How "Dum" Could I Be?: The Red Dye Bandit Strikes Again

Last night something happened that hasn't in a very long time. We left a restaurant.

Now mind you, every time we go to a restaurant it is an adventure. I am envious when I glance around the room seeing other families where their kids are sitting quietly and everyone is enjoying their dinner, as my son is usually either laying on the floor, bothering the people around us, or bolting for the restroom. Obviously we have to eat out occasionally for my own sanity. My husband and I have just gotten used to our restaurant escapades.

It has to be pretty bad for us to actually leave.

So the plan for last night was this...

• Pick up Jacob from school
• Do 1/2 hour of study time and homework
• Dad gets home from work
• Leave for baby sister's first dance class
• Watch baby sister dance
• Enjoy a nice relaxing meal at a family chain restaurant that happened to be offering kids eat free
• Come home and get ready for bed

But of course every good plan can easily be foiled.

All was going great. Sure, Jacob was a little excited about the dance class, which means he was asking a million questions while I was trying to bring up my confirmation email on my phone to prove that we had indeed signed the baby girl up and paid ahead of time, because they did not have any information on us. So yes, things were slightly crazy as Jacob was interrupting me during my conversation with the gal at the desk all the while little girls in tutus fluttered around us in the much too hot room.

We figured out where we were to be, and headed to the dance studio, searching out the "Butterfly Room". After descending the stairs, we located the Butterfly Room for three year olds. As we opened the door, we were greeted by about twenty adults and the same number of littles smooshed into a room the size of a closet.

Ahh...the plan was beginning to unravel.

This teeny tiny closet was the waiting or viewing room. All the little girls shuffled into the dance studio room while the adults remained in the itty bitty space. I knew this room would be too much for Jacob, and I suggested to my husband that they go run a few errands.

He obliged, and for the next forty minutes I took turns with the other parents in the un-airconditioned closet, trying to spy through the small mirrored window to get a peek of the baby girl. If you looked sideways you could almost see her twirling in her pink tutu skirt.

Just on time, Jacob returned, and in typical Jacob fanfare, he somehow made his way politely yet in a manner no one would question, to the little window. After taking a peek, he announced, "They are done!" and opened the door despite my objection.

But all was ok, as the instructor was at the door dismissing the little girls and handing each a dum dum sucker from an overflowing basket. As the instructor paraded around the room with her basket of goodies, she made her way over to the baby girl who quietly accepted the sucker from her hand.

And then there came Jacob, "I want a sucker!" and instead of waiting grabbed one from the basket.

Before I could protest his rudeness, it was already in his mouth and the instructor had moved on. I decided to let it go, not wanting to start a scene and instead moved on to engaging the baby girl trying to get every detail about her first dance class.

We made our way to the van, where my husband was waiting, and began the short probably half mile ride to the restaurant. It was 7:30 and we were all starving at this point.

Once parked, Jacob bounded out of the van, and began dancing on the sidewalk showing us the new moves he had learned at school that day during a movement break. He was talking fast and very excited, and it should have all been a sign or a clue, but I didn't catch it.

At the door I told Jacob before entering that he needed to stop dancing and he assured me he would.

Once in the restaurant, it was as if everyone else was standing still. Instantly Jacob was everywhere! Pacing, talking, moving, running...and we hadn't even been seated yet. The hostess brought us to our table and while we sat, I noticed Jacob was over trying to talk to an employee and pointing to the TV. Yes, that's my son. He won't hesitate to take it upon himself to solve a problem. He wanted to watch the baseball game and it wasn't on. Who cares if we just got there and the TVs had on the football game, Jacob wanted baseball!

He made his way back over to us, and instead of sitting he is standing and talking in the aisle, pacing and moving.

"Jacob, calm down." "Jacob, relax." "Jacob, sit down please."

Over and over my husband and I repeated these words trying to get him to sit. When he did finally sit beside me, I placed my hand on his back. His heart was racing! I began to rub his back in circles in an attempt to relax him. But no luck.

I gave up, and instead tried to focus on the menu, but it was impossible. Jacob was bouncing. I mean bouncing so high that his bottom was coming about a foot off the seat cushion of our booth. As much as I tried to distract him with his Nintendo DS, or the baseball game now playing above us, he continued to bounce, only stopping to stand and loudly cheer on his team clapping his hands and yelling "Woooo Hoooo!"

I looked to my husband, "What is going on?"

Jacob kept right on bouncing, and in between would stand, pace, sit, bounce, all the while being in all the servers ways. Somehow we ordered drinks, but I couldn't even read the menu.

"Should we just go?" I asked my husband.

"NOOOOOOOoooooo...." came a wail from Jacob.

"YES!"

We hunted down our server, asked what we owed for the drinks we had ordered yet barely even touched, and left.

I admit I was frustrated, hungry, and tired. It was close to 8:00 and we hadn't eaten yet, and my kids should have been heading to bed shortly. My patience was thin, as I responded to Jacob's repeated question of "Why did we have to leave?" My husband was the patient one with Jacob as he reminded me to calm down myself.

Instead we rolled into a sandwich shop, and while my husband and Jacob went inside, I went over everything that Jacob had eaten trying to figure out what caused this spike in hyper behavior. It's always something, yet I came up with nothing.

It wasn't until this morning that it hit me.

Duh!

I quickly got my smartphone, and googled "Dum Dum suckers that have red dye."

Sure enough. There are only 5 dum dum suckers out of the 400 potential flavors that do not have red dye. FIVE! That means even lemon has red dye!

Q13: Which flavors of Dum Dums do not contain red coloring?

Flavors that do not contain red coloring: Blu Raspberr (blue), Sour Apple (green), Cream Soda (no color), Cotton Candy (light blue), and Blueberry (blue).

Holy cow! It was the Root Beer Sucker! How dumb could I be.

For those of you that don't believe that Red Dye #40 can cause such a drastic chance in behavior, I really wish you could have been there to witness it last night. It was undeniable.

Yep, the Red Dye bandit strikes again.

***********************

Want more information about Red Dye #40? Here are some excellent links.

Side Effects (They go way beyond hyperactivity)
A Little History
In The News

Still not convinced? Just Google "Red Dye #40 Side Effects" and the over 20,000 pages may convince you.

The first thing our doctor said to do when Jacob was diagnosed was to eliminate Red Dye #40. Thankfully we were already doing that, and have now been Red Dye free for close to three years. But it isn't easy, as you can see because it is in everything, and every once in a while it slips in without notice.

So I challenge you to read the labels and notice the difference.

"I was Scared of Other Kids?"

"Why would I be scared of other kids?"

"I don't know why, Jacob. You just were," I answered.

The conversation had started earlier in the week on our short ride to school, and here we were again talking about it with only a few blocks left until we arrived at school.

The baby sister was starting preschool this week, so there had been lots of talk about her new school. Since Jacob hadn't actually been with when we toured the school, he had a lot of questions about it.

"But why is she not going to my preschool? Why is she going to a church preschool?"

"Why does she not have specials at her school?"

And "Why does she only have to go two days and I went every day to preschool? It's not fair!"

I didn't have good answers. Or Jacob wasn't liking my answers. So I gave him the truth, or an abbreviated truth in the few blocks time we had.

I told Jacob how he did in fact go to a church preschool, where he did go for only two days just like his sister would be. Somehow despite my son's remarkable memory he had completely forgotten this and only recalled his public school preschool.

Or course he wanted to know why he changed schools. I wasn't sure how to word it. Telling him his social skills were lacking wouldn't mean anything. The fact that he didn't transition well, would go right over his head. That he didn't play but instead walked around the room humming concerned about the Alphabet letters being out of order, would not appear odd to him at all.

So instead I told him that he didn't talk to or play with other kids.

Which was true. He didn't at the time. He talked to adults. But kids? Not really.

Since then, we have had the same conversation each morning on the way to school, because he just can't fathom it. He wants to know why he didn't talk to other kids. I tell him I don't know why, but how wonderful it was to have such a great preschool teacher to help him and teach him how to be a good friend.

He can't remember that time, and I am thankful for that. Those are some heartbreaking memories for me when I picked him up from his first preschool to find him sitting at the table alone instead of at circle time with his peers. To Jacob it seems so foreign that he wouldn't want to play or talk to other kids, where now it is the complete opposite. He won't leave kids alone. (Oh, there will always be social skills for Jacob to master!)

This morning we dropped the baby sister off for her first day of preschool. When we pulled into the parking lot, she said, "Bye mommy, bye daddy", as if we were just going to drop her off at the curb. My confident independent three year old probably would have walked right in on her own had we let her. Of course we walked her in. She sat right down and started playing play-doh as if she had done this many times before. There were no tears. None. Not one by her, or by me.

On the drive home, I asked my husband if he thought it was odd that I hadn't cried. With Jacob I had bawled my eyes out when he started preschool. When he started Kindergarten, I was a mess as I pried his arms from around my legs. Even this year as I walked him down the hall to third grade, my eyes welled up with tears.

"No," my husband told me. "You know that she is ready."

He's right. She is more than ready. And each year those tears I cry for Jacob are because I know that even if he excels academically, he is behind developmentally, socially, emotionally, and mentally. And those tears are tears of joy, for how far he has come.

Where has my Baby Boy Gone?

There are times when it just hits you. You realize in a blink of an eye your child has grown.

My son has grown a lot this summer.

Physically he has grown. Emotionally he has developed and matured. He's conquered new things.

In so many ways I am proud of him. Proud beyond measure. And of course, like every mother, it also makes me sad, yearning for those days when time stood still as I rocked my baby boy staring into his eyes. Eyes I still look at daily, but never is there time to just soak it all in.

It first hit me right after school let out. We were walking into the grocery store, when Jacob reached for my hand. On my right was the baby sister who has become programmed at three to always reach for my hand when in a parking lot. And as we began walking into the store, Jacob reached for my left hand. Maybe it was because I was holding his sister's teeny hand as well, but I realized his hand wasn't that much smaller than my own.

When had this happened? And how had I not noticed?

It made me sad the rest of the day and kept entering my head. My baby boy was growing up whether I liked it or not. I made a mental vow that day to notice and appreciate every time my son held on to my hand. Because lets face it, someday he simply won't need to, and at some point he may not want to.

Then last month, Jacob turned eight. Eight! How is that possible?

"He's the size of an average 12 year old boy," his pediatrician told me at his well visit.

Yes, it was confirmed. Jacob was indeed growing.

And I couldn't begin to tell you how many people have told me this summer, "Jacob, has grown taller since the last time I saw him!"

But beyond the physical stuff, he has grown in so many other ways. Is it safe to say that *gasp* he has possibly matured some? (or am I jinxing myself by saying that?)

Just the other day, the neighbor boys were outside playing baseball in the cul-de-sac. One of the boys got upset about a play, and left the game angry and crying. The boy was sulking in the garage, and Jacob slowly approached him. As I sat to the side I listened...

"Hey buddy. That was my fault out there. I really like playing baseball with you. I really want you to come back and play on my team. Let's go work it out..."

Here was my son, the one prone to his own meltdowns, the one who has cried over many a play in baseball, the one who has quit numerous games over the years, here he was calmly talking to this boy, reassuring him, helping him through his own anger.

Before long, Jacob and the other boy joined the others. They sat under the tree where they quietly and quickly agreed on the rules to make sure the same thing didn't happen again, and before long were playing baseball again.

It was awesome to watch.

There have been lots of surprises like that this summer.

Jacob went to baseball camp. He went to summer school and learned to swim, where last summer he wouldn't even go underwater. He's watched fireworks. He's learned patience with his baby sister, and without tattling can glance my way and give me a telling look.

Tonight as I went up to check on my baby boy before going to bed, I knelt by his bed and just stared at him as I had done night after night when he was a baby. I took it all in. How his feet hung over the edge of his bed. His thick hair matted to his forehead. His tanned skin wrapped in the bed sheet. This boy who used to fit in my arms, who nestled on my lap to watch Barney, whose tiny hand I could cup with my own was growing.

And as I knelt there by his bed, on his radio came this song.

"I belong with you, you belong with me, you're my sweetheart. I belong with you, you belong with me, you're my sweetheart..."

I had never heard it before. My music library these days involves old songs from the 90s and whatever Jacob tells me is "cool". But at this moment, this song was perfect.

I knelt there and silently sobbed. Tears of sadness for years that go so quickly. Tears for all the hard times and the days I had wished away because Autism had gotten the better of me. Tears of happiness for how far my son has come and for the greatness I know he will bring. Tears of unconditional love a mother has for her child.

Tears for the boy he is, and for the man he will become, and for my baby he will always be.

Put Me in Coach, I'm Ready to Play

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I wanted that moment.

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

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

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

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

I had gotten my moment.

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

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

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

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

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

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

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

I kissed him and walked to the door.

"Mommy?"

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

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

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

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

"They Should Have Cheered"



Jacob's Drawing of Jackie Robinson 

 

"I just don't get it, Mom."

"Some people may find it offensive, Jacob," I replied.

"But his face is black, and I am supposed to look like him," he insisted.

"No, Jacob, it could be taken as offensive," I repeated. "It's not a good idea to paint your face black."

"What's offensive?" Jacob asked.

Which began an extensive conversation. Much more than he probably bargained for as I went on to explain how years ago people were cruel and mean to people just because of the color of their skin.

Jacob was preparing for his first book report that he would present to the class. Originally he had drawn "Henry Ford" out of the hat, but took it upon himself to tell his teacher that he really didn't care about Ol' Henry. She graciously let Jacob pick from the stack of famous names, to which he was thrilled to find "Jackie Robinson" amongst them.

So in the last two weeks as he has been preparing his report, we have had many conversations about Jackie and how baseball has changed over the years.

"Mommy, did you know that Jackie Robinson was the first African American to play major league baseball?" Jacob excitedly asked on the way home from school that first day he had begun his research.

"And mommy, did you know that people 'booed' him when he would get up to bat?"

"I did know that. Isn't that awful?" I said.

"I don't get it," Jacob replied. "I could see if he struck out that they would 'boo' him, but he was one of the best hitters! Why would they 'boo' him?"

I went on to explain to him that people treated African Americans differently during that time, and just how wrong it was to act like that. We talked about how all people should be treated the same, even if they are different. We talked about the people that we knew that were different, and how those differences make them special.

I am thrilled that it is lost on my son. That he can't even begin to imagine a time where people would be cruel to someone just because of the color of their skin. Maybe there is hope that racism, or any kind of 'ism for that matter, is being phased out to the new generations.

And to my seven year old, it doesn't make any sense. He sees people as people. I almost didn't want him to know that such a time existed, as if by talking about it, it would draw attention to differences that he had never acknowledged.

The whole thing is so ironic. Here's this little boy who the world sees as different, yet he sees sameness amongst everyone. A boy who sees every minute detail and notices any small discrepancy, yet sees every person as an equal. A boy who wants more than anything to be accepted, yet accepts the world with no one person better or no one person less.

"I still don't get it," Jacob said again after discussing it for the umpteenth time, "He was the best hitter. They should have cheered."

I'm happy to report that Jacob did great on his book report. He dressed in his favorite team's uniform proudly representing the sport he loves most. His teacher later told me that Jacob volunteered to go first in the class. My son has come so far in just a year.

I wanted to share with you how Jacob ended his report.

"An important life lesson I learned is some people didn't like Jackie Robinson. If someone doesn't like you, don't give up."
 

 Simple yet wise words from a seven year old.

Yes, they should have cheered. I guarantee if Jacob had been present at any of Jackie's games oh so many years ago, he would have cheered. My only hope is that everyone will do the same for my son.

He Yells?

"So is Jacob special needs?"

I was taken aback. I'd never been out and out asked by anyone like that about my son. And I had especially never been asked by a child.

My husband and I were at our church for their parent's night out program that we participate in. It's a coop program, and it was our night to "babysit" instead of having a date night, so there we were with a room full of sixteen kids over the age of seven, with most of them being loud, giggling, screeching, girls.

Having only a three year old little girl, I am obviously not used to being around a room full of girls that age. Immediately I put a craft table into the works to diffuse some of the shrieky high squealing. All was good. My husband was entertaining half of the classroom by acting goofy, all the while helping Jacob create his own Twister game by piecing together colored circles on notebook paper since the mat had been misplaced. I had a table full of girls quietly making their own creation with hearts and rainbows galore. We had the situation under control. And that's when one of the older girls sitting across from me asked me the question.

I didn't know how to answer, I was so caught off guard. I realized as I looked up from my own glittery heart creation that the entire table of girls was staring at me quietly waiting for my answer.

"Well.....why do you ask?" I finally stammered out.

The girl instantly responded by saying, "I don't know. I just figured he was."

The rest of the table continued to stare. I was hesitant to answer. Although the girl inquiring barely knew Jacob and was only around him during this time once a month, many of the other girls knew Jacob much better and were closer to his age.

I mumbled something quietly saying we would talk later, hoping to get her alone at some point. But then I thought about it. Hadn't I always said that I wanted to teach others about Autism? Hadn't I always said that I wanted to educate EVERYONE to create acceptance and understanding? I had to be honest, and it was a great place to start.

By this point all the other girls were back to their stickers and glitter. The older girl was rambling on about how she enjoys "special needs kids" so much. They're so nice, so funny, yada yada.

"He has Aspergers," I said. "Jacob has Aspergers." not caring that she was still talking about her love for "special needs kids".

She heard me and stopped mid sentence and said, "Huh? What's that?"

"Have you ever heard of Autism? It's like that. Jacob has Autism," I replied.

"Oh yeah! I know what Autism is. That's when they are not very smart. So Jacob isn't very smart?"

Wow...this is what a twelve year old thinks of Autism? I figured when I said Autism she would have heard of it. It's a fairly common word nowadays, and an even more common diagnosis anymore. But "not smart"? And could she be any louder? The last thing I want is Jacob hearing his name and walking into the middle of this conversation. He wouldn't take too kindly to someone saying he wasn't smart. I looked over at Jacob taping his colored circles to the floor oblivious to the chaos of kids running circles around him.

"Actually Jacob is very smart," I told her. "Probably smarter than you, smarter than me, smarter than anyone in this room tonight." I wasn't bragging my son up to this girl. Nor was I saying it in a "my son's smarter than you are, na na na na na" way.  I just needed for her to know the truth about Autism. That it has nothing to do with "smarts". I went on to tell her in simple terms about Autism. That Jacob gets easily overwhelmed. That things bother him. That he likes things a certain way. That he gets nervous. That he doesn't always know how to act or what to say.

"Ohhhhhh....so that's why he yells at us! That makes sense!" she replied after soaking in all the information I gave her. Again, could she be any louder?

"He yells?" I asked. But the girl had moved on. She was now stringing bracelets for all the younger girls around her and had a captive audience. She either didn't hear me, or chose not to answer.

He yells.

My son yells and that's what his peers see and think of him.

I guess in my mind I had envisioned those nights where we dropped him and the baby sister off at church and my husband and I went out for a much needed 3 hours of quiet, much differently. I always ask Jacob about his night, and he always has plenty to share. I also make a point to ask the parent in the room about the evening, and always hear there were no problems. Sure more often than not Jacob decides to play a game or read a book versus watching the movie with his peers, but never has there been a mention of yelling.

I've known for a while it is coming. The day when we need to tell Jacob of his diagnosis, beyond what he already thinks. Jacob knows that he has things that bother him. He knows he takes medicine for those bothers. Jacob knows that there is a para in the classroom that usually helps him, but he doesn't realize that they are ONLY there for Jacob. He thinks he just happens to need help the most. Jacob knows that his brain sometimes thinks differently, but he thinks that is only because he is super smart.

I don't want there to be any shame for Jacob regarding his Aspergers diagnosis. Nor do I want him to ever use it as a crutch. And I certainly don't want him to think he is less because of his diagnosis. So I hope when the time comes to officially tell him, he can find his own strength and his own acceptance.

But for now I have to prepare myself because if this girl sees it, then most likely all his peers are starting to see it. Next time I won't be caught off guard.

Because let's be honest. Yes, my son has special needs. And yes, he yells.

Although, I still don't think he could ever yell as loud as a room full of preteen girls.

What Autism Has Taught Me

 

I've learned a lot from my son. I know just about everything you would ever need to know about elephants, and could name more major league baseball players than most moms. And aside from that, I've learned a lot about Autism.

Throw any Autism acronym at me and I could tell you what it stands for. If Autism is old hat to you, you too know the lingo. If you're new to it, you will soon learn what ABA and SPD stand for, plus a laundry list more. I've read all the books. I've heard all the theories on what causes Autism, and shuffled through them throwing most to the side.

But most importantly, I've learned a lot about myself and life in general because of Autism. With today being World Autism Awareness Day, I thought I would share what Autism and my son have taught me.


1. Patience! I learned this one right away. Parenting in general helps teach patience, but parenting a child with Autism tests your patience at a whole new level. Not that I am perfect at it, because I do have my moments. Mornings are particularly hard when we are trying to get out the door and Jacob decides to watch one more baseball video rather than get his shoes on.

2. Not to judge others: I admit, before Jacob was born, I was pretty quick to judge other people. I'm sure I looked at the parents of kids who were acting up wondering why they couldn't control their children. You know how people without kids of their own always think they have all the parenting answers. Now when I see a child having a meltdown or a mother who looks like her patience is being tried, I don't give them a disapproving look. Instead I smile, because I have no idea what struggles they are battling.

3. To stand up for what is best for my son: Typically I am a pretty quiet person. I follow the rules and keep my mouth shut. But I have learned pretty quickly that if I am not speaking up for my son, no one is. I am his advocate. I am his voice. And I will make sure he has what he needs to succeed.

4. Times when I feel the most broken, are actually times when I am my strongest: I have my moments where I just lose it, when I feel like the worst mom ever. There are times when I feel I can barely keep going. But when I look back at those moments after the fact, I realize how defining they were, and how strong I actually was even if I didn't feel that way.

5. Recognize and appreciate the small things: When you are a parent of a child with Autism, you really view each day differently. I don't need anyone telling me "enjoy each moment" or "someday you will miss those days". As a parent of a child with Autism, I very much live IN THE MOMENT. I don't know what the future holds for my son. We live in a very narrow moment enjoying every small detail. Typical behavior that goes unrecognized by parents of neuro-typical kids, can bring a tear to my eye. My son put his socks on without asking for help. He attempted to go to Sunday School with his peers, even if it lasted all of a few minutes. Jacob dried off on his own after a shower. He had a friend over and actually PLAYED with them. He asked about me, about my day. He didn't play baseball in the store. He wiped his own bottom. He actually WANTED to play in the snow and even suggested going down on a sled. He's learned to use a scooter, zip his coat, unwrap a tootsie roll, turn his sweatshirt right side out. You get the idea. Things that to others are automatic and never acknowledged, do not go unseen here. There is joy everyday in our house in the small things, and we take things one day at a time.

6. Savor every moment: This kind of goes with appreciating the small things in life. Every "I love you", every snuggle, every small connection with your child means so much when they come so infrequently. Don't get me wrong, Jacob is a loving child. He'll ask to snuggle or cuddle in bed. He kisses us goodnight as we tuck him in bed. But finding a deep connection with him at times is difficult, at least more difficult than with our 2 year old who daily gives me affirmations of her love.

7. Pay attention to my own social skills and body language: I feel like I am pretty much an expert at social skills. When you are constantly reminding another human being about their actions, you become hyper aware of your own.

8. Sometimes people are cruel, but most times not: When I am meeting someone for the first time, I try to always slip into the conversation that my son has Autism. I do this for a few reasons. The first to spread awareness and just open up that dialog. The more it is out there and people understand, the less hurdles my son will have as he gets older. It is always interesting to me how people respond. Some truly don't know much, especially when I say "Aspergers". And for others it seems that somehow Autism is connected to their life as well. The second reason I tell people is so they understand my son. Looking at Jacob and even talking to Jacob, you wouldn't really suspect that he had Aspergers. More often than not, when I tell people and they have met Jacob, they respond by saying they would have never guessed. It's not that I am telling them as an excuse for any of Jacob's potentially odd or excited behavior, but for understanding. I have found when people know the whys behind Jacob's behavior, they are less likely to be judgmental and pass it off as bad parenting, and instead are accepting. Sure the occasional stranger has been known to be cruel and rude when Jacob is acting up, and be assured that I let them know why! And of course kids always can be hurtful to anyone that is different. But for the most part, people are receptive to Jacob when they have an understanding.

9. Labels don't have to be a bad thing: For many years I was scared of my son being labeled. That fear kept us from getting him diagnosed at an even earlier age. Getting that diagnosis and official "Aspergers" label was the best thing we ever did. It felt like the tables were turned from that moment on, as if we now held the power to control Jacob's future. He was being labeled anyway whether I knew it or not, but by having him diagnosed, it just gave him the right one.

10. Eye contact isn't that important: It really is overrated. I have learned that Jacob actually hears me better when he isn't looking right at me. But I still catch myself on occasion saying "Jacob, look at me" when I want his attention.

11. It's ok to not know why: This one took a while. For the longest time I was obsessed with knowing "why" Jacob had Autism/Aspergers. What caused it? I read all the theories, which most I dismissed. It always went back to guilt and feelings of somehow I caused this or didn't do the right thing to prevent it. I've learned it really doesn't matter what caused Jacob's Autism. Looking at the "why" means looking backwards, and looking backwards isn't going to help Jacob. So I try to focus more on the present and staying positive for the future, and no more self blame.

12. Embrace my child for who he is, not for what I thought or dreamed he would be: Every parent has dreams for their child. Many times those dreams come before they are even born. I know mine did. You have visions of what your child will be like and your life with them. No parent's dreams include Autism. And again, this is a hard one for me. My husband and I both struggle with this from time to time.

13. Unconditional love exists: Even in those worst moments when Jacob is lashing out, hitting, screaming, and melting down, I am aware of how much I love my son. Sure those times are frustrating and hurtful, but it's in those moments when I feel my heart crushing inside. When I know I would do anything to take away my child's struggles. It's in those hard moments when I know what true unconditional love is.

14. To find potential sources of sensory overload in every situation: The way I view the world is completely different now that I know what could set Jacob off. When he was little, we would cart him off to carnivals, parades, restaurants, even Walmart, without a clue as to why he would cry and scream. Too loud, too crowded, too bright, too exciting, it can all be too much! It's not that we don't do those things today, we are just more prepared, and make sure Jacob knows what is expected and what will be happening next. Surprises and Autism are not a good combination.

15. Life goes on: Autism is everyday. But so is laundry, and making dinner, and errands, and appointments, and school, and work, and you get the idea. More than anything, Autism is not the end of the world. There is still love. There is still laughter. And there is still life with Autism.