The Boat Award

The other day when I picked Jacob up from school, he was unusually happy. He bounded out the door with a big smile on his face scanning the crowd looking for me. Once he found me, his smile got even bigger, "Mommy! I got an award!" he yelled.

"It's in my backpack," he told me excitedly as he ran up and gave me a hug.

He started telling me all about it. It was a "Boat Award". Hmmm...my interest was peaked. I knew that the day before Jacob's class had made boats out of recycled items.

Let's rewind about a month ago. Jacob's teacher had asked for each student to bring in recycled items such as milk jugs, boxes, cartons, so each child could make a robot. I knew when I first read about it that it would be a challenge for Jacob. But my husband lovingly saved all our recycling for two weeks filling one of those huge black garage size garbage bags, hiked it over his shoulder and carried it up to school on the assigned day. There was by far enough materials for the whole class.

That afternoon when I picked Jacob up from school, I saw each of his classmates walk out one by one carrying their robot creations. Jacob was the last to walk out, hands empty. He looked distraught that day. As we walked home I gently asked about his missing robot. "I didn't make one. I don't want to talk about it."

I left it at that figuring he would fill me in when he was ready. That night his teacher sent out pictures of the class making their robots. Jacob was no where in the pictures. My heart sank as I viewed the other kids proudly smiling posing with their creations. Later Jacob did tell me that he didn't know how to make the robot, so he didn't do it. It didn't surprise me. Open ended projects like that are very difficult for Jacob. It's not that he isn't creative. I have seen him design elaborate make believe zoos with Lincoln Logs and blocks in his bedroom. It's the putting together. The cutting, gluing, and assembling where he falls short. Even if he had a grand robot planned in his mind, he would have no idea how to construct it.

It saddens me to think, did he want to participate? Did he have an idea for a robot in his mind, but was unsure where to begin? Was it his lack of confidence in his cutting and gluing abilities that kept him from contributing? Or maybe he honestly didn't care. Maybe he was content with watching.

And so when a few weeks later another request for recyclables came home, I dismissed the note tossing it in the trash. I made no mention to Jacob about the impending project as I knew it would be met with resistance and a desire to stay home from school that day.

So when Jacob informed me of his "Boat Award", I was delighted.

He couldn't even wait to get home to show me the award. Instead he stopped at the school playground digging through his backpack. As he pulled out his certificate, he was beaming. Sure enough there it was, "Boating Award presented to Jacob for Boat with the least pieces".

Naturally I made a big deal of it telling him how proud I was of him for getting an award and for participating. But the obvious question remained, and I had to ask, "So how many pieces did you use?"

"Just one!," he answered proudly. "I used a straw box!"

I held in my urge to giggle. That is so typical Jacob. Leave it to him to find the easiest solution to the problem and use one piece.

I was more than thrilled he had joined in and was able to share the experience with his classmates, even if he didn't actually construct anything. Throughout the years it has become a trend for Jacob to not participate. I have witnessed it at many class parties where he opts out of the games unsure of the expectations, so he simply watches. Art projects rarely come home, yet I see them displayed in his classroom, so I know his peers are partaking. So I've often wondered, how much is my son missing out on because he is too scared to try something new or unsure of what to do or his role in the activity? How often does he watch his classmates instead of learning to enjoy the experience himself? I don't fault his teachers. I know from our own occurrences, that coaxing Jacob to do something unknown no matter how small is about impossible. He has to do it on his terms.

Later that night when the pictures came through from his teacher, I opened them hesitantly. There was Jacob amongst all his classmates bending over a baby pool filled with water. He was grinning from ear to ear. And there in front of him was his one piece straw box boat floating in the water.  I couldn't have been more proud.

The Waiting Game

The phone call came late Monday afternoon. The phone call we had all been anxiously waiting on. The phone call that every night Jacob inquired about. The phone call we all hoped could help.

And so Monday when I picked Jacob up from school, I waited for the question. Sure enough it came.

"Mommy, when do I get to go see that doctor?"

"Tomorrow," I replied. Jacob answered with a surprised "huh?" and a big smile on his face. He was so used to me saying "soon" or putting him off as much as I could because I simply didn't have the answer. But this time I did, and it surprised us both.

When the phone call came  Monday afternoon to set up Jacob's appointment at the Developmental and Behavioral Sciences Department at the hospital, I really figured it would be weeks before we would be seen. How shocked was I when they asked if we were available the following day. Of course I said yes. Somehow we would make it work. We had all been waiting for this phone call and I wasn't about to drag it out any longer. His appointment would be ninety minutes and with a child psychiatrist who would determine where we go from here.

To say Jacob was excited was an understatement. Never has a child been so willing to see a doctor. In fact, he was so excited that the next day, the day of his appointment, he told his teachers all about it and was counting down the minutes until Spanish was over, knowing I would be picking him up shortly after.

Surprisingly I wasn't that nervous about the appointment. Usually these sort of things make me anxious. My only worry was what if they came back after listening to us and meeting Jacob and said he didn't have Aspergers. What then? A crazy worry, I know, but from years of being told my son is fine, I think it is a worry that still sticks. We had made it this far, I wasn't about to go backwards.

After a short wait in the waiting room, we were greeted by the psychiatrist and two student doctors. Beings it is a children's hospital, they made Jacob feel welcome and secure right from the beginning. You could tell this was old hat to them. We all settled in. The doctor wanted to meet with us separately first to get a feel of the struggles we were having and asked that Jacob play quietly outside the door. That would be a challenge as Jacob never ventures too far from us, especially in a new environment. Jacob opened the door repeatedly, and I knew he wouldn't be able to do it. After explaining to the doctor that Jacob was also diagnosed with separation anxiety, one of the student doctor's joined him so he wasn't alone. I could hear through the door, Jacob filling in this young doctor hopeful on every animal fact he knew. There is nothing Jacob likes better than a captive audience.

The doctor asked us to describe our son. We started from the beginning, going over all the struggles, challenges, and anxieties that we see in Jacob. We also talked about his strengths and how he is an incredible kid. At the end the doctor said that he agreed that the Aspergers diagnosis was spot on. Whew! The words I needed to hear.

He then talked about how the changes by the DSM-V on Autism will only change Jacob's diagnosis to "Autism" instead of "Aspergers" next year once they go into effect. Again a sigh of relief. I was so worried that somehow with the changes Jacob would be phased out and suddenly "normal" and no longer eligible for any kind of services. I do have issues with the changes to be implemented, but that's a whole other post.

Many times as we were telling Jacob's story, the doctor responded with "Wow!" and would glance at the student doctor. I wanted so badly to ask, "What does 'wow' mean?" Is my child odd even amongst children with Aspergers? I know his fear of balls rolling down our street is certainly not your average everyday fear, but is it that exceptionally strange?

We discussed options and what to do next. Of course one option is medicine. Always a scary thought putting your child on a medicine that will alter their personality and has some alarming side effects. But it's a possibility we have to consider. If it is going to help Jacob, it has to be considered. I was happy that the doctor didn't seem to push it and said there was no rush. It was hard to gauge how he felt about medicine anyway. His statistics on the difference it made, didn't seem to make that compelling of an argument that we felt a definite choice one way or the other. We left that decision open for now.

After going over our options the doctor had Jacob join us. It was interesting to me watching him interact with the doctor. The doctor asked him about the things he likes, animals and baseball. A good ice breaker for Jacob making him feel at ease. And then he asked about fireworks at baseball games, which led to other things that Jacob is scared of, mainly the balls rolling down the street. I was proud of Jacob and how he answered the doctor's questions and tried explaining his feelings and fears, something that is not easy for anyone to talk about. 

Our ninety minutes was up. I think each of us could have easily talked an additional ninety minutes. We wrapped things up by deciding that our next step would be to try behavior therapy. Again a waiting game on a different doctor's schedule. Hopefully within the next month we would be able to get in for our first appointment.

In the car on the way home, I told Jacob what would be happening next. Naturally he wasn't happy with waiting and I hated giving him that news.

"Jacob, It's a process," I started to explain.

"What's a process?" he asked.

"Well, there are steps. This was the first step meeting this doctor. Then there will be step two. Then step three..."

"WHAT?  There's a step three!" he groaned.

I get his frustration. He wants his mind clear. He wants to stop feeling afraid. He wants to go to sleep at night without thinking scary thoughts. He wants results now, just like we do. But it is a process. A process with no real conclusion. For now I will let Jacob think it ends with step three. He doesn't need to know that this is a battle he will be fighting his entire life, these challenges associated with Aspergers. There could and will be many more "steps".

So this morning, I waited. Would that same question come up that Jacob has asked over and over for the past month since that initial contact we made with the hospital. But instead of the same old question, Jacob posed a new one.

"Daddy, when do I get to go to Doctor Two?"

Slide at Your Own Risk!

This past weekend was our big zoo-get-away vacation. I probably have enough material just from those two days to write posts for the next month. It was a great weekend, with many highs and as to be expected a few lows.

The hotel we were staying at was nothing fancy. We had looked at nicer hotels in the area, but Tripadvisor pointed us to this one. The selling point, a pool designated for kids with two water slides and no part deeper than three feet. Perfect for my two swimmers.

Both of the kids couldn't wait to get their feet wet, and Saturday morning we headed down to the pool. Again, it wasn't fancy. Clean and just as promised, kid friendly. The baby slide was in the shape of a frog and came out in the one foot area. The "big" slide was just a little taller than I am, with a long slow slope coming out into the three foot area.

When the baby girl saw them, she couldn't wait. " 'Wims, 'wims," she cried. She wanted to "swims". Jacob eagerly jumped in the water as well. He loves the water and splashing around. But I wasn't surprised when he went down the little frog slide instead of the other slide.

"Jacob, go check out the other slide," I told him trying to appear nonchalant to diminish any anticipated anxiety. "It's not over your head."

But it was a no go. My son is not a risk taker. Never has been and probably never will be. In situations like this I always enjoy observing him to see how he will respond.

I could tell by his glances toward the big slide that his interest was peaked and he wanted to go down. Normally he loves slides, and has definitely been on bigger than this one. But he was hesitant. I watched as he assessed this situation. First he walked the steps to the top of the slide. There he would stand until someone caught his eye, and then he would descend the stairs again. He'd go back in the pool for a few minutes, and then again would climb the stairs to the slide top again.

But the baby girl wanted to go down the big slide. She marched over to the stairs and started stepping up with no looking back to see if anyone was following. There is no fear in that one. Time and time again she went down on my husband's lap each time squealing with delight. She loved it! I thought watching his sister would help give Jacob the courage he needed. But still, no slide.

Next, I saw him checking it out from the bottom of the slide. He would stand at the bottom in the pool, then bend down, and stand up again measuring how high the water was on his body. Again, I thought this would seal the deal, but instead he got out of the pool and went down the baby frog slide again.

Over and over he would go down the baby frog slide. I'm guessing by the looks on some of the other parent's faces, they were wondering why this child larger than the slide itself was choosing that one over the much bigger and more fun slide. It didn't phase Jacob. He continued going down the small slide waiting his turn amongst the other toddlers less than half his size.

Still every once in a while he would walk over to the big slide and ascend the stairs. I'm guessing in his mind it was a battle. He knew from watching the other kids that were much younger than him, that the slide was fun and not scary, yet it was a mountain to him, and one he hadn't the courage to climb.

And so back and forth he would go. Every so often he would even get brave enough to actually sit on the slide. Once I even saw him rocking back and forth as he held on to the bars on the side. Oh, how I wished he had accidentally let go, as I knew he would have had a blast. But his momentum was cut short when another dad took his place in line behind Jacob. Instead of going down, Jacob politely got off and let the man have his turn.

My husband and I both tried reasoning with him on the slide. We both knew by his peaked interest that he wanted to go, but just couldn't let himself have that moment of losing control and letting go. But our efforts did little to change his mind.

The next morning, Jacob and his dad went down to the pool area while the baby girl and I caught up on some much needed sleep. They were down there for almost two hours swimming in a pool all to themselves. I figured over the course of those hours, Jacob would build the courage to go down the slide and wouldn't want to leave. When they returned to our room, I asked Jacob if he went down the big slide and he said "yes".

"You did!" I was excited for him.

"Well..., not really," my husband said.

Apparently Jacob climbed half way up from the bottom of the slide and then had my husband pull him down. Hmm...not the mountain climbing image I had in my mind, but I guess a step in the right direction. It's a struggle for my husband who is much more adventurous than me. Jacob takes after me as I am definitely more cautious. The baby girl, now that's another story.

"Well, honey," I said, "Just be happy you have one child with no fear." as the baby girl danced around saying " 'Wims, 'wims! Yea!"

So we have a diagnosis, now what?

I never expected that after Jacob's diagnosis we would have all the answers. Nor did I think he would suddenly be cured of his Aspergers. But I guess I naively thought there would be more direction. Like I had said before, Jacob's diagnosis was not a surprise to us at all. My husband and I were both in a place of acceptance at that time. Not one tear was shed. We had already known for so long, I think we were both ready to go to the next step. But what was that? I guess I had expected we would leave our doctor's office with tons of resources. Places to go for support, therapy, different approaches to try, solutions to problems, diet recommendations. Nope none of that. Just a sheet with a few possible locations to try and some books to check out. The books were a no go. Many I had already read, and the others seemed just to repeat the same old information. It seems like every book out there on Aspergers gives you great info on what it is, signs and symptoms, but very limited ideas on what to do to help your child.

And so for the longest time we have been just getting by, taking each day as it comes, the good with the bad and riding the roller coaster of Aspergers. I write often about the challenges and struggles, but there are many good days as well. There are more times than not where Jacob is just like every other kid running the neighborhood playing with his friends, going to school, playing sports, and just being a kid.

But then night gets here and it's time for bed, and it doesn't matter how good of a day Jacob has had, his fears begin to show. Every night I have the same conversation with my son.

"Mommy, when are we going to see that doctor?" he'll ask me.

"Soon, honey. We are just waiting for them to call," I answer although I really have no idea how soon is "soon".

"But mommy, I really need to talk to that doctor now," Jacob will say and I can see how very sleepy his eyes have become.

"Jacob, you need to go to bed, honey. There's nothing we can do about it now."

"But I need to see that doctor to get these thoughts out of my head, " Jacob tells me.

It doesn't end there. The conversation goes on and on with Jacob repeatedly getting out of bed asking the same questions over and over regarding seeing the doctor. The doctor he is wanting to see is a psychiatrist. Yes, my son is begging me every night to take him to a shrink. And every night it makes me heart ache for my son. Every night I feel helpless playing a waiting game on someone else to get Jacob the help he needs. How bad must it be that a little boy of six wants nothing more than to find someone to clear his mind?

Autism resources are limited and many times there is a long waiting list to get in. Not to mention all the paperwork to be filled out by the parents and school regarding behavior. I know as we filled it out the other night my husband was getting tired of me asking the same questions just worded differently over and over. "Would you consider your child's behavior odd? Always, Often, Sometimes, or Never?" hmm....where is the box for "it depends on the day"?

But it's a process, a lengthy one at that. Fortunately while attending a book signing last month we connected with the Autism Specialist Director at our local hospital and she is helping us put a rush on getting Jacob scheduled to be seen. A rush means hopefully yet this month. I am thankful for that, but it doesn't make our nights any easier as we try to explain to our son why he can't just go see this doctor now.

It seems like over the past few months Jacob's anxiety has grown tremendously. A few times a week he is adding new things that "bother" him. I've tried explaining to him that everyone has things that bother them and things we are afraid of in hopes it would help diminish his own worries. But it hasn't helped. Yesterday it was his sister's new leapfrog computer that was bothering him. He didn't like the look on the yak's face when you pressed the letter "Y".  "Jacob, just don't press 'Y' then." I told him. "I have to, mommy. I can't stop." Looks like that's another toy that may have to casually disappear.

And so each day we patiently wait for a call from scheduling. And each night we spend trying to reassure Jacob that everything is fine. I just hope when they do call they have a few extra hours to spare as Jacob sure has a lot on his mind these days, and with a captive audience I'm sure he will talk for hours.

"You Can't Call Your Local Target and Get an Elephant!"

I'm not a zoo person. In fact, I really don't think I ever went to the zoo as a child. There were none close by and I had no real desire to go. How things change when you have kids.

Jacob's thing is animals. It has been for years. He loves them all and we have an extensive collection of those expensive Schleich animals that run about $7.00 a pop to prove it. But he is particularly fond of safari animals, and he loves his elephants.

So each summer we plan a little zoo trip. We have hit all the zoos in the surrounding states. Being fair skinned and with a huge dislike for heat, I decided to get a jump start and plan our zoo trip a little earlier this year to take in the great Spring weather. After finding a day off from school connected to a weekend, we settled on this coming weekend.

We left it up to Jacob which zoo he wanted to visit. He picked one we hadn't been to since he was three. Surprisingly he doesn't remember it, so it will all be new for him. I welcomed the choice with it being one of the very best zoo's in the country and only a three hour drive. My husband labored over where to stay, and after many hours of searching for the perfect hotel, the plans were in place.



And then came Sunday morning.




"Hey, Jacob," My husband said, "Why don't we look at the zoo online and check out the map to see what animals they have."  Of course he didn't have to ask Jacob twice. He was in his element. As they settled in front of the computer, I quickly jumped in the shower knowing this would keep Jacob entertained for a while.

"Uh, we have a little problem," my husband informed me as I exited the bathroom.

"What's wrong?" thinking something had been ruined or spilled while I had showered for a few precious moments alone.

"The zoo doesn't have elephants." he told me.

"What do you mean, they don't have elephants? How can they not have elephants?" I asked.

Sure enough, the elephant exhibit is closed. Apparently a few years back one of the elephants passed away leaving one lonely elephant behind. So the zoo decided to send the elephant to be with other elephants, and they would create a bigger and better elephant exhibit to open in a few years. But not this year.

My husband and I were both thinking the same thing. "Now what?". We both know that there is no animal talk of any kind in our house without elephants involved. Anything animal related that comes into our house better have an elephant. If not, it is a no go.

Of course when I went to find Jacob he was upset. I tried to calm him and help him process a solution to this "big, big problem." In his mind it was a HUGE problem. And he was not taking it lightly. He was furious. I tried taking the approach of how sad that elephant would be if it was there alone, but for a child that has a hard time empathizing, even when regarding an elephant, he couldn't put himself in its shoes.

I got out a piece of paper so together we could write down our options. "I don't want to go!" Jacob said.

"Ok, so that is one choice," I said as I wrote down a number one with "stay home" behind it.

Apparently Jacob did not understand what it was I was doing and quickly snatched up my list, ran it to the garbage can, and threw it in the trash thinking "stay home" was the only choice. He was even more upset now, and the tears were coming quickly. We had discussed it in length already and I was over it.

Thankfully as Jacob went running to his room on the verge of a meltdown, my husband took over recognizing that Jacob was misunderstanding my intent. I could hear the continued discussion on how to resolve the situation and salvage our weekend plans. My husband patiently gave ideas. We could go to a zoo we have already visited. Nope. Not a choice, Jacob wanted to see a new zoo. We could go to a new zoo, but we would have a long drive or would need to fly. Again, shot down. There was no way Jacob was getting in an airplane. Although I did hear him inquire as to how long of a car ride it would be to California, and did they have hotels there? We could go to the zoo as planned and just be ok with it. Again, a big fat no.

The only plausible solution Jacob could come up with? Call the zoo!

Jacob insisted we call the zoo and demand they get an elephant. Over and over he kept pleading his case. If you know my son you know that persistence is one of his finer qualities. His grandpa says he will make an excellent attorney someday as he is relentless. He can go on and on breaking you down to where you just want the conversation to end. I now know why people confess to crimes they didn't commit as I have often just wanted the unyielding badgering to stop.

Finally, my husband had enough of Jacob's forceful demand for the zoo to get him an elephant. "Jacob, you can't call your local Target and get an elephant!"

I lost it and started to giggle. No matter how much I tried to hold it in, there was no stifling this laugh. If I would have had water in my mouth it would have shot across the room. I looked at my husband and he joined me. What made it so funny was the way he had said it, so serious and as if it was the most perfectly normal thing to say.  And somehow it changed the dynamics of that moment. The laughter cut through all the negativity and anger. Jacob's focus shifted to his breakfast in front of him, and the elephant talk subsided. Later that day, Jacob agreed that we would go ahead with our plans as scheduled.

This morning at breakfast, I tentatively asked if the zoo trip was still going to happen. Jacob replied, "Yes, mom. They do have elephants. They are in the gift shop!"

Looks like we will be buying an elephant after all.

It's Taco Bell, Not the Ritz Charlton!

I realized today we are THAT family. You know the one I'm talking about. The one that draws the attention of everyone in the restaurant. The one where the kids appear out of control despite the parents best efforts. Or maybe the parents seem oblivious to their disorderly children. Or maybe the parents are just plain over it! At some point everyone in the restaurant notices this family. What I ask is for you to see that family in a different light.

That family is my family.

Today was to be a lazy day at our house. When I asked my husband what he wanted to do today, he wanted to go to Taco Bell and try the new Doritos taco. A simple thing and kind of an odd request. So that was the only thing we were wanting to accomplish today. Easy enough.

I felt like the dynamics changed the second we walked into the restaurant. The baby girl was thrilled to find a long booth spanning the entire wall and quickly started crawling on it. At two this isn't that big of a deal. The restaurant was fairly empty and no one was occupying the seats. But the problem began with Jacob thinking he could do it as well. Seeing a 6 year old who is much more the size of a 9 year old crawl around on a booth does appear odd and unruly. My husband and I ordered, rounded up the troops, and found our spot with both kids sitting on the long booth.

For the most part the meal was going well. No one was loud and everyone was staying seated. That is a HUGE problem for Jacob. Dinner time at our house consists of Jacob many times pacing back and forth in the dining room while chewing his food. Particularly when he is talking, he has to walk back and forth. So for him to remain seated, is a challenge. At that moment we probably appeared like every other family in the Taco Bell.

Jacob finished first as he typically does, and usually at this point is when he tries to lay down. If he is in a booth he sprawls out, or sometimes he tries to descend to the floor below to lay. It stems from him eating too much too quick and he needs to rest his tummy. We have discussed this in detail on so many occasions, yet it happens more often than not. So Jacob lays down on the extra large booth, first just a little bit. I tell him to sit up, which he doesn't do. I can tell the woman and her teenage daughter who have now sat on the end of the booth are annoyed by the looks they share and the eye rolling our way. Trust me, I know how it all looks. Yes, my son looks like a brat.

Instead of sitting up, Jacob spreads out completely and with his large size his legs reach to the woman's purse clear on the other end. Again, "Jacob sit up!" I order. Reluctantly he does after kicking her purse a few more times, and I apologize to the woman. I notice the looks exchanged again as they continue eating their tacos.

We are finishing up when Jacob announces his tummy doesn't feel well. This too is our typical restaurant ritual. Jacob says his stomach hurts and one of us runs him to the bathroom. My husband quickly guides Jacob to the restroom, and I see that the woman on the end mouths the word, "Good" as they get up. Really? I'm so sorry we ruined your lunch, lady. But it's Taco Bell not the Ritz Charlton!

The thing is, I know my son can be annoying. I live with him. There are times where I want silence. There are times I want him to just be still. I get it! So I can completely understand people's looks, and of course I would feel awful for being disruptive, but I'm sorry, I had to say something. I was fuming.

I filled up our drinks, grabbed the baby girl, and walked over to their table. I am guessing she was expecting an apology. Sorry lady, I already gave you one, and one apology is enough. Instead I said this, "I just wanted you to know, my son is not a brat. He has Autism. Sitting is a challenge for him."

I could tell she was taken aback by my words. Her reply in a huffy way, "That's fine, but he was kicking my purse."

Ok lady, I get it, but if you think I am saying sorry again after how you reacted you are crazy. Instead I said, "I realize that, but I thought you needed to know WHY he was acting that way." She just stared at me. She had no idea what to say. I walked over to wait for my son and husband to exit the restroom.

The lady and her daughter finished their meals quickly and headed out the door. Jacob and my husband came out right behind them. As we were walking out, Jacob was singing and had a big smile on his face. Right in front of us was the woman getting ready to back out of her parking spot. I hope she saw my son. I mean REALLY saw my son. I hope at that point she was maybe feeling a little bad for her reaction and preconceived ideas about him. I hope she realized that maybe these parents have a lot on their plate, much more than purses being kicked. I hope she felt like a heel. But more than anything, I hope she realizes that things are not always as they appear. There is always much more under the surface. And I hope the next time a little boy kicks her purse she has learned some tolerance, and kindly smiles to the parents and says, "It's ok. Don't worry about it." Because I'm sure those parents could use a little compassion instead of judgment.

Maybe next time she can "Think Outside the Bun".

The Stink Eye

I wanted to slug the guy. I mean really. Who did he think he was in his ripped jeans that he was way too old to be trying to pull off, and his Fedora hat much too small for his large head? And to give ME the stink-eye! Really? And then raising his hands as if to ask "What gives". As if I owe him any explanation.

Today was field trip day, and it was my turn to go. I had picked the hospital trip with lunch at the park. I figured it was a short bus ride, so less of a chance that Jacob could be set off by something. I was right about the bus. Jacob did great. So much progress from that first field trip years ago in preschool where he splayed himself out flat in front of the door refusing to get on the bus. He bounded on no problem, and made no mention about the possibility of the bus being loud, or bumpy, or too fast, or anything else he could come up with. His main concern was finding a friend to sit near him.

And so we arrived at the hospital with little fanfare. Ah...what an easy field trip this was going to be! We filed into the building as quiet as first graders can, while they listened to the directions from the hospital staff. We were to ascend the stairs and enter the room where the Medic Bear would be waiting to greet us and then we would proceed with our pretend "play" hospital.

"I don't want to see Medic Bear, " Jacob told me.

"Jacob, It's really no big deal," I said. "Just walk past him and find a seat."

As we entered the room there was Medic Bear handing out high fives as fast as he could to the passing first graders. Thankfully Jacob breezed on by, and followed his class to find a seat on the floor. Whew, that had a recipe for disaster written all over it. Jacob's never been fond of characters, no matter how friendly they appear. They kind of freak him out with their big eyes and ever present smile.

"Mommy, I want you to sit by me," Jacob said as he glanced around the large conference room noticing the hospital bed at the front for the first time.

"Jacob, I'm going to sit here with the rest of the parents," I replied pointing to the rows of chairs set to the side.

"No, mommy by me on the floor," and he took my hand trying to drag me down next to him and his classmates. I knew he was a little nervous. He had no idea what to expect, and I hadn't either so I was unable to prepare him. From what I knew his classmates would be pretending to be medical staff and patients while the true medical staff explained how things work at the hospital.

"Jacob, I'm going to sit here. You sit on the floor right here close to me, " I tell him. He takes a seat near his classmates and I turn to find only one seat available, between a woman I do not know who is busy messing with her phone and a man with a much too small hat who has been taking in the interaction between the two of us. As I sit down, I notice Jacob's teacher has moved closer to him. I'm guessing she could sense his resistance and elevated anxiety from the uncertainty of what to expect.

Things start smoothly and Jacob finds it funny to see his classmates dressed in hospital attire. He's sitting just like the rest of the class, criss-cross applesauce, and no one would know by looking that there is anything different about my son.

"Now I think we need to give our patient an x-ray," I hear the facilitator say regarding the pretend patient.

Uh oh...

No sooner had I thought that, when Jacob stood and said, "I'm leaving. I don't want to see that," and he hurries toward the door without looking to see if anyone was following. Naturally I followed.

I knew x-rays bothered Jacob a little. They never used to. He used to be fascinated by bones when he was in his dinosaur phase. He wanted every dinosaur skeleton out there so he could have his own museum in our house. In fact, for a while we had a sign on our front door charging admission of 25 cents to view his dinosaur museum. But then one day he wanted them out of his room. And so we packed up all the dinosaur bones, and put them in the attic where they still are today. Bones bothered him suddenly. So I knew when she said x-ray, that Jacob wouldn't want to be near it. He's had a chest x-ray before and did just fine. It's not the procedure, just the actual pictures he has no desire to see.

As we are standing in the hallway, his teacher steps out to check on Jacob and let us know that the x-ray portion was done. We head back in and Jacob sits back down next to his teacher. She quietly gives him a task of writing out good behavior slips for his classmates to distract him. I turn to find my seat, and that's when I see the man that had been sitting beside me giving me a disapproving look  with one eye half closed, a snarl to his lip, and hands raised. He's looking me right in the eye, so I know this look is for me. I don't know him, and I'm not about to explain my son's behavior in a full room.

It's happened plenty of times. At the grocery store, restaurants, play places, it doesn't matter. If Jacob isn't acting appropriately as to how someone else thinks a child his age and size should be acting, they look down their noses at me as if it is my fault. As if my parenting skills are lacking. I guess it makes them feel better about themselves and their perfect children.

I try to brush off Stink Eye's stare beside me, but I am annoyed. I can tell by his "hmmf" sound that he is equally annoyed and thinks he is entitled to have an opinion about my son. I can tell by the way he slowly shifts in his seat and continues his "hmmf" sound that he is wondering why my son is the exception. I want to slug him. I want to yell and scream "Who are you to judge? You have no idea who my son is! You have no idea what struggles we have in our life! You have no idea how proud I am of my son for how he handled that. It could have been so much worse. My son has Aspergers! He didn't ask for it, and neither did I!"

But I say nothing and despite my fuming inside, I turn my attention back to the next group of kids playing out the new scenario. All is fine, until again the facilitator mentions that they need to do another x-ray. Again Jacob heads out the door, and I follow. We wait until the x-ray portion is complete and head back in. Again Stink Eye is looking at me as if demanding an explanation for the disruption. There is no way I am sitting by him again, and find a chair in the back of the room. I hope he realized that slight was for him.

We get through the rest of the presentation with no problems. At the door saying good bye is Medic Bear. I am surprised when Jacob walks right up and gives the big blue bear with the plastered on smile a huge hug before exiting the room.

The hard part was over and we are heading to the park to eat our sack lunches. Jacob did great for the most part. We have come a long way.

As I sit next to my son on the cold tennis court eating my peanut butter and jelly sandwich that was smooshed beyond recognition, I notice Stink Eye approaching the group. In his hands are a McDonald's bag and a large strawberry shake with whipped cream for his child. Didn't the handout specifically say a "sack lunch"? I can't help myself, and I give him the ole stink eye back. "Really?" I want to say. "What makes YOUR kid the exception?"

I say nothing. Instead am silently delighted when the whistle is blown and the full strawberry shake gets thrown in the trash.

A Few Funnies For Today

It seems like some of my last few posts have been pretty serious, so I thought I would lighten the mood and share a few of my favorite funny Jacob moments and memories. I know I write a lot about the struggles and challenges of having a child with Aspergers, but Jacob truly is a wonderful young boy who always makes me smile and laugh each day.

At about age four Jacob really began experiencing fears at night. One night after putting him to bed, he came out concerned wanting to know how the bones were going to get out of his body and if a dog was going to eat them. (Age 4)

One morning when I was pregnant with the baby sister, Jacob and I were waiting for school and talking about when he was a baby. He wanted to know where babies came from, and I told him that before he was born, I prayed to God to send me a baby boy named Jacob. Jacob said to me, "Mommy, you better pick a different Jacob because I don't want to go back in your tummy!" (Age 4)

One night after dinner, my husband asked Jacob if he wanted to run to Target with him. Jacob answered, "Are we going to go on the sidewalk?" He thought they were actually going to RUN to the store. (Age 4)

Jacob had been acting a little naughty for a few days telling me "no" whenever I asked him to do something. I sat him down and told him I didn't want to hear him say "no" or "no way" to me again. Jacob asked me, "But Mommy, is 'No Way, Jose' ok?"  (Age 4)

Jacob asked me, "Mommy, the next time you make lemonade, can you make it without any weeds in it please?" Apparently he didn't like the pulp. (Age 4)

At dinner, Jacob was crying and throwing a fit. We told him that was how babies acted and he replied, "I am not a baby! I am a people!" (Age 4)

Jacob wanted me to play baseball with him and pitch so he could practice hitting. After I threw the first pitch, he said, "Mommy, I think you better warm up a bit first." And sure enough he made me practice my pitching before he would hit again. (Age 5)

Jacob wanted to play a made-up game he called "Do you know them?".  First he asked me, "The baby sister?" "Yes," I replied, "she is my daughter." "Ms. Meagan?" "Yes again," I said, "She was your preschool teacher." "Randy Jackson?" "Ummm....Jacob, I think you have been watching a little too much American Idol." (Age 5)

As we are putting on our coats to leave the eye doctor, Jacob yells, "Kick It!" Guess he's fighting for his right to party and has been listening to my Itunes again. (Age 5)

Jacob comes running downstairs and says to me very excited, "Mommy, mommy! I want to show you the pictures I took of the toilet!" Sure enough he had taken a ton of pictures of our bathroom and even made my husband download them to our computer. (Age 5)

Each morning at school, Jacob is throwing a fit before Kindergarten. After a week of this, I am putting him to bed and ask if tomorrow he can walk in without crying. "Sorry, mommy," he says, "We are going to have to do it the hard way again tomorrow." (Age 5)


Jacob told me that he wished he was nocturnal so we could hang out at night. (Age 6)

At Christmas time, we were driving in the van listening to Christmas music when "I saw Mommy Kissing Santa Claus" came on. Jacob was listening for the first time, and pretty soon yells out, "What! She KICKED him!" Kissed, Jacob, not kicked.  (Age 6)
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Where is God in all This?

Yesterday was Easter. Children everywhere bounced out of bed eagerly waking their groggy parents to check their baskets to see what Peter Cottontail left. While they shoved their mouths full of jelly beans and chocolates, their parents protested trying to convince them to eat their breakfast instead. After a hearty Easter breakfast, they all dressed in their Sunday best and headed to church. Sure there may have been grumbles from their children about how they didn't want to go or church was boring. While others may have quietly assumed their role of attending weekly church services. For many it is just what they do. It's Sunday, you go to church.

As I walked into church yesterday morning, I can't help but want that. Jacob is by my side, with my husband and sick baby girl at home. There was no complaining by Jacob. In fact, he walked in excited that his grandparents, aunts, uncles, and cousins were there to sit next to him. We settled in to our seats early. I know from experience that we must be first to arrive to get Jacob settled. I know that church can be hard for Jacob, a lot of sitting still and being quiet, both things very challenging for him. Strange people, some that say hello and he is unsure who they are or how they know him. Sometimes the music is too loud for him, and sometimes he loves it and just wants to dance. It's not that he doesn't like the music. He knows all the songs by heart and has listened to them faithfully since he was little. And so at church I have learned to expect the unexpected. I never know how Jacob will react. As we sat there in church with my extended family and Jacob's aunt to his right, I talked him through what was going on. He inquired as to the instruments at the front that were warming up. We wondered together where his uncle would be standing in the choir once he entered. We discussed how kicking the chair in front of him was bothersome to his cousin. And then it happened. I could see the look of panic in Jacob's eyes. The band had started to quietly tune their instruments. The church was beginning to fill. And Jacob was becoming aware of it all.

"I need to get out of here," he told me. "I need out now."

He didn't yell it. There was no fit to draw attention to us. But I knew we had to act fast. I could see the panic rising as he was trying to figure out how he would escape this crowded room if needed. It was all too much for him.

We walked out into the lobby area to access the situation. Together we tried finding a solution. We walked in and out, in and out, while Jacob was processing what would be a good place for him and not be too loud or crowded. Thankfully at this point my sister who was working in the nursery stepped out. Although intended for babies and toddlers, she invited Jacob to join her which he readily accepted. The nursery was safe for him. It was comfortable. He knew what to expect as he had been there many times over the last few years.

With a heavy heart I headed back into the church just as the service was beginning. As I looked around at all the families worshipping together, I couldn't help but want that for my family as well. As the service continued my mind was with Jacob. It was hard not to think of my six year old son sitting in the nursery out of fear, while I watched these young kids walk up to the front for the children's message something I know my son would never be able to do. The sermon began with a wonderful message of hope. The pastor asked that we give our crown of thorns to God. To let go of our worries, fears, and struggles. Let me tell you, I have plenty. If you were to ask my husband he could tell you how I constantly worry and am scared of everything.

But at that moment I prayed for God to take away all my son's fears. I prayed for Him to calm Jacob's mind and give him peace from all his worries. And I prayed for Him to give them to me. If anyone had to have them, let it be me.

It's so hard to see your kids struggle or hurt. It's even harder when you are helpless and can't take it away. A fever? Nothing a little motrin can't help. A tummy ache? A little Sprite and snuggle time in bed. Even severe hives like my baby girl had over the weekend. Scary, yes, but we knew what we could do to help alleviate her pain. But how can I take away the thoughts that plague my son? How do I take away the worries and fears that I can't fully understand myself?

I want nothing more than my son to be a carefree little boy who doesn't lay in bed at night and obsess about why balls roll down the street, and what is going to happen to them if someone doesn't stop them. I want my son to be saving his money for a new bike, but instead the $42 in his wallet he is saving to buy a new house for us to live in, one NOT on a hill. I want nothing more than to see him enjoy the pinata at his sister's birthday party instead of standing outside the door to our house ready to bolt in case it "explodes". I want so much to understand why the shape of the letter G in his new computer game bothers him so much he isn't sure if he wants to play it again. I want nothing more than to take him to the doctor that he has begged to see for the past two weeks, but anyone with a child on the spectrum knows it is a lengthy process. I want nothing more than to help my son.

And so many times at night when he is scared and all the thoughts are flooding his six year old head, I tell him to pray, to ask God to help him to not think about those scary things. And he does pray. It breaks my heart when I hear him asking God for help. Where other kids his age are praying for "important" six year old things, mine just wants a clear mind. But then the hard part comes when he asks the difficult questions of why God isn't helping him. Or why he keeps having scary thoughts if he prayed to God. In his innocent mind he views God as magical. It's the only thing he can associate God with. God is a hard concept for any child to understand, and even harder for a child like Jacob who sees things so black and white and is a visual thinker.

You may be thinking I am questioning God, or that my faith is wavering. Where is God in all this? It would be easy for me to turn away from Him. To question Him. To be angry at Him. But I know where God is. He's right here beside me. He's giving me the guidance I need. He's helping me find the words to calm my baby boy at night. He's giving me the patience I need. He's showing me the path Jacob needs. He's right here.

Zip it!

Last week while at a kid's clothing consignment sale, I found a baseball jersey of Jacob's favorite team with one of his favorite players on the back in his size. I quickly snatched it up paying no attention to the price. I knew he would love it and was thrilled that I would be bringing him home something he would be excited about. So when I got home, I told Jacob I had a surprise for him. Excited, he closed his eyes and said, "Ohhhhh, I wonder what it can be!" That's when I knew I should have just washed it and hung it in his  closet. Any type of build up like this usually leads to some kind of disappointment. He opened his eyes and I showed him what I had found. "I already have one," he replied. I could tell he was wavering between disappointment and anger. "But Jacob you don't have one. You have a sweatshirt with his name, but this is a jersey," I said explaining the difference. "It doesn't matter," he told me. "I already have one with his name, and you should have known that!"

I should have known it. But I didn't. I never know for sure how Jacob will react to things. I thought he would love it, but instead I had a disappointed boy right before bedtime. Great. My husband stepped in at this point and told Jacob he was being rude and that he needed to apologize. He went on to explain to Jacob about the importance of accepting a gift graciously, all things we have talked about in detail many times. Jacob did apologize. But the tone was already set. I admit I was disappointed as well. Mainly just because I thought I had found something that would make my son's night, but instead had upset him.

You see, it wasn't Jacob being rude. He was just being honest. He had no idea that saying to someone that you already own something when presented with a gift is not polite. Every parent struggles to teach kids how to be polite, but for kids with Aspergers it is a daily struggle. To the outsider it appears that Jacob is just being rude or blunt, but I know that he is just stating facts. Jacob says what he is thinking with no social filter to decipher if it is impolite. Sometimes it is refreshing, sometimes it is hurtful, and sometimes it is embarrassing. It is a hard thing to teach someone as to when their comments may be welcomed or when they could be received negatively. How do you teach someone that brutal honesty is not a welcomed social trait and is instead a deficit?

Even though I know this about my son, it doesn't make some of his remarks any less hurtful. I vividly remember the day he said to his aunt while in my presence, "I wish you were my mommy." At the time Jacob was only four and undiagnosed. I was eight months big and pregnant, sick with bronchitis, and every bit hormonal. My husband had been in the hospital for an extensive stay while having his spleen removed. (a whole different story that my husband LOVES to share!) It was probably one of our more challenging times in our lives. I was struggling to hold it together and my brother's family had graciously came down to help out. Upon their leaving, Jacob said those words to his aunt. It stung. I know he didn't mean it. Obviously an aunt coming to visit gets to spend a lot of undivided attention to a little boy, and especially during a very difficult time when mommy was dog tired and spending countless hours on the phone.

There have been many times like that, and not only to me or my husband. He is an equal opportunity guy saying just as many "rude" things to friends, family, and strangers. At age two he would yell "Stop looking at me!" to anyone smiling at him. How do you explain that one to the Target cashier as you are trying to quickly pay as he continues to yell it over and over?

I worry about the effect it will have on friendships as he grows. Right now his friends are pretty forgiving, or things he says goes unnoticed. A classic example is every time his grandparents are visiting and Jacob sees one of his neighbor friends outside, he will open our front door and yell out to them, "I can't play! My grandparents are here!" even if these kids aren't inquiring as to if he can come out. Or if one of our neighbor friends happens to come over while we have company, Jacob will simply tell them to leave because he can't play. No greeting. No casual, "Hey it's not a good time." Just nothing short of letting the door kick them you know where. Not exactly a positive trait, I know.

If Jacob sees someone breaking the rules, he is quick to point it out. It doesn't matter if he knows that person or not, and especially if it is another kid. The other morning while walking to school he told his friend to stop riding his scooter on the side of the road. The funny thing is many times the kids will listen. I've tried explaining to Jacob that people do not like to be around someone who is constantly correcting them or telling them what they are doing wrong.

But there is some good to it. It is often said that people with Aspergers are incapable of lying. Some would argue that point and say that lying and Aspergers have nothing to do with each other. Others would say that if they do lie, it is because they are seeing the situation differently, and therefore it is not a true lie, but wishful thinking on their part as to how they would like the event to have taken place. Still others would say that Aspies may be capable of lying, but are reluctant to do so and typically have a general inclination toward honesty.

For the most part Jacob is not a liar. And if he does, he is certainly not good at it! He tattles a lot on other kids, which is not the best trait, but I know that he is generally speaking the truth. He just doesn't have it in him to make something up about someone. If and when he lies, it is usually about himself. Like if we ask him if he washed his hands after using the bathroom he will tell us yes, but when I ask for the mommy hand sniff test, he quickly says he forgot and runs into the bathroom.

I remember when he was little and I was baking cookies. I had told him he could have two. He ate his two but kept insisting on more. I kept my word. Two. Surprisingly that was it, and no fight, and Jacob went on to play. I continued my baking, but it didn't take long for Jacob to return. "Mommy?" "Yes, Jacob." "I ate two more cookies," he told me. Perplexed as I had not seen him eat any I asked when. "Just now. I took them and ran in your bedroom closet and ate them." It made me laugh. The vision of him standing in my closet stuffing his mouth with sugar cookies cracked me up. He easily could have gotten away with it as I had no idea, but he had to tell me. That's my Jacob.

I do remember one morning when Jacob lied and it took me a while to catch on. Every morning our neighbor boy comes over and walks to school with us. Typically the last few moments before we walk out the door are Jacob and him disagreeing on which TV show they should watch. Normally getting Jacob to come up to brush his teeth during this time is nearly impossible as he doesn't want to risk giving up the remote. But on this particular morning, he came up the first time I asked and kindly handed the remote over to his friend saying, "Here you go.Turn it to whatever you want." "Wow," I remember thinking. "My son is growing up. What a kind thing to do." It had totally caught me off guard and our neighbor boy as well. Jacob went in to brush his teeth, and once he returned he said to his friend, "How's that working out for you?" To which our neighbor boy said, "It's not working!" I shuffled both boys quickly out the door and we began our walk to school. It wasn't until after I had left the boys at school that I realized Jacob had given his friend the old remote with no batteries in it that we kept for his baby sister to play with. What a stinker!

So I am grateful that I do not have a lying problem to contend with. My son typically tells the truth whether people like it or not. Sometimes it does sting, sometimes it makes us laugh. More than anything I do hope he learns some discernment. As a child it can be easily brushed aside as the innocence and honesty that goes with adolescence. I hope in time he learns that not every thought that crosses his mind needs to be said. Not every wrong he sees has to be corrected. And if he does feel he has to speak his mind constantly, it can be done tactfully.

"Whoever guards his mouth and his tongue keeps his soul from troubles." Proverbs 21:23

"Even the foolish man, when he keeps quiet, is taken to be wise: when his lips are shut he is credited with good sense." Proverbs 17:28

The other morning Jacob came out of his room after dressing for the day and told me, "Mommy, I didn't want to wear the clothes you laid out." "That's fine, honey," I replied while finishing the breakfast dishes. I heard him bound down the stairs to the living room and I turned to see his favorite player's number on his new jersey. The jersey I had so lovingly found.

Everyday We Shine a Light on Autism

I never know when things are suddenly going to take a new direction. We can be having the best time, when something, no matter how small sets things in motion. Each moment is as fragile as a light bulb and must be handled delicately.

The start to our day was going well. Jacob was beginning his day with only a few reminders to stop watching youtube videos of baseball and to eat his breakfast. Surprisingly he brushed his teeth the first time I asked, and we were heading out the door. It was a beautiful morning with a crisp breeze despite the 90 degree heat expected. As we walked the block to school all of us dressed in blue, we laughed about how Jacob still had toothpaste on his face from hurrying out the door. As we approached the school building, Jacob saw his para who meets him each morning assisting another student, and he looked at me and said, "She didn't see me. I'm going to trick her." He had a big grin on his face as he hurried ahead, I'm guessing to hide by the door. I knew this could be a disaster if it didn't play out how Jacob anticipated. Apparently my location was not where he wanted me. "MOMMY! You ruined it!" he yelled, and then he hit me. At that point his para walked over and said good morning, and Jacob proceeded to hit me again. I tried kissing him on the head goodbye and walking away, but he didn't want me to leave and hit me two more times. With a little assistance from his para, I pried myself from him and started for home. I hate leaving Jacob like this and worry about his day starting out full of anger.

When your child is hitting you in public, it is as if every eye is on you the parent. I know what our situation looks like from the outside observer who is unaware of Jacob's diagnosis. It looks like a bratty kid with a passive mother who has no control over her child. I can feel the eyes of the teachers outside directing traffic. I can sense the parents in the cars dropping off their kids, moving forward ever so slowly to see how this will play out. I notice the students pausing, glancing our way. I am aware of my baby girl witnessing this all. I want more than anything for this moment to be over. But knowing my son, what can I do at that moment? I know from experience that he is hitting because he is frustrated. I know that I have two choices at that time. I can keep my voice calm, express my displeasure, and for the most part ignore the hitting. Or I can react how most parents might by insisting on a punishment, raising my voice, and expressing my parental authority. Honestly, neither is a great approach for Jacob, but I know the second option will send him into a tailspin and that was the last thing I needed as he was heading into the door for school to begin. I also know from experience that Jacob will feel remorseful afterwards.

As I am walking home pushing my baby girl in her little pink car, I think about today, April 2, 2012. World Autism Awareness Day. Our house is glowing blue and each of us are wearing blue clothes today to do our little part in spreading awareness. I know that across the world, people are pausing today and giving thought to Autism, especially in light of the new alarming statistics put out just days ago. It fills my heart and brings tears to my eyes just thinking about all the people with the same thoughts today.

But tomorrow people will put on a red shirt with no thoughts of Autism. Prominent buildings will replace their blue lights. Today's thoughts of Autism will be long forgotten. Yet our reality is that everyday is Autism Awareness Day. Just like every other person affected with Autism or having a child on the spectrum, tomorrow is just like today.

We are speaking. It is time to listen. Please don't forget about us.

As I am typing this my phone rings. I notice on the caller ID that it is my son's school. As I tentatively say hello, I am preparing myself that Jacob has possibly had his first true meltdown at school. But instead of his teacher's voice, it is Jacob. "Hello mommy. I'm sorry I hit you." I know my sweet boy. I know.