Take That Autism!

Sometimes Autism sucks.

I never use that word in everyday life. I would be all over my kids if they said the word "sucks", but no matter what word I put in its place it just didn't work. So let's just say it like it is...

Sometimes Autism sucks.

Monday night was one of those times.

This past Monday was Memorial Day. Jacob had been looking forward to this day all week as it was his best friend's 9th birthday and we were celebrating it at Jacob's favorite place in the world, our local MLB stadium.

Years ago it had been a struggle to get Jacob to go to the baseball stadium because of his fear of fireworks. Despite his love for the game, and his love of the team, he wanted nothing to do with it because of the fireworks at the end of the game. But after many times of forcing him to sit through the game and fireworks at the end, it became a non-event.

So it really wasn't on my radar to be worried about attending the game for our friend's son's birthday. But it should have been.

The party started out just fine with 23 kids and adults enjoying sandwiches and cupcakes in the parking lot prior to the game. The boys were having a great time alternating between playing their own game of baseball and grabbing food. It was about 45 minutes to game time, and we began packing things up and that was when the first "BOOM" sounded.

"What was that?" Jacob asked running over to me. "Did you hear that boom? Was it thunder? Was it a gun?"

Uh oh...

I tried reassuring him that it was nothing, a one time thing in celebration of Memorial Day. A cannon maybe? Some kind of old gun? But nothing to worry about.

Jacob didn't believe me and headed to our van. While his friends were anxiously waiting to leave the parking lot and head into the stadium and the adults cleaned up the mess, Jacob's heart was beginning to race. I could see the look in his eye. He was terrified, and beginning that downward spiral.

I honestly didn't think there would be another cannon blast. Between my husband and I, we convinced Jacob that everything was fine and he should walk into the stadium with his friends.

But for Jacob everything was far from fine. As we walked in he began to panic. "It's ok, Jacob. You're safe," I quietly whispered over and over. He grabbed for my hand and I hoped that just knowing his parents were there would be enough to get him through this. Around us, his friends kept talking about the loud "Boom" and what could have caused it. The more they talked, the more I felt Jacob tense up. It was as if he was walking into a line of fire as we walked into the stadium.

There were people everywhere. As we weaved through the crowd trying to find our section, patriotic music played, flags waved, the field below us was full of military being recognized, and Jacob became more and more tense and clung to my hand.  For whatever reason, I thought we just needed to get to our seats and all would be fine. Jacob would see that nothing more was going to happen and we could all relax and continue with our fun night.

It took some adjusting to get our large group settled. Jacob was in the row below us right next to his best buddy. Why I hadn't thought to have him in the middle is beyond me. Like I said it just wasn't on our radar that we would have any problems. He loved baseball and had been to plenty of games over the years with no issues. His little sister was seated among the girls to my left, and my husband to my right. We had just taken our seats and I remember thinking at that moment how glad I was we were so close to the restrooms and concessions, when Jacob sprung up from his seat with that panicky look in his eye and took of running screaming the entire way.

I yelled to my husband to run after him, turned to my friend to make sure she could watch my daughter, and took off running as well.

The joke on my son's baseball team is how slow Jacob runs. He runs (and walks) on tip toe and often I hold my breath after he hits the ball and is running to first base because he is not exactly what you would call speedy. But somehow, when he is scared, that boy can run!

We caught up to him outside the stadium walls, yet inside the fence. He had paused right  in the middle of the smoking area. My husband ran up to Jacob and held him tight, restraining him for his own safety, because when Jacob runs, he runs, without looking, without thinking, and without any thought to his safety. We tried talking to him calmly. We tried reassuring him that everything was ok. And while we did that he screamed, and cried, and hit, and kicked trying to get away. We assured him we would let him go as soon as we knew he wouldn't run, and he would promise, but the moment we let go, Jacob would attempt to run. Or he would be fine for a moment but quickly the panic would rise again.

This was nothing new for my husband and I. We had done this plenty of times with Jacob, held him close to keep him safe, safe from himself. But it had been a long time, and this meltdown was big.

People all around us were staring. How could they not? A boy screaming and throwing a huge fit, punching and kicking his parents. I'm sure to most people they had no idea they were witnessing Autism at its worst.

We tried reasoning with Jacob even though we both knew it was pointless when he is in that horrible place. I think both my husband and I just weren't sure what to do in that moment. We both knew Jacob's intense love for baseball and his MLB team. We also knew how much his best buddy meant to him and how long he had been waiting for this day. We knew our daughter was sitting inside, so we couldn't just leave. We knew two other friends had rode with us in our van and we had to make sure they had a way home. And we knew once you walked out the stadium fence line, there was no return.

So there we stood among the smokers who continued to smoke their cigarettes yet taking this all in out of the corner of their eyes, with passersby gawking at us, employees of the stadium slowly walking by assessing the situation wondering if they should intervene. Around us "God Bless America" hung in the air coming from the stadium, and every once in a while a cheer as the crowd applauded the Veterans being honored each time making Jacob quickly cover his ears anticipating a loud boom. At some point a 21 gun salute went off, causing Jacob to become frantic looking for an escape. We were unsure what our next move was as we continued  to attempt to calm our son, when above us a man starts yelling from the top of the stadium wall.

At first I couldn't make out what he was saying. Nor did it even register that he was yelling at us. But it soon became clear that he was very intoxicated and indeed his garbled words were meant for us, and I made out a few words. "You shouldn't be hitting your mom...blah...blah...blah..." He just kept yelling. "...disrespectful to the armed forces!"

That was when it all became too much for me. I stepped away from Jacob, towards the man high above me. I felt like everyone around was watching to see how this was going to play out, and I yelled back to him, "My son has Autism! Do you have a problem with that?"

He yelled back that he couldn't hear me, and he quickly disappeared. I have no idea if he really did hear me or even if he would have any idea what I was talking about. But my yelling wasn't just for that drunken man. I needed and wanted everyone who had been witnessing this scene to know what they were seeing. Autism at it's worst.

I turned back to Jacob and my husband. Jacob seemed less tense.In fact, he seemed broken, like he just wanted to fall on the ground and sob yet my husband held him in place. Jacob wanted to go inside. He didn't want to miss the opening line ups, his favorite part.

A young guy smoking behind Jacob said something about "that idiot had been saying stuff in the parking lot, too." Another person said, " You're ok little buddy." It was interesting to me how suddenly the tone had shifted slightly. Those inquisitive curious judgmental faces suddenly seemed much more full of compassion and understanding.

Jacob took a few deep breaths and we walked back into the stadium. I wish I could say we stayed. We were there only for a moment. Patriotic songs were still playing and Jacob said, "They are singing!" The field was lined with Veterans. The fans were cheering. And then this...

"Fire away!"

Jacob sprinted from the stadium again, not glancing back for a second. He was anticipating a cannon blast, and he had to get out of there. He didn't realize they were talking about firing in the first pitch. I reached Jacob first, and put my arms around him tightly as if in a bear hug, keeping him from running anymore. While I held him we slowly walked toward the exit. Jacob was sobbing and saying, "I just want to leave. I just want to go home."

"Ok, honey."

At that point my husband and close friend joined us. We were back in our same spot in the Smoking Section. We were becoming all too familiar with this spot. My husband took over holding Jacob and my friend talked calmly to Jacob. I could tell Jacob was too far gone. He looked exhausted. Suddenly, high above military planes flew over the stadium. We all looked up. Even Jacob with tears streaming down his face. I looked at my friend and realized we needed to end this. She was outside with us, instead of inside the stadium enjoying this moment with her own son on his birthday.

Jacob heard the starting line up begin. I could tell he was torn, wanting desperately to be there, but terrified of more cannon or gun blasts to come. Our new plan was to go to Guest Services hoping they could tell us if the Memorial Day celebration was over and if the rest of the game would be a typical day at the park.

Unfortunately it wasn't going to be. Guest Services checked for us, and the plan was for a cannon blast with every run scored. I looked over at my son sitting there with his new much too small baseball cap given to him by Guest Services upon his head, his little face still wet with tears, and knew we had to leave.

After retrieving his sister, who was also crying now because she didn't want to leave, and his friends coming to say goodbye, we began our walk to the van. Jacob was still panicky at this point. He just wanted out of there fearful that his favorite team would score before we could exit the parking lot.

Once on the highway his mood changed. It usually does. Instead of anger or panic, he became remorseful, apologizing over and over for having to leave despite us reassuring him that no one was upset. He was worried that he had ruined his best buddy's birthday party. He was beat down. Tired. Exhausted. Drained. He was finished. We all were.

I would like to say it ended there.

Once home, Jacob played baseball outside with a neighbor friend for a short while, came inside and got ready for bed, and fell asleep fairly quickly. I was relieved that the evening was over, or so I thought.

As I got ready for bed that night exhausted myself, I thought I heard Jacob in his room above me scurrying around. I paused and listened again. Surely it wasn't him. He had been asleep for hours, and I had just checked on him minutes before and he was sleeping soundly. All was silent, so I finished getting ready for bed.

I turned to get into bed, only to find Jacob nestled in my side already fast asleep. I gently woke him, and he rose to walk to his bed without opening an eye or saying a word. Again I tucked him in bed, and quietly exited his room. But right at the door, I heard him say, "mom..." I went to his bed and found him shaking uncontrollably. "Jacob, are you OK? Are you cold?" I asked placing a hand on his forehead like any good mom would do. For the longest time he didn't answer. Concerned I sat on the end of his bed to make sure he was going to be alright. Again Jacob said, "mom..." "Yes honey," I replied.

"I'm scared, mom," he said, "I'm just so scared."

I laid down beside him and held him for the longest time, as he continued to shake.

He was up most of the night begging to go to sleep yet his fear prohibiting him, and often times demanding to know why God had made him this way, a heartbreaking thing for a parent to hear their child say. Finally at 5:30 he fell asleep.

Yes, Autism, you won that day. Thanks for the reminder that no matter how much we plan, prepare, or think our son has overcome the obstacles you present, you are still there.

There's a saying in the Autism community that I hear often when a child does something that conventionally people would assume a child with Autism could not do. It is "Take that Autism!". As I was feeling defeated and deflated yesterday by Monday's events, I realized something. When we were standing in Guest Services getting ready to leave and Jacob was crying and saying goodbye to his friends, he asked "Can we do this again with all of us here coming back to a game?" Even though he was in the middle of one of the biggest meltdowns he had ever had, so freaked out enough to where I was wondering if we would ever step foot at this stadium again, Jacob already was planning a return trip, just not on Memorial Day.

So "Take that Autism!"

I'll give you Monday, but we have the rest of the summer.

"Mommy, Do I have Autism?"

It was the week before Christmas when Jacob asked the question.

It wasn't how I had envisioned it in my mind countless times before. For whatever reason, I had figured it would be both my husband and I sitting Jacob down, giving him the details of his diagnosis. We would explain it the best we knew how, fielding all his questions and giving him all the right answers. Deep down, I knew it was time. Yet we always seemed busy, or the time was never quite right, or was it really time?

So I hadn't really expected it as we sat in our eat in kitchen that cold December night, while my husband was working late again, the kids ate their corndogs, and I went over the long list of things yet to be done to prepare for Christmas.

"Mommy, do I have Aut-ism?" Jacob asked in between bites.

The question jarred me out of my thoughts of shopping lists, Christmas cards, and treats to be baked. Had I heard him correctly? Surely I hadn't.

"What did you say, honey?" I asked.

"Do I have Autism?"

The word sounded foreign coming from his mouth, as if he was saying it oh so carefully so as not to mispronounce it. A million thoughts immediately scattered through my brain. Where had this come from? What would I say? Would I find the right words? This isn't how I had planned it. Why couldn't my husband have been here? Oh, please don't let me screw this up. You only get one chance to tell your child for the first time that they have Autism.

"Well...why do you ask?" I asked him. Hadn't I heard once that answering a question with a question was a good practice?

"Because T at school said he is pretty sure that I do. So do I?"

My first reaction was, "who was this T kid and why was he telling my son this?" And then I remembered, T was the boy in Jacob's class who also has Autism and had shared that information with his peers early on in the year. Somewhere along the line someone must have shared with him Jacob's diagnosis.

"Would it bother you if you had Autism?" I asked, again using my answer a question with a question technique. I needed to know what exactly he knew and thought about all this already.

"No", Jacob answered short and sweet.

"Well, yes you do have Autism," I told him.

I went on to tell him just briefly how his brain thinks differently, how things bother him that don't bother other people. But my words were lost as he and his sister were bent over his tablet playing some cupcake creating game.

There was so much I could have shared. Social struggles, obsessive thoughts, behavior problems, sensory issues, anxiety, meltdowns, frustrations, ADHD, etc, etc. But really is that what Autism is? Sure those are the clinical "Signs and Symptoms" of Autism, how Autism presents itself to the world.

It just seemed to me if I did that, it would be like telling him his brain was wrong. It's not wrong, Just different. I want him to grow to be a confident young man, to feel empowered by his diagnosis, and not use it as a crutch or to feel shame.

I want him to know that with his Autism comes much love. Such a deep love that if I could take away all those struggles, I would. I want him to know that he has Autism, but that is not who he is, there is so much more. I want him to know that it is a big deal, yet in the same way, it isn't a big deal at all. Nothing changes. He is the same sweet boy I have and always will love unconditionally.

Maybe that was all he had needed at that moment. I knew that bits and pieces would come out here and there and we would give Jacob the valuable information about his diagnosis as he needed and wanted it.

It wasn't as if Jacob knew nothing up to this point. We had talked about things "bothering him" or making him nervous. He knew he took medicine to help him with things that made him anxious. He had paras at school that helped him, and he knew that other kids did not, and he always seemed ok with that.

He knew that mom and dad went to meetings and that the other parents there also had kids with things that bothered them. He had asked why he went to doctor appointments when he wasn't truly sick, when other kids did not. And at those doctor appointments we openly talked about his diagnosis with the doctor while Jacob was in the room.

We hadn't kept it hidden. We just had never given a formal name to any of it.

 

 

So the topic of Autism had been left at that one single conversation in December. Until this morning on the way to school.

We had just rounded the corner to school and were in the back of the long drop off line. Jacob had been talking about "T" again as he had for the past few days because he was wanting a play date with him. He had given T his number and was inquiring as to why he hadn't called yet.

"T has Autism. Do I have Autism?" Jacob asked me as we entered the parking lot of the school. Could his timing have been any worse, as I knew I only had a few minutes before it was Jacob's turn to exit our vehicle.

"Yes, you do, Jacob, remember when I told you that before?" I told him. "Do you know what that means?"

"That I talk a lot!" he answered.

I laughed.

"T talks a lot, and I talk a lot," Jacob said.

"You are right. You do talk a lot! But it really means that your brain just thinks differently than other people."

The silence from the backseat made me wonder if he was paying attention or if my words had been lost again. I turned around expecting Jacob to have moved on to something else. Instead I could tell he was thinking about my words.

"Do I think different than other people?" Jacob asked me.

"Sometimes, but that's what makes you awesome," I answered.

A huge smile spread across his face.

"I have cooking club after school today," Jacob said.

He had moved on. He had the information he needed for now, and just in time as we pulled up right in front of the school.

With a quick kiss and a hug he was out the door.

Round two, had gone well. Thank goodness, because the drop off line at school can be a dangerous place if you don't follow the rules.

 

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.

Lost Mommy

The other night I lost it.

Completely broke down, lost it.

I mean crying-so-hard-that-the-next-day-you-can't-even-put-your-contacts-in-your-eyes-and-you-feel-like-you-have-been-run-over-by-a-freight-train-numerous-times kind of lost it.

I usually hold it together pretty well. I don't fall into a pity party attitude regarding Jacob's diagnosis. I don't let the exhaustion get to me. I keep it together and remain strong. But sometimes, every once in a great while, it all gets to be too much and I break.

Let me back up a little bit. The last few weeks have been hard. It started with a call from the school nurse saying Jacob was in her office with a bad cough and wheezing. I had known he had a cough, but Jacob insisted he felt fine and I sent him to school assuming he was just getting a cold. The nurse was adamant that Jacob be seen by a doctor soon, so I picked him up from school and whisked him to the doctor.

After listening to Jacob's lungs, the doctor believed he could have asthma. She sent him home with an inhaler and instructions to return in a few days if not better.

Well, it didn't take long to get another call from the nurse. Jacob was not getting better, and in fact had gotten worse. We returned to the doctor, who ordered a chest xray to rule out pneumonia. She also put Jacob on an oral steroid.

"It may cause him to be a little more hyper than usual," were her parting words.

"You do know that he has ADHD, right?" I replied.

"I am so sorry," she said, "Good luck!" and we headed out the door with a new inhaler, RX in hand, and instructions to again return in five days. Luck. We were going to need it.

Let's just say, Prednisone and ADHD are not a winning combination. Jacob was full of energy to say the least. We decided to do the best we could and just get through the five days. Unfortunately that meant many hours of Jacob playing Wii, because it was just easier than scrapping him off the walls.

But the worst part, he was starving all the time. I found him standing in the pantry shoving cupcake after cupcake into his mouth with the wrappers around him as evidence. My mind even contemplated putting a lock on the pantry door. Watching our seven year old in the pantry was worse than any ABC After School Special about bulimia that I remember watching in the 80's.

And of course, Jacob also couldn't sleep. So those few precious hours at the end of the day I reserve for catching up on reality TV and margaritas were interrupted by a completely wide awake Jacob playing basketball at 11:00 pm.

Somehow we made it through those five days.

Besides gaining 3 pounds in that short time, the medicine had worked. I was incredibly thankful when we returned and Jacob's lungs sounded clear and his cough was almost gone. The doctor officially diagnosed Jacob as having asthma, and again sent us home with a different inhaler. This one would become his daily inhaler and be used twice a day.

I didn't give much thought about the inhaler. Jacob had used them before with no problems, so why would this be any different? Usually I immediately read all the warning labels associated with any meds. I naively assumed all inhalers were the same tossing the information in the trash, and Jacob began taking it two times a day.

That's when things got really difficult.

Suddenly Jacob was upset about everything, and particularly upset with his dad. He started hitting again. Arguing with the neighbor kids. And screaming like I have never heard him.

The one night Jacob stood on the stairs and just screamed. He was mad. His dad had turned off the baseball game he was watching because Jacob was supposed to get in the shower. Instantly the baby sister started crying. She was terrified of her brother, and I was shocked as I had never heard him like this before. I removed the baby sister and settled her in another room with Dora, and returned to hear Jacob scream at his dad, "SHUT! YOUR! MOUTH!"

Where was this coming from? We don't talk that way, and all over something so trivial. It's not that Jacob doesn't have these moments. But this was turning into moment after moment, after moment. The entire week had been like this. Was this some kind of turning point? Was Jacob turning into the defiant child I read about that many parents of kids with Aspergers deal with on a daily basis?

The next day was the same. More hitting, more yelling, more arguing. But the worst was the mocking and laughing at everything my husband and I said. That night, my husband quickly volunteered to run an errand for me and then had planned on stopping to see a friend. He needed a break, and I didn't blame him. Jacob had been picking at my husband for a week at that point, and I could tell it was wearing on him.

That night was when I lost it.

I was trying to put on my bravest "nicey-nice" smile, taking a kill 'em with kindness approach with my son. I figured the more pleasant I was, it had to make the evening better, right? My goal was to just get through the night with as little drama as possible.

It was going fairly ok, if ok means that the baby sister was sleeping prior to Jacob deciding to give me a little "pat" as he called it when I suggested he get ready for bed. As I tried snuggling with my son to calm him down, I realized he didn't even care.

I kissed him good-night and before I had hit the bottom stair, the tears were falling. Even good mommies can't always hold it together.

The weeks had been too much. Too much stress, too much yelling, too much walking on egg shells. It had all been too much, and the waterworks kept coming.

I cried for my son, for the fact that I never will know how "real" our connection truly is, nor will I ever know exactly how he feels.

I cried for my daughter, who too often has to play second fiddle to the demands of her brother, and has to witness his meltdowns,

I cried for my husband, and for the helplessness and failure he was feeling as a father, and for the grief he felt for the father/son relationship he had envisioned long before Jacob was born.

I cried for our marriage that typically gets brushed aside instead of tended as it should, and for the wife I had intended to be when 15 years ago we married and had no idea the daily tole Autism can take at times.

I cried for the mother I thought I always would be, but somehow never have the time and energy to do it all, and I wonder every day if I am letting my kids down.

And I cried for myself. For all the times I feel lost in the world of Autism. For all the days when there is no "me" to be found. For all the goals and dreams I had for myself that have been shelved away, much like many mothers.

I know it was selfish. But that night I felt like there was no "me" left to me. Our marriage, our life, our days, more often than not, revolve around Jacob. Typically it is the "Jacob Show" at our house, with Jacob dominating the conversations, activities, and moods of the rest of the family.

Sure it would be easy to say, don't let that happen, make it a priority to tend to those other relationships. That's much easier said than done. We try to find time for ourselves and our marriage, and make special points of doing things with just the baby girl. But more often than not, it all comes back to Jacob whether we realize it or not.

The next day I felt better. Sometimes that's all it takes is a good cry and let it all out to give you the strength to move forward.

As I headed out to work at church that night, I was secretly relieved to be leaving the chaos behind if only for the two hours I would be gone. As I drove, I thought of Jacob and again was worried that this was to become our new normal. I prayed over and over, "Please not my baby boy, please not my baby boy..." begging God to bring the smile back to my son.

And then it hit me.

I didn't even bother calling my husband. I dialed the number for the doctor's office leaving a message for them to call me ASAP.

Sure enough, the inhaler they had put Jacob on can occasionally cause aggressive and agitated behavior in children. The doctor said that it is normal for children with Autism/Aspergers to be overly sensitive to medications.

We stopped the inhaler immediately. The next day was better, and by two days out Jacob was back to normal.

Oh, we know that Jacob will still have his moments. That's our reality. But at least we know that there will be a little break in the action. That there will be smiles and laughter in between the meltdowns. That there will always be a little calm before and after the storm. And together, we will always get through it.

Autism is Not as Simple as Fixing a Roof: My Responses to Readers Comments Regarding 1 in 50 Kids Diagnosed with Autism

Why did I even bother to read the comments? I should have just stopped with the article. It was shocking enough.

New Government Estimate Finds 1 in 50 School Kids Diagnosed with Autism

It's a number I've watched go done at an alarming rate just in the past two years since Jacob was diagnosed. Before it was 1 in 121. Then last years shocker when the CDC came out and said 1 in 88. Even with that number, they estimated it could be much lower. So when I woke this morning and logged into Facebook, the first article I saw said 1 in 50.

Wow. I didn't even know what to think. Half asleep I read the article, but it didn't take long for the comments to jolt me awake.

We have a serious problem here, people. The statistic of 1 in 50 is shocking enough. Some would say it is an epidemic.

But the biggest problem lies in there are still so many ignorant people out there that are completely unaware about Autism. That's the problem. That's what needs to be fixed.

An example from the comments from the above article.

 

"Autism, huh? Ever stop to think that the number of kids diagnosed has something to do with people who get paid to treat kids with supposed autism?

If I'm in the business of fixing roofs, it's in my financial interest to convince you that your roof is in need of my repair services.

Get the point?" -Hk45

Well Hk45, let me tell you this. First off, if someone came to my door out of the blue telling me I needed a new roof, I would indeed get a second opinion. Now if my roof was leaking and it did have an obvious problem, I would inquire as to the appropriate services to fix it. I guarantee no one is going door to door selling Autism diagnoses to parents for their kids. These are parents that are struggling. Parents that see something is off with their child. No one convinced me that my son had Autism. In fact, the opposite was true, and for many years I was told my son was fine. Doctor after doctor "convinced" me that my son was a neurotypical child.  Friends and family all confirmed this. But I knew differently. After an official evaluation and testing, my son fit all the criteria for Autism. But it took years to get there.

Secondly Hk45, let me tell you that more kids getting diagnosed has nothing to do with someone selling their services. Autism services are rarely if ever covered by insurance and they are very expensive. Most people can not afford services for their child, and so instead that child goes without, leaving it to the parents to figure it out on their own. Instead of getting their child the help they need, they remain in limbo, with a diagnosis but unsure where to turn and unable to afford it anyway. A child gets a diagnosis of Autism from a doctor, not just some random storefront in a strip mall. It's the same as someone getting diagnosed with cancer, depression, diabetes, etc. Really, do you think doctors are out there convincing people they have cancer to make a buck?

I am guessing Hk45 that Autism has not hit your family. When it does (because it will) give me a call. I've been there and I know how overwhelming it is.

Get the point?

Or this comment...

"Autism is often a catch-all for any kind of problem encountered in school. I used to teach and most students who didn't "get it" as quick as other kids or had some other form of discontent blamed autism or said, "My doctor said I have...autism, ODD, ADD, ADHD....etc."" -jsoles2001

Oh jsoles2001, your comment saddened me the most. You were (are) an educator! We are supposed to be on the same team! Fighting for our kids! Wanting to make a difference! I have to say I am happy you said the words "used to teach" meaning you are no longer in the school system. How sad all those kids you quickly brushed aside because YOU chose not to believe a diagnosis. It explains a lot and supports what I hear from many other parents who are struggling or feeling they must fight to get the services their child needs while at school, simply because there are teachers like you who feel their own feeling about a child is more valid than a professional diagnosis. I pray that my son never encounters an educator like you, and am so thankful for the school he attends and their patience and belief in him.

And just so you know, my son "gets it" much quicker than other kids when it comes to math, reading, or academics. Autism is NOT a form of discontent.

And again by the same person...

"...A label makes one feel more at ease with not having good social skills - which can be acquired and learned and can build resilience. When someone adopts a label, then they don't think they have to do anything about but carry it around the rest of their life. We are not all the same, but it doesn't mean we all have a diagnosable illness to explain why we are not the same "-jsoles2001

 

Sorry to tell you jsoles2001, but again you are off base. So many parents I talk to who have a child with Autism are very hesitant to get that "label". For years I fought it, not having my son officially diagnosed because I did not want a label. It was only when I realized he was all ready getting an undesirable label by educators similar to you, that I knew it was time to get the correct label. It is easier for you to label a child as a behavior problem and brush them aside, versus a child with an IEP. You and I both know that once that child is on an IEP, there are many more requirements put on the educator. Easier for you to brush them aside. My son's label of "Autism" does not define him. Nor do I ever want him to use it as a crutch. His label isn't there for him. It's there to stop the ignorance and instead raise awareness and understanding for people like you who do not "get it".



Can't forget this one as well.

 

"A phone survey that only counts those who are willing to answer questions -- this seems to over-select for "helicopter parents" - parents who may be overly concerned with their children's lives. And it may also over-select for parents who are eager (for their own reasons) to have a 'special' child with medically validated problems. Anything to avoid ending up with a kid who is basically normal, but maybe not quite as outgoing, or verbal, or coordinated as other kids. There's nothing wrong with normal, but now that is being defined as 'boring,' or 'substandard.' It's like grade inflation for children's development -- if they aren't gifted, they must be autistic." -MattBlanc

 

Oh MattBlanc, you are so off base you have no idea. First off, I admit, I am a "helicopter parent". Not by choice, mind you. I often find myself jealous of those parents who are laid back, unaware of what their kids are doing, and not really caring. You see, I don't have that luxury. At two, my son would take off running in a crowd with no warning. At three, he could open our front door and would be found outside alone. At five, he would run down the street in the middle of the night, terrified of unrealistic fears. Even now at seven, he still will run off for no reason. I have to be very involved in every aspect of my son's life for his own safety. Aside from safety concerns, my son lacks in social awareness. My husband and I are there guiding him through life as much as we can. Teaching him personal space, how to have conversations, how to play with friends, etc, etc. He knows none of the unspoken rules of language that we all take for granted. Tell my son to "hold his horses" and he is looking around for some reigns.

Now I really take offense to you suggesting that parents are eager to have a child with special needs. "Anything to avoid ending up with a kid who is basically normal". Seriously? You honestly think that someone would chose to have their child diagnosed with Autism? That is the most bizarre thing I have ever heard. The next time my son is having a meltdown, hitting, kicking, scared, crying, screaming, over something so incredibly small as a change in our routine, I'll invite you over and you can explain to me how I was eager to have that be a part of my family's life.

I agree with you that there is nothing wrong with normal. But as my uncle likes to say, "Normal is just a setting on the dyer". My son looks very "normal". And many times he acts very "normal".

Your last comment completely shows your ignorance about Autism. "It's like grade inflation for children's development--if they aren't gifted they must be autistic." I hate to break it to you MattBlanc, but more often than not, kids with Autism are extremely gifted. My son taught himself to read at age 3. I never sat down and worked with him on it. He just did it. At age 7 he is very advanced academically for his age, and is gifted musically. There is no grade inflation needed. But socially, yes, he struggles and is years behind.

On the heels of National Autism Awareness day April 2nd, the comments following this article show me how much work there still is to be done. There are still many people who are closing their eyes to Autism. So many people who have their own preconceived ideas and knowledge of the subject, yet lack the personal everyday insight.

It's time.

It's long overdue.

I ask you to please help spread the word about Autism. These conversations are needed to stop the ignorance. Help me make the world an accepting place for my son.

It's time to get real about Autism.

Autism isn't as simple as "fixing a roof".

 

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