The Headphone Wearing Ghost

There's been a lot of ghost talk at our house lately. I'm sure it stems from the plethora of Halloween decorations littering the stores for the last month. Or it could be the "Franklin's Halloween" video the baby girl picked from the library the other day, only to be terrified of it. She quickly learned she did not like ghosts! But Jacob on the other hand has taken a new interest.

The other night while laying in bed, Jacob announced he wanted to make a haunted house at our house. My husband jumping at the chance to discuss something other than baseball or animals, and laid in bed with Jacob for close to an hour filling him in on the haunted houses he created as a child. Jacob couldn't get enough. Finally after 10:00, the haunted house talk ended, and thankfully after all the ghost talk Jacob fell fast asleep.

I figured it was a one time event, but sure enough the next morning, Jacob was raring to go with all kinds of ideas on making a haunted house.

"...and Mommy, you could be a ghost, too. You would make a great ghost!" he told me in between bites of oatmeal at breakfast.

"I scared of ghosts," the baby girl said unbeknownst to me that she was even listening.

"It will be soooo cool," Jacob went on, "We'll invite everyone to our haunted house!"

"I scared of ghosts," again the baby girl chimed in.

"Jacob, just eat your breakfast," I said. "We have plenty of time to figure it all out."

In a way I agree, it would be cool to plan something fun and get Jacob involved in something different than the norm for him. But deep down, I know that there is no way Jacob could handle a haunted house. He really has no concept of what a haunted house actually entails. Sure it would be his own creation, so it would only be as scary as he made it. But what is "scary" to Jacob is very different than what is scary to other kids his age.

Take what happened at our church nursery just two nights before. I was working a night shift and had both Jacob and the baby girl with me. There were other kids Jacob's age there, and they were all playing hide and go seek outside. I was sitting there watching the smaller kids play, when all of a sudden I heard that familiar wailing sound.

"Ahhhhhhhhh!" I heard from under the slide.

Instantly I knew it was Jacob. It is the exaggerated sound he makes when slightly hurt but wanting attention. Ignoring it is not an option, as he will just get louder and draw even more unwanted looks his way. At home, it is easy to ignore. But here, I didn't want his peers to see him have a moment, so I stepped to the slide to investigate.

"Ahhhhhhhh!"

"Jacob, what's wrong?" I asked.

"He scared me!" Jacob replied.

Turns out that one of the kids jumped out and yelled "Boo!" in Jacob's face. It caught Jacob by surprise, and he screamed.

And here he was just a few days later thinking he was all brave to have a haunted house. Yeah, right!

I thought I would just let it ride and see where it went. Sure enough right after school, Jacob had more haunted house and ghost talk. My husband's idea was to maybe find a video of a haunted house someone had created and share that with Jacob to give him a better idea of what he would be in for.

So as my husband sat on the couch searching for just the right youtube video of a haunted house, Jacob anxiously sat at the end waiting to view. Just as my husband thought he had found a winner, Jacob bursts out, "Turn it off! It's too loud!" as he covered his ears.

"Jacob," my husband said, "I told you that haunted houses are loud. Remember?" as he switched off the video.

"I have an idea. I'll just wear my headphones!" Jacob announced.

"hmmmm...I'm not sure I have ever seen a ghost wearing headphones before," my husband replied.

This made me chuckle. I could so picture Jacob wearing his big red noise-cancelling headphones atop his head that was covered by a white sheet. Not sure how scary that will be for the new neighbor kids.

Later that night, we were all outside with the kids playing. I noticed Jacob was missing, and I opened the front door to our house. "Jacob, are you in here?" I yelled.

"Welcome to my haunted house!" he said as he popped out from behind the door.

All the lights were turned off and the blinds closed. It was somewhat dark, but as the day gave way to night outside, there was still enough light filtering in to show the toys scattered across the living room floor and the dinner dishes still stacked on the kitchen counter.

As he stepped outside with plans of rounding up the neighbor kids to take a tour through the "haunted house", I somehow convinced him that we should save it for closer to Halloween. He's having enough trouble fitting in with the new neighbor kids, I don't need them laughing at a haunted house they feel is babyish.

It's times like these that I realize how very immature Jacob is compared to his peers. In his mind, entering our dark house is terrifying. Just the other day one of our new neighbor boys made reference to hurrying home to watch "Nightmare on Elm Street" for the first time with his dad. We are no where near that, nor do I want to be as I don't like that thing myself. But as Jacob's peers mature, it becomes more and more evident how developmentally and behaviorally he is behind.

In fact, last night while at our Aspergers support group, they gave us the statistic that children on the spectrum are typically at a developmental age of 2/3 of their actual age. So with Jacob being 7, his developmental and behavioral age is closer to 4 1/2 years old! That explains a lot! And I would say that is right on. But that doesn't make it easier, especially when academically he is beyond his actual age, but his maturity level is close to 3 years younger.

As we were walking in to the support group last night, Jacob needed to use the restroom. He pushed open the door, and instantly I heard the familiar "Ahhhhhhh" sound. The lights were off and it was completely black in the restroom, and Jacob was scared.

I'm thrilled that Jacob is branching out and wanting to try something new that is a little scary, but I'm thinking the haunted house may have to wait a year or two. Although a headphone wearing ghost could be quite comical! But for now I'll tuck Jacob's headphones away in his drawer, and hope that the ghost talk subsides on it's own.

WHAT! There's a list?

"So where are you guys on the list?" Jacob's psychiatrist asked my husband and me, as we sat in the cramped little room on the not-so-comfy purple vinyl bench we have come to know well over the last few months.

Before we could answer, Dr. Two turned to her computer I'm assuming to check our list status, while my husband and I both instantly looked at each other. We both knew what the other was thinking without saying a word.

"What list?"
"Did you know there was a list?"
"I didn't know there was a list."
"Are we on the list?"
"How are we NOT on the list?"
"How do you get on the list?"
"Again...what list?"

Dr. Two turned back around in her swivel chair facing us. I'm sure our expressions answered her question, that neither of us knew anything of this so-called list.

"Ohhh....that's right...you are the ones that came in the back door," she said figuring out why our name was no where to be found on the mystery list.

She was right. We hadn't exactly gone about getting into the hospital Developmental and Behavioral Sciences Department the usual way. I had made numerous calls over the years to the hospital inquiring about getting Jacob evaluated. Usually it was after a particularly challenging day with Jacob, but each time I called, I was always put off by the year long wait just to be evaluated. Plus at the time we were still somewhat in a denial stage.

And then I remember the time I called when he was five at the end of Kindergarten. This time I was at my wits end, and ready for a diagnosis even if it was a year wait. I called the hospital again inquiring as to an evaluation. I briefly informed the person on the other end of the phone about our concerns, and before she had even asked my son's name, she asked me, "So do you want an Autism diagnosis?" I was taken aback, and had no idea how to answer that. My reply was, "Well, if that is the correct diagnosis, yes." To which she said, "Well, do you want an Autism diagnosis or not? I can't go further in the system until I answer that question." Again I tried to explain myself. I was confused. I didn't WANT an Autism diagnosis. But if Jacob had Autism, than yes. But on the other hand, I had read that once you had an official Autism diagnosis getting services paid was harder. So would I be setting myself up by answering one simple question. She wouldn't accept my answer, and so again I ended the call frustrated.

We ended up going to a private practice for Jacob's evaluation. I felt very satisfied with the evaluation and diagnosis, but also felt like we were just kind of left out in the cold after the fact.We weren't really given any direction of what to do with this new diagnosis of Aspergers.

And so for months we continued until one night after a book signing by John Elder Robison (who has Aspergers), we talked with the director of the Children's Hospital basically pleading for help for our son. She made promises to get in contact with us and get things rolling for Jacob. Sure enough she kept those promises, and within two months we were being seen by doctors. So much for the year wait, and so much for not being able to proceed until you answer the "Autism Question".

But indeed we had come through the back door, and so therefore, we were never placed on "the list".

The list it turns out is for intensive at home therapy for hours each day where they would work on self help skills, behavior issues, social issues, sensory stuff, whatever your child was struggling with. They would form a rigid schedule and implement it.

Wow! Could that really happen? How awesome would that be to have someone come in and teach Jacob all those things we try to work on everyday, but fail to make any progress. Putting on socks, cleaning up something he spilled, sitting at the table during meals, talking to friends, blowing his nose, keeping hands to self, not interrupting. The possibilities were endless!

"But don't get excited," Dr. Two told us as she added our name to the list. "It won't happen in a year. It won't happen in three years. Maybe by the time Jacob is in high school."

Did she really just say high school? Surely I heard her incorrectly. Right?

But no, I had heard correctly. The reality is, it may never happen for Jacob. Not only does the list go by when you were added, but by how severe the diagnosis. With Jacob being so high functioning, his time will probably never come up.

And of course I can't help but wonder "What if?" What if so many years ago when I first made that call to the Children's Hospital, I had made an appointment. Where would Jacob be on the list now? What if all the times I had mentioned to Jacob's pediatrician our concerns, he had actually suggested we act on them instead of brushing them aside? Where would Jacob be on the list now? Or what if even at age one when I knew something was different, but no one wanted to listen? Would our time be close?

The list makes me sad. Sad for missed opportunities for our family, and sad for all the other families out there waiting for their time to come. There are countless other families desiring help, yet continuing to do their best with little to no support. Why is it like this? Is this the best we can do for our children?

1 in 88. That's the number of children the CDC estimates have been diagnosed with Autism Spectrum Disorders. More common in boys at a rate of 1 in 54. Some would say it is an epidemic. Others don't like that term. And there's always the question of is the number actually going up, or is it just more recognized now. In my mind, it doesn't matter. The numbers are what they are. And something needs to change!

More often than not when you are reading about Autism, you hear "Early Intervention is Essential". I completely agree. But how can we give that to our kids if parents are left out there alone to figure it out on there own. How can we give early intervention if the best we can do is a seven year waiting list? Sure we could get Jacob that intensive therapy right now and forgo the seven year wait, but would we even have a home to live in? Probably not. It is estimated that the cost for proper treatment is around $70,000 a year. Yes, that is out of pocket, because insurance companies aren't willing to pay up.


The demand is high. There are so many families out there affected by Autism and wanting help at an affordable cost. The good news is that there is a growing awareness of developmental disorders in general. I encourage anyone considering going into the medical or teaching field with a love for children, to consider working with those with Autism.

Here's a few facts found on Autism Speaks website. Some food for thought.

• 1,500,000 families in the Western World are raising a child with Autism. 
• Autism is faster growing than childhood cancer, juvenile diabetes, Down Syndrome, Muscular Dystrophy, and pediatric AIDS combined.
• A 1,000% increase in Autism prevalence occurred in the past 20 years.
• Autism receives less than 5% of the research funding of many less prevalent childhood diseases.
• Prevalence vs. Private Funding
  • Leukemia: Affects 1 in 1,200 / Funding: $277 million
  • Muscular Dystrophy: Affects 1 in 100,000 / Funding: $162 million
  • Pediatric AIDS: Affects 1 in 300 / Funding: $394 million
  • Juvenile Diabetes: Affects 1 in 500 / Funding: $156 million
  • Autism: Affects 1 in 88 / Funding: $79 million

For now we will just continue on our journey. We'll continue helping Jacob navigate this confusing world. We'll continue with the constant reminders of not laying on the floor during dinner, or not walking on tip toe. We'll continue patiently showing the correct way to put on socks, holding back while he struggles. We'll teach him the proper way to talk to friends. We'll insist he not play baseball with his pencil at school. We'll deal with the meltdowns as they occur.  We'll continue to push him forward to try new things and not be scared of what the world offers around him.


Seven years. That's the time it will take for Jacob to be in high school. It took us almost that amount of time to get to a diagnosis. Sure he will continue to go to his social skills classes, and meet with Dr. One and Dr. Two. But without an extra $70,000 laying around, we will wait, and wait, and wait until our turn on the list comes up. And as we wait, we will do our best.

The Good, the Bad, and the could have been Uglier

It's been a smooth ride here lately for us. Ever since Jacob started his anxiety medicine, the roller coaster ride we had gotten used to has leveled off. Don't get me wrong. Although leveled off, we have still been racing forward at top speed as there is never a dull moment with Jacob around. Until his head hits his pillow at the end of the night, we are always in over-drive.

And so this weekend caught me a little by surprise.

First the good.

Jacob had been invited to a birthday party of a fellow baseball teammate who is also in his new class at school. Jacob doesn't get invited to a lot of parties, and when he does, he is super excited to the point it is hard to bring him back down.

Before the invite had even arrived, the mom of the birthday boy had inquired as to how Jacob would do with a roller skating party. Knowing my son, I knew this wasn't his thing. Something new. Something where he would feel completely out of control. So it came as no surprise when I asked Jacob weeks ago about the party, he said "absolutely not!". I left it at that, and told the mom that more than likely Jacob would not be attending.

How surprised was I when a few days later Jacob tells me he is going to the party. Turns out, my husband knew just the right spin to put on the party to make it appealing. Plenty of music, arcades, and snacks were enough to turn his "absolutely not" around. And of course a promise of helping him skate.

I had figured his excitement would waver in the weeks to come, or he would completely change his mind. But Jacob remained steadfast looking forward to his first time ever to skate. Saturday came, the day of the party, and Jacob was more than ready. His dad was taking him, so I anxiously waited for them to return to hear how it had gone.

As the time for the party to end arrived, I  braced myself for the whirlwind that could come storming through the front door more powerful than a tornado. If the party had proven too much for Jacob, the tone was set for the remainder of the day with little hope of recovery.

Yet in he walked with no real fanfare. When I asked about the party, he told me with a huge grin on his face that it had been "super fun" and he couldn't wait to go skating again. "Please, mommy, can we go skating again?" he begged. "Sure! You get to do it next week in gym class," I told him.

Jacob was ecstatic to hear that, and I was relieved knowing that for the next few weeks skating in gym class would be welcomed by him and not a challenge to get him to school in the morning on those days.

He went on to tell me how great of a skater he was. In fact, he was so good he didn't fall once! "Wow!", I thought, "Maybe skating was his thing." He was so good, he even danced while skating he told me.

My husband hadn't entered the house yet, so I went outside to find him and get his version of the party. His was slightly different. Jacob had done awesome and of course he was incredibly proud of him, but when I mentioned about Jacob not falling, my husband just laughed. "Yeah...that didn't happen."

Turns out Jacob fell about 50 times, dashing my plans of him becoming an Olympic speed skater. He told me how Jacob had fallen hard in the middle of the rink and began crying loudly. I could envision the scene, Jacob laid out flat on his back screaming out in pain, while my husband stood over him and people skated around looking over their shoulders wondering if Jacob was indeed hurt.

"So what did you do?" I asked him knowing all too well how Jacob responds in that state. He has to be handled carefully so it doesn't blow up into something much bigger.

"I told him to get up or someone would skate over his fingers!" my husband told me. Sure enough it worked and Jacob got right up. I loved it!

So that was the good. And yes, I couldn't have been more proud of my son for willingly trying something new. A year ago I guarantee he wouldn't have even walked in the building. And if he wants to think of himself as the best skater ever, so be it.


Now for the bad...

Unfortunately Jacob had little time after returning home from the party before he had to get ready for his baseball game.

I almost didn't go to the game as I was supposed to work and wasn't sure if I could find anyone to cover my shift. But I knew the importance of being there. Not only to support Jacob, but being there "just in case". This year baseball had gone fairly smooth for Jacob, but you never know if something could set him off, and I needed to be there "just in case".

I arrived at the game a little late, loaded down with two folding chairs, an umbrella for the sun, a bag full of snacks, drinks in hand, and my other hand grasping the baby's girls fingers slowly guiding her to the field. Before I had even set my stuff on the ground, Jacob was right there invading my personal space. "I'm on the bench!" he happily announced. "hmmm... that's never a good sign," I thought.

Immediately I got a sense of Jacob's mood. He was soaring pretty high, the excitement from the skating party still with him. He was bouncing around in nonstop motion. And he wasn't listening. As I tried to arrange our chairs, and make pleasant conversation with the other moms, Jacob was right there in the middle of it all. " I want popcorn!" "I want something to drink!" "I want candy!" as he wildly dug through my bag of snacks.

"Jacob, you need to be in the dugout with your teammates," I told him. He grabbed a handful of popcorn and went in the dugout. But only for a minute. Sure enough he was right back, demanding more food, grabbing and digging, bugging his sister, in my face. He was just all over the place.

"Jacob, enough!" I told him. "Get in the dugout and you can have a snack after the game."

Back and forth he went, not listening to me, not paying attention to the game going on right in front of him, oblivious to the calls from his dad to find his glove, bat, or helmet. He was definitely not in baseball mode.

And then it was time for him to get on the field. My gut was telling me that things were not going to go well, and I told my friend next to me that I had a feeling I would be taking Jacob home. Jacob slowly sauntered out behind home plate, with catcher's gear from top to bottom. Jacob loves playing catcher. Well...normally.

His demeanor was saying differently. It was as if he was moving in slow motion. First he refused to hunch down, and insisted on standing. Then when his dad got on him to do it correctly, he ever so slowly moved to the correct position.

The first pitch came and Jacob barely flinched. Usually he is a pretty good little catcher, at least giving an effort to catch the ball. But this was as if you couldn't even tell there was a ball headed right towards him.

Another pitch came, and with this one Jacob did move, again ever so slowly, but instead of trying to catch the ball, he splayed himself out flat on his stomach covering home plate. And he just laid there. The umpire looked over at my husband to see what was going on and why this catcher kept holding up the game. My husband yelled at Jacob to get up. I did as well, trying to encourage him.n

"Please, Jacob, please," I thought to myself. "Just get up. Not here. Not now. Please."

He got up, again moving at the pace of a snail. If he got the ball, he barely lobbed it back, the ball only going a few feet. Pitches zoomed right by him. He refused to hold up his glove. At this point it was obvious to everyone that something was up, and the rest of the crowd started yelling words of encouragement as well. But knowing my son like I do, I knew this would just add fuel to the fire. Sure enough, he turned and said, "Come on! Oh my gosh!" toward his dad in the dugout. He was annoyed.

My husband who was sitting in the dugout doorway just a few feet away whispered to me that he wanted me to take Jacob home. I replied that I was already planning on it. So while the inning continued with Jacob's not even half hearted attempts at playing baseball, I packed up all my stuff preparing myself for what could be a major blowout.

We've been down this road many times. Jacob making a scene in public, having a meltdown with everyone staring. It's not fun, for sure. I hate it. I hate that my son feels so out of control. I hate that events that should be fun instantly turn into a fight with an audience to boot.

And so as the inning came to an end, my husband and I knowingly looked at each other as if asking, "Are you ready for this?". We were. But then again, we had no other choice.

The Could Have Been Uglier

It's a whole different story when your three year old is having a fit. People look at you sympathetically as if saying  "Oh, I've been there".  But when your child is seven and looks closer to ten, and he is having a meltdown, people just stare. I don't blame them. But it doesn't make it easier.

We've had ugly scenes in the past. Jacob kicking and screaming as one of us carries him out of whatever public event we happen to be attending. Times where Jacob has just hit us repeatedly. Times where I felt like I could barely hold on to his flailing body, but knowing I had no other choice for his own safety. Times where I want nothing more than the meltdown to end, for people to stop staring. Times where I wish people just knew. This is Aspergers. This  is NOT my son.

My son is loving. He's thoughtful. He's first in line if I suggest cuddling. He's a happy kid. He is not the crazed looking child out of control hitting his mom while screaming at the top of his lungs. That's not my Jacob. That's Aspergers. Not him.

And so as we were stuck back in the middle of the ball complex on field #4, there was no time to wonder how it would play out. As Jacob made his way into the dugout, my husband pulled him aside and kindly told him the news that he would be going home for the remainder of the game. We both reassured him calmly that he was not in trouble. He just needed a break.

Of course we knew it wouldn't be well received, and Jacob instantly was angry and began to yell. But thankfully neither my husband nor I got sucked into it. We both remained calm, and my husband started gently guiding Jacob around the back of the outfield to avoid the crowd of people.

Oh, we still were a scene. I'm sure everyone could hear Jacob's persistent crying and screaming. With no reaction from either of us, we continued our journey toward our van with the baby girl tagging along behind.

"My team needs me!" Jacob kept insisting. "I promise I will listen!" "I don't want to leave!"

I tried reassuring him that even the best major leaguer needs a day to rest. To which he quickly reminded me they at least get to sit in the dugout!

On and on he went. But both my husband and I knew it was the best thing to get him out of there and just somewhere quiet where he could decompress. The day had been too much for him. It wasn't his fault.

With Jacob securely buckled in his seat behind me, I began driving home. It had gone pretty smooth, at least compared to past meltdowns. We've come along way, my husband and I. We've learned that reacting only makes things worse. Getting sucked in to Jacob's anger, only makes things worse. A year ago that scene would have played out much uglier.

Today's score.

Home Team: 1
Aspergers: 0

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."

 

A True Field of Dreams

When you have a child with Aspergers, you really never know what to expect. You learn to never assume typical activities will go smoothly, and to always expect the unexpected. So you over prepare for everything, and hope for the best, but plan for the worst.

In my mind I've been planning for the worst for the past few weeks. We've had a lot of changes in our home with us moving and a new school. So far it's been smooth sailing, but you never know when a hurricane can hit out of no where and completely sink your boat, so you have to be ready.

See Jacob just started Fall baseball. Nothing new, as he has played baseball on a team for two years now. He loves baseball, and knows the game inside and out. So what's the big deal?

Well, it's kid pitch baseball. Up until this time he has played either machine pitch, or coach pitch. But the game would be changing and kids would be pitching now, and Jacob would be one of them.

Jacob's a decent pitcher. For only being in second grade, he does just fine. He's watched enough games over the years to know how it's done. I have pictures of him standing on the mound at the age of two with his one hand behind his back as if he is ready to fire the ball to home plate. He's been preparing for this moment for years. So I really shouldn't have been that worried. But I've learned as with anything, to not have my guard down, because that's when it can all go downhill quickly.

All week long, I couldn't help but remember those first few games of baseball for Jacob just a few years ago. How when the focus was on him, he would just lose it and have a meltdown. I remembered the coaxing to get him on the field at his first tee ball game, and how he got mad and started crying when it was his turn at bat. I remembered the big hits he would get when he started coach pitch and how upset he would be at the fans cheering. So upset he would just keep running past first base right towards the parking lot. I remembered all the times I had to carry him to our car as he cried because the fans were looking at him. I remembered all the games he wanted to sit on the bench because it was just easier.

And of course I couldn't help but wonder, "Would this be one of those moments?".

Would it just be too much? Would he be too nervous? Obviously the focus would be on him. The home fans, the visiting fans, his teammates, the batter, the umpires, his opponents. Everyone would be looking at him. So naturally I was apprehensive.

After the first inning ended, Jacob came up to me and said, "Mommy, I'm going to the bullpen," with the biggest grin on his face. As he warmed up in the grass beside the field, I could feel my nerves getting the better of me.

The inning ended quickly, and it was time for Jacob to hit the mound. This was it. I held my breath, said another silent prayer, and went to the dugout edge prepared to take quick action if needed and to cheer on my son.

As he took a few warm up throws, I was amazed at how grown up he appeared. How graceful and fluid he looked. The visiting team would have no idea looking at my son that he had Aspergers. As the visiting team's parents chatted in the stands, they had no idea the struggles and challenges it took to get to this place. The first time pitching is a great milestone for any child. For Jacob, it is so much more.

Honestly, if someone would have told me two years ago as I carried my son to the car with tears streaming down both our faces after a meltdown at his baseball game that we would be experiencing this moment, I'm not sure I would have believed them. I know that seems cliche, but it is true.

And so as the first batter comes up to the plate, I waited wondering what was going to happen. A strike! Yes...I needed that. Jacob needed that, too. He continued pitching striking out the first batter. Slowly I felt myself begin to relax a little. He was doing it. Alone on the mound with all eyes on him, and he was doing it.

He pitched the entire inning, striking out two batters.

At the end of the inning as the team hustled in to form a huddle, Jacob casually threw the ball up to the dugout roof. Only those that know Jacob knew what he was doing. He was tossing a ball to one of his fans. Just like the pitchers do in the major leagues.

"I Got this, Dad"

I've been absent, I know. I've missed blogging. It's not that I haven't composed blog post after blog post in my head. There has been plenty to write about over the past few months, and it seems I have good intentions. But life has been busy in our household.

It started back in May when we decided to sell our house. Or should I say, I decided it was time to move. I think it came out of left field for my husband. Sure we had talked about it over the years, but for some reason, it just seemed like the right time.

So my wonderful husband spent countless hours getting our house ready to put on the market. How surprised were we when it sold in two weeks time. We were elated, but then the real pressure was on. We had two weeks to find a suitable house to avoid having to move into some kind of temporary housing. It was crunch time.

With Jacob's Aspergers, there was no way I could do that to him. We had to know where we were going. Change is very hard for him. There was no way I could have him leave the security of the only house he had ever known, and move him into an apartment. He would not understand that.

And so the hunt was on. I figured it would be easy. I'm not that picky when it comes to houses. And our house was so small, the main thing was just finding some room to breath. But it proved more challenging than I had imagined.

I couldn't tell you how many houses got nixed with Jacob in mind.

We would drive up to a house and before even stepping out of the car my husband would announce, "Nope! Jacob wouldn't like the driveway. Next!"

He was right. Steep driveways had to be out. We had already battled the balls rolling down the hill fear. We didn't want to go back to that.

Or we would go from room to room loving everything, until my husband would ask, "But where is Jacob going to play baseball?" knowing all too well that Jacob rarely is found around the house without his nerf bat and ball in hand. We stock up for the winter months as he goes through about six bats a year.

Again next house.

Over and over the theme was, "Could this house work for Jacob?" It seemed like it always came back to that question.

He for sure had opinions. He wanted a big yard for playing baseball, a big bedroom, and no more than two steps up to the house. Really? Where did that come from? He claimed our house had too many steps to get in and it made his legs tired. Great, one more thing to add to the list.

Too small of yards, too busy of streets, too old of neighborhoods, too small of bedrooms. It was supposed to be fun looking for a house. We had thought it would be easy. It was losing it's appeal, this whole moving thing. And I was beginning to think we had made the wrong decision.

Where would my son start school in the fall? How could I do this to him? Start him at one school and then move after a few weeks or months once we knew where we would be living. I was feeling awful and full of regret.

Most people reading that wouldn't understand why it would be a big deal. Move into an apartment for a few months. Who cares? But when your child has a hard time with change, you want nothing more than to make it easier for them, not harder.

And so even though my husband and I were both at our rope's end, tired of looking at houses, we kept pushing forward, knowing that it was what we needed to do for our son. Praying for the right house to turn up.

And sure enough it did.

After a late night at Jacob's baseball game, we were telling some of the other parents about our house hunting. Sure enough on the way home, one of them called saying a house in their neighborhood had just went on the market. We called our realtor and the next morning we were the first to see the house. We loved it!

The rooms were big. It was on a cul-de-sac. The yard was decent size. There was plenty of baseball playing room throughout. There were only two steps to get up to the front door. And best of all, Jacob already knew four kids that would be at his new school.

So that's why I have been absent. Packing, packing, packing. Then unpacking, unpacking, unpacking. And now organizing like crazy!

Yet though it all there has been no major hiccups. Jacob started his new school one day, and the following day we moved into our new house. Talk about major change. But somehow, Jacob handled it all like a trooper. Out of all of us, he has probably handled the new changes the best.

On the second day of school, my husband dropped Jacob off. I was worried as in the past he has had a para meet him outside and walk him in and he would go back to the resource room to read or draw before the bell rang. I knew there would be no para there to greet him as we had barely familiarized the new school about Jacob yet. And knowing how drop offs the last two years had gone at the beginning of the year, I was worried Jacob would have a meltdown not wanting his dad to leave. I was pleasantly surprised to hear that as my husband approached the school curb for drop off, Jacob turned to him and said, "I got this, dad."

Yes, Jacob, you do. You've got this. And your mama couldn't be prouder.

Let Me Share this Whole New World with You

As I look around for Jacob, I find him engaging in conversation the bored teenager running the bumper cars at the indoor Family Fun Center. As I get closer, I hear Jacob ask, "So what does this ride do?"

I can tell the teenager is not in the mood to chat, so before he can reply, I say, "Jacob, come on. Let's go."

"No, Mommy, I got this."

I got this? Does he seriously want to know what the bumper cars do?

I listen as the teenage boy describes to Jacob how the ride works. 

"I want to try it," Jacob says calmly. 

Really? What? Again...really? 

"OK," I hear from behind me. It is my husband, and he is quickly getting out our card loaded with credits and ushering Jacob through the gate. My husband has been waiting for moments like this forever. I'm still somewhat in shock and processing the entire thing, as I witness Jacob getting into the bumper car as the teenage boy straps him in. My husband quickly gets in his own car, so there is no time for anyone to change their minds.

Gulp! Am I ready for this? 

My head is flooded with thoughts as the operator begins the ride. Did he strap Jacob in correctly? Does Jacob even know how to operate it? Oh, please don't let Jacob get upset. Is it going to go too fast? What if he gets hit too hard? 

As the cars begin to move, I am thankful it is just Jacob and his dad on the bumper car floor. They are headed right for each other, and I hold my breath as they bump each other for the first time. 

And there it is. Not the flood of tears we would have seen before, but instead a huge grin from ear to ear as Jacob puts his car in reverse preparing for the second hit. 

Three months ago we had wanted to take Jacob here. At the time my husband prepped him by bringing it up online so Jacob could look at pictures, giving him an idea of what to expect. We never made it. Jacob got so upset that day just at the thought of going to the family fun center. The pictures alone had been enough to send him into a shear panic. The promises of treats and unlimited games, made no impact. He was too terrified to go. It didn't matter that we said we would stay home. He cried. He screamed. He kicked. He hit. All at just the thought of going to something that should have been enjoyable. It stuck with him, and for days he kept bringing it up and getting upset. 

So when my husband brought it up the other day wanting to try again, I was hesitant. I knew Jacob had come along way since starting on his anti-anxiety medicine in May. But was he ready for this? 

But maybe the question should really be, am I ready for this?

For seven years my son has been attached to my hip, the timid child not wanting to try new things. Over the years I've watched him be the quiet observer of his peers as they tried "normal" childhood activities. I've seen him spiral out of control, getting upset over the smallest new situation. I've watched him cover his ears from loud unexpected noises more times than I can count. And I've sprinted after him when he flees out of fear. I've prodded him. I have gently pushed. And usually our attempts are met with resistance. 

But I've never seen Jacob take the lead and just decide on his own to try something new. It was exciting to witness and at the same time a little scary for me. I've wanted this moment for so long. And now it is here facing me. And as any mother, when your child ventures out on their own showing their independence, you deeply want to pull back holding on forever to that innocence, but you know you can't as it is the best thing for them.

The doctor had said that by mid July it would be a good indicator of how Jacob was responding to the medicine. In the past month Jacob has gone to numerous major league baseball games. He has rode on a jet ski (with an adult of course!). He's gone swimming in a lake and camping. He has gone to a crowded festival. He's been on a school bus. He's watched fireworks on more than one occasion. All things that before would have brought on huge anxiety and panic, and he did them calmly and willingly.

When Jacob exited the bumper cars, he was beaming. "Mommy, mommy, I want to do it again!" he yelled. "This time with you!" How could I say no to that?  As we waited for the ride to begin, I looked over at my sweet son and smiled. He smiled back from ear to ear. As we bumped into each other, I'm not sure whose grin was bigger. 

It truly is a whole new world for Jacob. So many new things to experience. And I can't wait to show it all to him.

"A whole new world
Don't you dare close your eyes
A hundred thousand things to see
Hold your breath - it gets better
I'm like a shooting star
I've come so far
I can't go back to where I used to be...

Let me share this whole new world with you"

Just thinking about all the things that Jacob may experience brings tears to my eyes. Many things that I wasn't sure he would ever be able to do. If someone would have told me even three months ago that my son would be riding on the bumper cars, I wouldn't have believed them. He truly has 'come so far'.

Later that night as we walked out to our van to head home, Jacob announced to my husband and me, "Next time I want to ride the go-carts!"

What!!!!