The Morning Reminder List

It started with just a comment from Jacob's teacher back in September. While picking him up, I asked how his day had gone, and she mentioned that he had been playing a lot of baseball with his pencil during class when he should have been doing his work. She asked if I could talk with Jacob about it, and I promised I would.

So for the next week, I hit it hard. On our way to school each morning, we discussed the rule of no baseball playing at school, and when and where it would be appropriate. There were promises of treats and rewards, and Jacob did great. Within a week it seemed he had it down and baseball playing was done at school.

But I continued with my morning reminder every day, right as we were pulling into the school parking lot.

And then I picked him up from school again.

"Well, we kind of had a problem with Jacob climbing the bathroom stalls today," his teacher told me.

I nodded as she told me the details about what had happened earlier, and knew I would be adding that to my baseball pencil reminder each morning. Who did my son think he was, Spider Man?

I wasn't shocked by the climbing of the stalls. It had happened the year before at his old school, and I should have known to have talked with Jacob about it before he began his new school. The thing with Jacob is, he can't transfer one thing to the next. Just because it had been a rule at his old school to not climb the bathroom stalls, he wouldn't put it together that his new school would have the same rule. No one had told him, so it was fair game.

So as we pulled in the next day, I began our little talk while driving on the street before the parking lot, making sure we had plenty of time to cover both the pencil baseball and the bathroom stall climbing.

Gradually in the last two months, more and more rules have been added to our morning reminder list.

Let's see....

No hitting friends, no spitting, no falling out of your chair...

The list was slowly getting longer week by week.

And then I got the phone call from Jacob's principal. It's never a good thing when the principal calls. Apparently Jacob had been "tooting" on some of his friends or just "tooting" in general to get a laugh. Yes, my son's developmental age is a little behind. Passing gas is hysterical to him right now. So that was an interesting conversation with the principal. Jacob got to spend the better part of the day in the principal's office doing his school work. Thankfully she is an incredible woman and very tuned in to Jacob and wanting to help him at all costs. She knew that a day of sitting and just doing work would be an impossible task for Jacob, so she would set a timer for 15 minute increments and if he did his work he could spend a few minutes with her looking at a book or talking. At one point she had him go an entire 30 minutes solid of doing work, and if he could do it they would sing a song together. And Jacob did it! I still laugh when I think of Jacob and his principal in her office singing "Forget You" by Cee Lo Green.

And so the list was getting longer, and our morning conversation was now starting as we turned into the subdivision of the school.

The next week added another. No showing private parts. EVER!

Yes, my son thought it would be funny to shake his naked bottom at a boy in the bathroom. Really Jacob! What were you thinking? (Again, why had I not gone over that this was a rule at his new school as well?)

When I asked him about it, he told me he was mad at the other student because they were laughing at him for something he had done. So we went over what he could have done instead and that showing your privates will only get you in trouble EVERY time! There was nothing funny about it.

Again, we added it to the morning list.

For awhile, the morning list stayed the same with no new additions. That is until last week.

"How was Jacob's day?" I asked his teacher.

"Great! He had a great day! But we did have to have a talk about him singing songs with the word sexy in them, and at lunch not pulling the outsides off his corndogs and calling them weiners."

UGH!!!!

So again, we added them to the list and had a lengthy discussion. The funny thing is, Jacob really has no idea what he is saying. He doesn't even say the word correctly. He says "EX-SEXY" instead of sexy. For the past month he has been walking around the house singing, "Heyyyyyyy EX-SEXY lady...". Oh yes, we are doing it "Gangdum Style" at our house.

And if it's not that song, he's singing, "I'm EX-SEXY and I know it".

So Jacob came up with alternative lyrics. He is now singing "I'm happy and I know it" and "Heyyyyyyy Silly Lady...". Both much better choices for a seven year old and school appropriate.

I probably should have squashed it earlier, but I figured it would be short lived like every other pop song, and since Jacob didn't know the meaning of the word, I figured it was just best to not draw attention to it. Now he is quick to point out any time anyone says the word "sexy" although he still doesn't know the definition.

As for the corndogs...he heard a friend of ours refer to hotdogs as "weiners" and thought it was funny. Again, Jacob just has no filter as to what and where things are appropriate. But even funnier is he thought it was in reference to weiner dogs!

And so my list for Jacob keeps growing and growing. We now start our discussion as we round the corner from our house heading towards school. We just finished the first quarter of the school year with three more quarters to go. Pretty soon we will be circling the block a few times in the morning.

I'm thinking by May we will be leaving an hour early and taking a drive on the highway to get the entire list discussed.

"Mommy, What can I do for you?"

Yesterday I was sick. I mean, awful stomach issues sick. Actually I think it was a bout of food poisoning that I got from my favorite restaurant. A much needed mommy night out alone with a friend, lots of chips and salsa, two margaritas, and a few hours later I felt like I was dying. Needless to say it was a long night and I am not in a hurry to return to my used to be favorite eating establishment.

So yesterday morning, my husband lovingly took the day off from work knowing that I wasn't up to par. He let me sleep in, closed the door, and just let me spend the majority of the day in bed. A rarity for me, which just confirmed my suspicions that I am missing nothing from daytime television.

I wasn't there to send Jacob off to school. Nor was I there to pick him up. In fact, I didn't even see him until much later last night, close to 7:00 pm. My husband after picking him up from school took him and the baby girl to one of Jacob's favorite places for the afternoon, the farm. (Well, as much of a farm as you can have in a metropolitan area!) The day wasn't over with the farm, and they ended up going out for dinner, leaving me to a quiet house and no responsibilities.

I figured Jacob was wondering about me.

So I wasn't surprised when I heard the house door opening and the familiar sound of what I knew were Jacob's footsteps. He walked into my darkened room as if on a mission. I could tell he was in a hurry, but not with the normal wild abandonment, instead with careful control over his body as if not to disrupt anything. Immediately he walked to my bedside.

"Mommy, are you ok?" he asked tentatively.

"Yes, Jacob. I'm ok," I answered.

"Oh mommy, I feel so bad for you," Jacob said. "What can I do for you?"

Jacob's eyes said it all. He looked at me with such deep empathy, as if saying, "I've been there. I know how bad you must feel".  It was as if the roles had been reversed with him wanting to care for me.

It was such a quick moment, but I can honestly say it was one of the times I felt the most connected to my son in his seven years of life. With those few words I knew how very much he wanted to take my pain away. With the look in his eyes, I knew how very much he loved and cared for me. It wasn't an automated learned response, it was genuine concern and love. It was empathy.

How I wanted to keep that memory forever. How I wanted to say "See! Look at my son! Right here, right now!" to all those people who say those with Aspergers can't possess empathy.

But who is it that lacks empathy?

Is it truly those on the spectrum that lack in empathy?

Or is it the rest of the world who can't understand?

When Jacob is overwhelmed with the world around him, is it empathy when you dismiss his feelings because it is not overwhelming to you?  Or when Jacob is anxious about a new situation, is it empathy to brush his concern to the side and tell him to "Get over it"? Or if Jacob invades your personal space, is it empathy to recoil and think to yourself, "I wish this kid would back away."?

Better yet, when I am out with my son and he is having a moment, is it empathy when you stare and look at us disapprovingly? Or what about when he acts out aggressively, is it empathy when you chalk it up to bad parenting, rather than seeing it for what it actually is? Or when after a bad day I need to vent, is it empathy when you downplay the struggles associated with having a child with Aspergers? Or is it empathy to share and gossip with others discussing my son as if he is the weather, rather than the sweet boy he is?

So tell me, how can we as society say those with Aspergers lack in empathy, when we are not empathetic to them?

Jacob is the most accepting, non-judgmental child you will ever meet. It's not that he doesn't notice other's differences. He has Aspergers. Remember? He doesn't miss a detail! No he sees it all. The difference? He just doesn't care. Jacob wants to and will be friends with anyone who accepts him.

So maybe the lesson needs to come from him as the teacher. I'm sure Jacob has a social story or two he could share on the subject.

September 26th

Today is a significant day in our lives. 
Today is National Pancake Day!
Mmmm...I do appreciate pancakes and all the warm yumminess that comes with the gooey syrup, but that really isn't what makes today special. Although I don't have dinner planned yet, and pancakes are easy to prepare and well received by both my picky eaters, so breakfast for dinner may be on the menu for tonight.

Today is Street Dancing Day!
Hmm...not sure what the new neighbors would think of this. I guess it would give them a true glimpse of our craziness in our home. But when you have a child on the spectrum, isn't everyday "Street Dancing Day"? Or maybe that's just our house, because more often than not Jacob can be found outside dancing a jig.

Well, here it is the moment you have all been waiting for...

Drum roll please...

Today is Our One Year Anniversary of Jacob's Aspergers Diagnosis!

It's time to celebrate!

Right?

When browsing through other Autism blogs, I read of many people who dread this day. The day their life changed. The day their dreams for their child were shattered and altered forever. A day filled with pain, heartache, and longing for a different reality.

I definitely get that. Trust me, I've had those days. Many. And I could stay in that place of self pity if I so chose. Each day could being heartache if I only fixated on what my son is incapable of doing, or how he measures up to his peers, or if I focused on the challenges our family faces every day.

But I try not to do that.

Jacob was a gift. A very special gift from God.

^" Every good and perfect gift is from above, coming down from the Father of the heavenly lights..." James 1:17 

When Jacob was a baby that verse was on a picture frame in his bedroom. Many a night as I rocked a very hard to console baby, I would read that over and over finding strength in those words. He was perfect. He IS perfect. He is exactly as God intended him to be.

That's the approach I have taken way before there ever was a diagnosis of Aspergers. Sure we knew something was "different" with Jacob. Unique or different don't even begin to describe my son. "Special" doesn't do him justice either. And so I have always thought of him as a "gift".

And with gifts come celebrations!

So today I am celebrating all that my son has achieved in the past year. He moved to a new house with no problems. Every morning he walks into his new school with a kiss, a wave, and a smile on his face, instead of clinging to my leg and hitting me in the back like last year. He is no longer scared of fireworks, balls rolling down hills, dogs, thunderstorms, cars going too fast, and I'm sure there are more things I could add here. He's learned to roller skate and ride a scooter. He's stepped up to a baseball mound on more than one occasion striking out the batter with no thought of the crowd cheering around him.

Last night when I returned home, Jacob met me at the door. He couldn't wait to show me that he had learned to swing on the playset in our backyard all on his own. So at 8:00 with his jammies on and the moon shining bright, I watched my son in the backyard pumping his long lean legs as fast as he could in hopes of reaching the top of the monkey bars. If I could have bottled that moment forever, I would have. The pure joy on his face. Pride. Pleasure. Innocence. Carefree. Happiness. Independence.

That smile on his face is what I celebrate today. How far he has come from those days of shrinking back in fear of just seeing a swing in the distance. From the days of standing at our window crying with true fear as the school kids were swinging away on the playground. Did I ever think we would get here? Here today, where my son willingly and with excitement can't wait to swing on his own? A small moment that to most parents would hold little a memory, but to me is a huge milestone worthy of celebration.

So I celebrate hope. I celebrate those small milestones that are insignificant to many. I celebrate all the successes and also the failures, as they have gotten us to this point as well. I celebrate the connection I have with Jacob. I celebrate my beautiful boy.

And so tonight if you happen to drive by our house and see us dancing away in the street, just know that we are celebrating our "gift", Jacob. And be sure to stop for a stack of pancakes.

"Mommy, I don't care! I just want them to be my friends!"

Last night was a rough one at our house. I knew it was coming the minute I picked Jacob up from school.

"Mommy, Guess who is coming over after school?" Jacob asked.

"Hmm...I'm not sure. I didn't know anyone was coming over," I replied trying not to encourage the whole thing as I knew where it was going.

Jacob went on to tell me that one of the neighbor boys was coming over after school. He said he had asked him at recess, and the neighbor boy said he would be over. So of course Jacob was anxious to get home to wait for his friend.

The second we pulled in the driveway Jacob was wondering why his friend wasn't at our house yet. I've tried explaining to Jacob that sometimes people will say "yes" to something just because they don't want to hurt someones feelings. But he doesn't get that. He always takes people's word for exactly what they say.

I had a feeling the neighbor boy had done just that and had no intention of coming over. I'm guessing he was just tired of Jacob's relentless asking and just gave in and said, "yes".

I convinced Jacob to wait a few minutes and then he could go check on his friend. Sure enough, Jacob came home saying that his friend was not home and his sister had said to check back in an hour. So the next hour was quiet, but as soon as the hour was up, Jacob was sprinting out the door.

This time the neighbor boy was already outside playing with the other neighbor boy. Jacob ran right up to join them. As I stood on our porch watching, I could tell by the other boys' body language they were not welcoming Jacob to play. But body language is lost to Jacob and he continued to push forward. There was no playing by the boys. Instead I could tell they were deep in conversation about something. I'm guessing they were trying to dismiss Jacob with little luck.

I sat down to watch how this would all play out, and it wasn't long before I heard the boy who had promised to come over say to Jacob, "Wow! Did you just hear that? That was my mom saying it was time to come in and go to bed!"

*sigh*

It was 5:45.

But Jacob still didn't pick up that these boys were trying to ditch him. My husband who was also outside at this time walked by and helped get a game of kickball started. By this time there were 4 boys including Jacob. I am thankful that Jacob loves playing sports to at least help bridge that gap a little with his peers.

I settled in on the porch, relaxing slightly knowing that if they began to play something they wouldn't be as quick to get rid of Jacob. But as I listened I heard a lot of "Jacob, no!" or "Jacob stop!" Jacob knows the rules of kickball from playing everyday at recess, but wasn't getting all the cul-de-sac rules that I'm sure have been in place for years.

As I observed a little closer, I realized that the teams were 3 on 1 with Jacob being on his own team. I quickly clued my husband in, who again went over to help set things straight.

The boys returned to playing, and I went into the garage to continue with the never ending unpacking. I could hear the boys loud screaming as I worked. But before long, it was completely silent. I stepped out to the sidewalk unable to find any of the boys. I knew immediately that Jacob had gone into one of their houses. Right now he is obsessed with going into the neighbor's houses. The other day while at a garage sale he tried to open someones door and walk right in.

So I sent my husband on the mission to find Jacob. Sure enough he found him in one of their houses. The other boy was holding two baseball bats high above Jacob's reach as Jacob jumped up to get them.

I heard them before I saw them. Jacob who was sobbing loudly in between screams, which in turn made the baby girl cry as well. I'm sure it brought everyone to their windows to see what the commotion was in the street.

Welcome to the neighborhood!

As my husband wrangled Jacob and the baby girl inside, I knew my drill and began locking doors, securing the perimeter, knowing Jacob likes to bolt at a moment's notice.

Once inside I found Jacob beyond upset, and my husband was barely holding it together himself while both kids bawled around him.

I began asking Jacob to take deep breaths and did so myself. We had learned about the benefits of this at our last support group meeting. It wasn't long before the entire family was sitting on the couch just breathing together. Surprisingly it did help some, and as Jacob calmed down I began to tell him why he was brought home.

I told him how he was not in trouble at all, and that we brought him home because the neighbor boys were not playing nice tonight.

"But Mommy, I don't care!," he yelled back. "I just want them to be my friends!"

It breaks my heart that my son wants friends so badly he is willing to put up with them being mean just so he isn't alone. He knew they were being mean. Where I thought it was lost on him, he knew. Yet, he didn't care because he wanted so badly to be included.

I've said this before. I do not believe that kids with Aspergers are loners. They very much desire human contact and friendships. It's after getting beaten down so many times they decide it is easier to be alone. And it's my job to make sure that doesn't happen to Jacob.

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