworks, (which really were just more like sparklers that gave off colored smoke), and he would run the bases like his favorite baseball players.

He did it and had a blast. But then he saw his two year old baby sister holding a sparkler, and he wanted more. He wanted to try it, too. My brave son was pushing himself further. And he did it! My son held a sparkler! He even wrote his name in the sky, just as I had many years ago. Something that would have sent him running to the car pleading to go home last year, and he wanted to do it and did! He was proud of himself and was beaming.

We left for home shortly after that. As we walked out the door, you could hear the booms of fireworks off in the distance. Jacob asked me what it was, and I tentatively told him the truth expecting panic to rise in his voice. Instead he surprised me and said it didn't bother him and continuted walking to the van.

As I tucked him into bed last night, Jacob wanted to hear stories from when I was a child. When I finished telling him, he said, "Mommy, I wish when you were little I could have been there and we could have played at Grandma's house."

I kissed him on the head and said, "I wish that, too."

I do wish that. I wish my son could have that same freedom I felt as a kid. Free from all the fears bottled up inside him and the anxiety that continually surfaces. Free from the worries giving him the ability to try new things without hesitation. Jacob's come along way though in just a few short months. And maybe next Fourth of July he will be truly free.

My Little Space Invader

My son has separation anxiety. If you have a child with it, you don't need to read any more. You live it, you get it completely. If you don't, I am guessing you are thinking that he gets upset and cries when I leave him.

Yes, you are correct. But it is soooo much more.

We are close, my son and I. When I say close, I don't just mean a close maternal bond. My son is physically touching me most of the day. There is no personal space for me. My space is Jacob's space.

Every morning at around 6:30, I am woken up by one of the sweetest little boys. He climbs into bed beside me, and says, "Good morning, Mommy." Sometimes he kisses me. Sometimes he simply turns on the TV. But always, no matter how far apart we start out, he eventually is touching some part of my body. His little toes will inch over until they are touching my leg. Or somehow we will suddenly be sharing a pillow with his warm breath on my cheek.

I get out of bed knowing I must take a quick shower before the baby sister wakes up. I tell Jacob the same thing every morning. "Jacob, I'm going to be in the shower. Where am I going to be?" to which he answers, "In the shower." No sooner do I get the water started and step in, and there is Jacob "checking" to see where I am or asking some kind of question. Only a few minutes have passed and already he is searching me out.

The day proceeds like this. Wherever I go in the house, Jacob is right on my heels. If I go into the kitchen to make breakfast, he quickly follows. And usually his baby sister is trotting right behind. Go downstairs to the basement to do the laundry? Jacob follows me down and then back up after I finish. Use the restroom without an audience? Unheard of! Even if I lock the door, he is waiting outside or knocking on the door, "Mommy, are you in there?" Sad to say, there are some days I want to not answer just for a moment to myself.

But if he doesn't know where I am, he goes into a panic. One day while he was watching TV with his sister, I told him, "Jacob, I am going to go outside and get the mail." Our mailbox is just across the street, and only takes a minute to get. As I opened the front door returning, I heard his feet running the length of the hallway and him yelling for me. "Jacob, I'm right here," I said as I entered the door. "Oh, I was worried you were dead!" he tells me with a big sigh. Now why would that be your first thought?

Oh, we've tried giving him rewards for playing in his room alone. We've set timers, done sticker charts with great prizes for a few precious moments alone. It works somewhat. I guess it depends on what your definition of success is. If it is Jacob laying in the frame of his door sprawled into the hallway asking if the five minutes is up yet, then yes, it is a success.

There is no playing on his own, unless it involves electronics or chasing his baby sister up and down the hallway. Playing alone to him is a punishment. It's always been this way. We are his entertainment committee day in and day out. It gets exhausting. There is no luxury of our child going into his room on his own to play giving us a clear mind to catch up on daily chores or just take a five minute cat nap. The only time I have for myself is after 9:00 pm once the kids are in bed. Even then when I tuck Jacob snugly into his bed, he wants to know where I will be located in the house. The other night we were cleaning out the garage after we had put the kids to bed. Jacob refused to go to bed and instead sat in the living room until 11:00 despite how tired he was, just so he could be closer to us.

Oh, you might be saying, "But isn't that part of parenting?" I get that. Yes, becoming a parent is self sacrificing of your time and energy. But I'm talking about 100% of my time. Every minute of my day Jacob is a part of, right beside me, needing help with something, wanting something, asking something, or just simply wanting to be near me.

And trust me, it is not that he is lacking for attention. My husband and I play plenty with him. If it was up to me, I would play all day. But the reality of life is that there is work to be done, bills to be paid, dishes to be washed, dinners to be made, all of which gets done with Jacob right by my side.

Moments alone are precious. My husband and I try to give each other needed breaks. Time alone together is about impossible unless Jacob feels comfortable with whom he is staying. Even just having a minute alone with my husband to talk about something important is impossible without Jacob interrupting or being in the room.

Things that other kids enjoy are a nightmare for Jacob. Summer camp? No way is he staying without me. Swim lessons? Again, not going to do it.

But his psychiatrist says he needs to do these things. I get that, and I agree. I also know how hard it is to pry him away from me with a two year old in tow and no one on the receiving end who understands the circumstances. At school they at least "get" that part about Jacob. If they see he is struggling and not wanting to disconnect from me, someone steps in and will physically pull him away from me toward the door. I hate leaving him like that, but I know it is for his own good. But when the person on the receiving end is just a random person unaware of Jacob's separation anxiety, I am at it alone and sometimes it is about impossible.

Last summer at our health club, Jacob didn't want to stay in the kid room despite their own basketball court, Wii games, and huge playground. So what did he do? Opened the door and ran down the hall to find me. They had no idea he had left. He hasn't been back since.

I've learned in the last year to hand him off to someone and fill them in on Jacob and what he is capable of doing. It makes it easier on him if he connects with another adult. And it makes it easier on me prying him away from my leg.

It's been a hard week at our house. Although I miss my son terribly while he is at school each day, I see how important it is for him to have that time away from me. And how important it is for me! When you have someone physically touching you all day long, following your every move, and all the while talking your ear off, you just want your own space and your own thoughts if only for a minute.

Jacob tells me he is going to live at home forever because he never wants to leave me. I'm starting to believe that it could be true. But who knows what the future brings. Maybe the tides will turn once he becomes a teenager and he no longer will want to be close to his mom. Maybe he will shut himself up in his room alone, tuning the rest of the family out typical of every other teenager in America. 


So as hard as it is, for now I must embrace it. He won't be little forever. 

"I Just Don't Want to Be in this World"

"I just don't want to be in this world."

Hard words to hear your six year old say to you. How do you even reply to that? A six year old should never have those thoughts. As I tucked Jacob in bed again, I went through every reason why he should love this world. Everything that is good about this world. And everyone who loves him in this world.

I then went on with tears rolling down my face, telling my son everything that was good about HIM, and all the wonderful qualities he possesses. He really is an incredible kid. I know everyone thinks that of their own children, but Jacob really is special. Aside from his anxiety, he is a true joy. He's funny, creative, and so smart it amazes me. When his anxiety is at bay, that's when he really shines.

It's a helpless feeling when each night your child is terrified by things that you can't even comprehend yourself. Last night he had two things bothering him. He couldn't stop thinking about the sounds that a computer game at school had made earlier in the day. And balls rolling down our hill. Balls rolling down the hill are an every night worry. "Why couldn't the street just be made of grass?" he wondered his eyes so heavy with sleep wanting nothing more than his brain to stop so they could rest. "That would be an easy solution."

But was that what was really bothering him?

As I laid in bed with him trying to calm him listening to him weep, he told me about recess that day. "I wasn't very good today, Mommy."

"What does that mean, Jacob?" I asked. Had he yelled at a classmate? Had he gotten upset at school? There wasn't a note sent home. There was no phone call.

"I lost in soccer."

"Jacob, honey, that's no big deal," I said relieved that's all it was, but not understanding the real problem.

"No, Mommy. I was on the team all by myself and I lost 12 to 1."

"But why were you on a team all by yourself? You can't play on a team alone," I inquired.

"There were three kids on the other team, and just me on my team. No one wanted to be on my team. And it was just too hard, I couldn't do it."

Deep down is THIS what was really bothering my son tonight and not the computer noises or rolling balls? All the times that I watch my son at recess play soccer and think he is being included, is he really being pushed aside? We talked about what he could do next time. How he could handle it. And how the teams needed to be even. Inside I was fuming. How dare these other kids exclude my son. It's not that he stinks at soccer. He is actually quite athletic. And where were the teachers? Oh, yes, the mama bear was coming out in me.

Thankfully after some snuggling time, Jacob was able to settle down and sleep. Me, that was a different story. I couldn't stop thinking about what Jacob had said.

Six year old's should be thinking about Spongebob. They should be counting the days to summer vacation. They should be carefree and worry free. They shouldn't be so consumed with fear and worry that they wish not to be in this world. It terrifies me that at age six, Jacob already thinks being somewhere else is better than dealing with his pain. If he's thinking this at six, what will he be thinking at eleven, sixteen, thirty? I wish this world was easier for my son. I wish it was a world that readily accepted him.  It was hard for me to shake. Sleep did not come easy, and I lent my dreams to a better world for my son.

Each morning when Jacob wakes, it's as if the previous night hadn't occurred. When he woke this morning, there was no mention of balls rolling down streets, strange computer noises, or any of his fears from the last week. Only talk of baseball and predictions for the outcome of tonight's game. And then something was said about recess. He talked again about no one wanting to play with him, and when he asks they all say no. He said instead of playing soccer today, he was going to play baseball. Knowing that "playing baseball" at school meant Jacob would be playing his own pretend game in his mind, shutting himself off to the rest of the world, I tried to persuade him to give soccer another try. I went through all kinds of different scenarios as to what he could do so he wasn't alone on a team. And then he said, "I'll take care of it, Mommy. I got this one."

Maybe he could sense my worry. My desire for him to fit in and have friends. Maybe he thought the last thing I need is my mom calling the school forcing someone to be on my team. And so I let it go with no more mention of recess or friends.

Later as I was driving home this morning from running errands with the baby girl, I noticed it was recess time. I opted to take the longer way home to hopefully get a glimpse of Jacob. There he was on the soccer field running his heart out. I paused just long enough to get a good look without appearing suspicious. (A van parked outside a school playground never looks like a good thing). And as I paused, I saw Jacob smiling and giving his buddy Hank a high five for scoring a goal.

Yes, he was part of a team. He had handled it perfectly.

Cinco de Mayo, Supermoon, and Other Scary Stuff

To say that my son doesn't take to new things is an understatement. Jacob doesn't like anything new or different. It doesn't matter how we try to sugar coat it, if it is new, he wants nothing to do with it.

Last week our neighbor mentioned getting a bunch of people from the neighborhood together for a Cinco de Mayo party. Nothing special, just food, drinks, and gathering together outside. Usually Jacob loves this kind of thing. He's all about yummy snacks and playing with his friends. It is something we do fairly often, just families hanging out together outside on a nice night. But I made the mistake of calling it a "Cinco de Mayo" party.

"I'm not going," Jacob told me.

"Jacob, why?" I asked. "You love when we have parties outside. I'll make something yummy. You can play with your friends."

"NO!" he yelled, "I don't like Cinco de Mayo."

Why hadn't I just called it a party. The word "party" was fine. Jacob new his role. He knew what to expect. It was all familiar and something he enjoyed. I had opened a can of worms, and there was no going back. So for the next hour or so, we discussed in detail the what a Cindo de Mayo party entailed. From already taking two years of Spanish classes, Jacob knew what the words meant. But he was still nervous. He was scared of the Cinco de Mayo party. What if it got dark? What if someone played basketball and a ball rolled out in the street? The worries kept coming. After close to an hour of explaining what the party would look like, Jacob was satisfied enough to go to bed.

The next day I made no mention of the party. Nor the next, or the next. I was waiting as I knew Jacob at some point would bring it up again. He doesn't forget anything.

So the day before the party he asks, "Mommy, what are you making for the Cinco de Mayo party?"

Whew! That was my green light that he was ok with it and had worked through whatever was bothering him about it. The Cindo de Mayo party was no longer a threat.

But there's always something else menacing out there.

Oh yes, the ever-threatening Supermoon was also going to be the same night as our party.

I knew I dare not mention it, despite my son's love of the moon since he was a toddler. Whenever we are out at night, Jacob is always searching the sky for the moon. It becomes a competition to see who can find it first. He can tell me if it's waxing gibbous or waning gibbous. Where I still have no clue, and just say full or crescent.

But this time I knew better. I had learned my lesson from adding Cinco de Mayo in front of the word party. There would be no "super" in front of our moon. So I made no mention of the moon that everyone was talking about. We made our treats for the party, and headed over to see our friends.

Jacob had a blast! He ran around with his friends, tried all the food, and pretended to be the server talking to everyone at the party. He even participated in the parachute which he hasn't done since his second birthday. That was a very proud moment for me seeing him laughing with the other kids as they shook the parachute and took turns running underneath.

And as the day became night, and the party began to wind down some, I went in search of my son. I found him inside with his friends playing the Wii. And that's when the Supermoon talk began. His friend who was anxiously awaiting the Supermoon mentioned something about it, and it set Jacob off.

"What! I don't want to see the Supermoon! No!" he said the panic already setting in. I knew things were about to get out of control quickly, so I phoned my husband who was home putting our baby girl to bed informing him that Jacob would be home soon and of the impending meltdown due to the moon.

"Jacob, it's fine. It's nothing to worry about. There's no moon," I told him as I guided him outside."

"But I don't want to see the moon!" he said loudly his panic rising as we began our walk through the party.

As we walked down the driveway, there was moon talk everywhere around us. I could feel Jacob stiffen in my grasp as I saw the moon brightly shining through the trees. A well meaning neighbor unfamiliar with Jacob's fears  must have heard Jacob say moon, and said to him, "You want to see it? It's right there."

I quickly intervened, "Oh no. There's no moon here in the city tonight. That's just a street light," and as fast as I could I guided Jacob across the street to our house where my husband was waiting, thankful that the tree shielded his view of the Supermoon.

The thing is, had Jacob seen the moon on his own he would have thought it was the coolest thing ever. He would have proudly pointed it out and we would have discussed how awesome it looked. But just hearing that word "Super" in front of it, made it scary. Something was different about this moon to draw so much attention and a new name, so therefore his guard was up. As much as I would have loved to share that moment of looking at the Supermoon with my son, it was better to just put him to bed. As I laid beside him in his bed, his little eyes could barely stay open, yet he continued to cry fearful of a terrifying moon. I can only imagine in his mind what he had envisioned a Supermoon to be.

The day was done with  no major meltdown to mention. They had all been warded off somehow. What would tomorrow bring? Oh yes, that's right.

Thunderstorms!