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".

 

...See More

 

Searching for Answers...and Finding Confidence

 

 

It happened yesterday.

It's been a while since it's happened. In fact, I'm not even sure I can tell you the last time. Which is great, considering it used to happen frequently and with much more fanfare.

Yes, my husband had to physically restrain Jacob while we were out and safely get him to the car.

Which means people were staring. I don't blame them. I'm sure they were curious as to why this child who appeared old enough to know better, was yelling in the store. I'm sure they were right there ready to intervene if needed, as he screamed, "No Daddy!" wondering if indeed Daddy was acting appropriately. I get it. But that doesn't mean I like it.

It used to be a nasty scene, of Jacob hitting, yelling, and just throwing an all out fit. When he was younger, we could simply scoop him up and carry him out of the store kicking and screaming, swiftly putting an end to the moment. We still got stares. Sometimes they were stares of disgust, an all-knowing look of "your kid is a brat". Other times it was a look of sympathy saying "I've been there". But as Jacob gets older the looks have changed, becoming less accepting, and getting him out of the situation is no where near as quick and easy.

I had a feeling yesterday as we pulled into the packed parking lot that it was not going to be a fun trip to the store. Our area had just been hit with a bad snowstorm, and another was looming, so the store was packed. So packed we had to park at the very end of the parking lot.

As always when something is out of the ordinary, I prepped Jacob for what to expect and what was expected of him. We went over how the store was very busy, how we were in a somewhat hurry as we were heading to church after running our errands, and how it was expected of him to stay by us and use walking feet in the store.

I always say that, but rarely does it happen.

We stepped into the store, a big box retailer, and Jacob was thrilled to spy a sample station up ahead. "Samples!" he yelled and took off in search of something yummy despite the fact that we had just finished lunch not ten minutes prior, and forgetting my request of "walking feet".

While I weaved through the mass of people making my way to the pharmacy, Jacob began to fill his tummy and strike up a conversation with the sample lady, an older woman who seemed pleased that this young boy was so interested in her product.

Sure enough after filling my prescription, I found Jacob standing in a packed aisle with the sample lady scouring the shelves for the last box of coconut chocolate energy bars at $5 a box. They found one, and Jacob began filling our cart with boxes of various flavors while the sample lady scurried around through the mess of people in search of coupons for me.

"We are not getting him energy bars!" my husband announced. "The last thing he needs is more energy, and they are $5 a box!"

I knew we weren't getting them. I had no intention of getting them for Jacob. But I also didn't want a meltdown right here in the middle of a packed aisle and with the sample lady there to witness it all. Instead we guided Jacob to the cereal bar aisle, and let him choose whatever he wanted. The aisle was still packed with people and Jacob was adding to the congestion as he went back and forth on what to choose. But in the end, he was happy, I was happy (at $1.50 a box who wouldn't be happy) and the energy bars were put aside.

We passed the sample lady and proceeded to the check out, meltdown squashed before it even started.

Ahh....but I shouldn't have been celebrating a victory so soon. As we stood in line waiting, Jacob noticed the CDs lining the endcap. "Mom, look. They have the NOW 45 CD," he told me. "I wonder if they have the NOW 43 CD here?" Jacob asked.

As I unloaded my items onto the conveyor belt, I notice that Jacob has politely pushed his way to the front of the line. The woman standing there graciously stepped aside as Jacob cuts in line, interrupting the conversation the cashier is having with the woman.

"Excuse me," Jacob says, "Do you have the NOW 43 CD?" he asks the cashier.

"Jacob, get back over here," I say and thankfully he obliges. The cashier clueless as to what my son had asked, continues on and the woman pays for her items.

"But mom! I just want to know if they have it!"

As the cashier begins our transaction, I explain to Jacob that the cashier couldn't possibly know if they have a certain CD in the store. And then opening my big mouth, I tell him that only the people working in electronics would know the answer.

Jacob was off.

He was heading for the electronics department, determined to get his answer to if they did in fact sell that CD. He had no money of his own, and he knew we don't just purchase items for him for no particular reason. But he had to know the answer, and he was off to find it.

My husband took off after him as I continued checking out. It wasn't long before they returned, my husband gently guiding Jacob toward the exit. As we moved as a family together, me pushing the cart with the baby sister in it, and my husband physically holding Jacob by the shoulders helping him walk, Jacob began to yell, "No Daddy! No!"

Of course people looked. Out of curiosity. Out of concern for this child. Out of judgment. They looked and stared, and my non-reactive husband did what he needed to do. He kept hold on my son for his own safety and walked him toward the door.

The stares don't bother me like they used to. For the most part I don't even notice anymore. When Jacob is having a moment my focus is on him and his safety. But for one moment as we passed the Starbucks located by the exit, I happened to look up, and I saw the sea of faces looking our way.

"Just get to the car," I kept thinking to myself. But we had an entire parking lot to walk, a parking lot full of impatient drivers trying to stock up for a snowstorm. None of those drivers were concerned about my son's safety. Their minds were filled with finding a parking spot, or their list of items needed if they happened to get snowed in for days. A child darting out of nowhere was not on their radar. But that was all that was on my mind.

In situations like this my husband and I both know how Jacob will react. He's a runner. And he wanted nothing more than to run back into the store to find his answer. And boy was he trying to get away from my husband.

"Daddy, let go!"

"No, Jacob, there are too many cars and I want you to be safe," my husband replied again not reacting.

"I promise I won't run, Daddy!" Jacob replied.

My husband wanting to trust our son loosened his grip slightly, just enough for Jacob to wiggle loose, and sure enough he darted out into traffic.

I screamed at my husband to grab Jacob. Thankfully he was fast enough and got hold of him again just as a car came barreling down the aisle.

I didn't care what people thought of us at that point. I didn't even know if anyone was looking at us. All I wanted was my son safely in the car so he couldn't bolt at a moments notice. I wanted him safe.

"Just get to the car, just get to the car..." I repeated in my mind.

We got there, finally, after more attempts at running, more yelling, and more chaos.

As my husband and I reflected on it later, we realized we handled it poorly. Sure we didn't react, not like we would have years ago pre-diagnosis when we were frustrated and unsure what was going on with our son. We've learned to keep our emotions in check when Jacob is upset. When we escalate, it only escalates the situation more. So we did a great job remaining calm despite how upset our son was about not finding the answer to his question.

In that regard we have come a long way. We've learned a lot on how to handle difficult moments with Jacob. With each meltdown, tantrum, or fit, as we dissect it after the fact, we realize what WE did wrong, and how to be better for next time.


What if we had simply let Jacob ask? What if we had waited those few extra minutes as he politely asked the electronics employee if they had the CD giving him his answer? Sure we may have been a few minutes late for our meeting at church, but Jacob would have been satisfied, and he would have walked out of the store on his own.

It wasn't Jacob's fault. He couldn't stop. He HAD to know the answer right at that moment. There was no reasoning, he was on a mission, and he needed to complete it. And we foiled his plan.

The silver lining in all this is, here is this sweet, polite boy who has enough confidence to ask the sample lady where her product is located. Confident enough to kindly ask the cashier for assistance. Confident enough to march over to the electronics department alone to find his answers. It doesn't matter where we are, the library, the store, a neighbor who happens to be outside, Jacob will not hesitate to strike up a conversation. It's times like this I am so proud of him. A boy who at seven struggles buttoning his pants, or opening a straw, yet believes in himself enough to seek out answers on his own.

So today I am joyful for my son's confidence. I am thankful for the great partner I have in parenting our son. And I am humbled in knowing that we will never have all the answers to parenting our son. And that is ok, as we continue to learn something new from Jacob every day in this journey as he searches for his own answers.

Valentines Smalentines!

I dislike school parties.

The funny thing is, before my kids were in the school system, I had visions of me being the perfect room mom. It was totally my thing. I love to bake, crafts, games, all of it. As a kid, I had loved school parties filled with cupcakes with too much frosting and games of "Heads Up 7 Up".

But not anymore. I detest them.

Yesterday was Jacob's Valentine's Party at school. Of course, the first thing he asked when he knew about the party date was if I would be there. And of course, I said "yes" not wanting to disappoint my son or have him be one of the few kids without a parent there.

The party itself was fine, your typical school party with cookies, treats, and bags decorated with hearts and filled with Valentines. There was a craft that Jacob struggled with and didn't want to do, but finally he did glue two googly eyes on a heart and made a smile, a half hearted attempt at a Valentine for the baby sister. And there was a game, that again proved to be a challenge for Jacob where he was to suck through a straw and pick up conversation hearts. But as I looked around, I realized that Jacob was not the only one struggling with this, and it brought some relief.

But the real reason I dislike school parties is, it is quite apparent that Jacob is on the outskirts.

In October when I helped with the Halloween party, Jacob's teacher had announced that the everyone could shift their chairs around to sit near a friend for the party. As I watched Jacob trying to figure out where to go, my heart hurt. No one was calling out, "Jacob, Jacob, come sit by me!" He ended up scooting his chair closer to a group of girls in the back who thankfully seemed ok with it.

It's always been like this every year. Thankfully this year his classmates are much more tolerant and accepting of Jacob. In past years, I witnessed kids being just plain cruel to him at parties. Many times, they wouldn't hesitate to tell me that Jacob annoys them, or they would ask questions, "Why does he make that noise?" or "Why does he always talk about baseball?" The worst was when a boy in his class walked up and yelled as loud as possible in Jacob's ear, knowing how Jacob did not like loud noises.

So yes, it could be worse. Jacob's new school has been a good fit for him. And his classmates are good kids. But as a mom, that doesn't make it easier seeing the rest of the class connected, and your own child alone.

Oh, I try to connect with the other moms hoping that will help. But it seems like they are all connected as well. You can tell that they know each other outside of school from playdates, birthday parties, or sports. And as much as I try to connect, it just doesn't happen for whatever reason.

The thing is, Jacob either doesn't care, or doesn't notice, I'm not sure which one. On the way home from school after his party, I asked him who he liked spending time with in his class. He told me "no one really". He then changed his mind and named two girls that were nice. But the thing was, it didn't seem to bother him.

So I know it's my problem. It bothers me. It's hard to see and it just tears at my heartstrings for my son. Why? Because I think that is every humans desire, isn't it? To connect? So if it doesn't bother Jacob, and he doesn't seem lonely, and he seems happy, why can't I let it go?

Because I want that for my son. I want him to have those connections. Those true friendships. And I know the importance of friends.

We try to help Jacob socially.  He doesn't always know how to interact with his peers. He wants to be their friend, but many times his intensity pushes them away. So my husband and I usually take on that role of helping him make that connection with other kids. But it's hard to know when to give that gentle push, and when to realize it is ok.

Yesterday afternoon, when we pulled up to our house, Jacob saw about 8 kids from the neighborhood playing basketball. He quickly exited the car and ran down to join them as fast as his legs could carry him. For the next hour off and on, I checked on him, finding him still enjoying himself playing basketball with the neighborhood boys.

But after about an hour, I looked outside to find Jacob in our front yard with his yellow plastic bat hitting whiffle balls across the street. I could tell he was deep into his own make believe baseball game, imagining he was all of his favorite MLB players.

As I looked down the street, there were all the neighborhood boys still playing their basketball game, while Jacob was doing his own thing.

Jacob finished his nine innings, and came loudly through the door. I asked him why he had stopped playing basketball with his friends.

He answered matter of factly, "Because I wanted to play baseball, Mom."

He had chosen to be on the outskirts. He had played with his buddies, but he was done. He wanted to be by himself doing what he loved most. He was ok with it.

Now I had to learn to be ok with it, too.

It Was Time

It's hard for me to believe it has been a year since I started my blog. Time goes so fast. No matter how hard you try to hold onto it, it slips away unnoticed.

I admit that a year ago, more days than not, I was wishing them away. We were in a bad place. Jacob's anxiety was at an all time high. Our life was in a tailspin and we were just barely staying above water.

As much as I would like to slow time down to remember each smile, laugh, and moment with my children, I can't say I would want to return to where we were a year ago. The days were long, the nights even longer. Time couldn't go fast enough. Every night was a meltdown filled with screaming, crying, hitting, and pure fear. Jacob was scared of everything at the time. I remember thinking, "Is this our normal? Is this going to be our everyday for the rest of our lives? Is this all our baby girl will know growing up as she observes her big brother?"

Last year, Jacob's meltdowns started coming more and more frequently and lasting for hours. The littlest things were setting him off. Nights were awful as Jacob's anxiety was at a peak. Every night he would cry sometimes for hours about things that scared him. And it seemed like new fears were popping up out of no where. It felt like our world was spinning out of control.

It was time.

As much as my husband and I were opposed to medicine for the longest time, we knew something had to be done. We had a prescription for anti anxiety medicine for Jacob before. We had even filled it, but after reading all the scary literature that comes with it, we opted to wait it out. But this time was different, something had to be done. Jacob's doctor had told us we would know when it was time. Our life was being upset daily at this point. It was defininetely time to give medicine a try.

No parent WANTS to give their child medicine, particularly one that could alter their personality and has tons of undesirable side effects. Jacob had never even had cough medicine in his life, and here I was going to give him something that came with a warning sheet from the pharmacy, which of course brought new worries for me.

Would it change my son including all the wonderful things I love about him? Would it make him sleepy as it suggested or change my energetic son who is always on the go? Would his tummy hurt like the pharmasist said to expect? Would my little boy no longer be the same from this day forward?

All those thoughts were racing through my head questioning if we were making the right decision as I helped my son with the syringe giving him his first dose.

That first day was hard. I was a wreck nervous for all the possible outcomes, referring back to the possible side effects sheet numorous times. But with each day it got a little easier to give my son his medicine, to where soon it became old hat.

And with each day, the meltdowns became less, the fears subsided, and my son's smile returned. 

I'm not saying medicine is the solution for everyone. I still have a love hate relationship with medicine for my kids. Sure anti anxiety medicine changed our life for the good in so many ways, and I am grateful for that. But I am still leary about giving anything to my kids.  In fact, we have a prescription for ADHD medicine that we have had for close to four months yet to be filled. We just can't do it, add another medicine to our child. I've read too many horror stories. Like our doctor told us before, we will know when it is time, and right now, it's not time.

But I know not to get too comfortable. I don't even let myself think, "Is this our new normal?". Instead I continue on the journey given to me enjoying each day and treasuring every moment while time continues to slip away.

And I thank God each day that we are in a good place, a much happier place than we were a year ago.

*Ants in Pants and Pie Thrower*

Jacob hates getting his hair cut. I mean HATES it.

When he was little, it was a source of a sure meltdown. It didn't matter if there was a promised sucker at the end. Nothing could stop it. (On a side note, I've often wondered why hair shops give kids that are covered in loose hair suckers as a reward)

Anyway, with every hair cut came a fight. I dreaded taking my son to get his haircut. As a toddler, he would kick, hit, scream, and do anything short of getting us bounced from the shop. As Jacob got a little older, and realized it was happening no matter what, the kicking stopped, but instead came the constant wiggles and fidgeting. The hairstylist all but put him in a headlock to keep his head from bouncing all around. Sometimes they are nice and just get a little snip in here and there until it is done, while others you can tell are genuinely annoyed. Many a time you can see where one snip went a little too far compared to the others, and there is a visible unevenness to his hair.

I'm sure in some haircutting database somewhere there is an asterisk by Jacob's name that says "Ants in Pants"!

And I get that he hates to have his haircut. He has Sensory Processing Disorder, so of course it is a MAJOR sensory issue. He very much dislikes anyone or anything touching his head. Getting him to take a shower for the first time was about impossible. He still has to take his time getting his head wet when stepping in the shower. It's as if he coaxes himself into it.

How ironic that the poor boy was blessed with a mop of hair. I mean thick, thick, thick hair that grows incredibly fast. At the age of six months he had so much hair, I would have servers at restaurants trying to give him a kids menu. The kid was barely starting his pureed veggies, and people assumed he was so much older by the hair on his head.

And so each time we begin mentioning that it is time for a haircut to Jacob, we are meet with much resistance. His new thing is he will say, "But I can still see! I don't need a haircut!"

But this time, he could barely see any longer. His hair was so long he had to do a flip similar to Justin Bieber to be able to see.

The other morning Jacob walked into the kitchen greeting my husband and I with a "good morning". He was dressed and ready to go for the day, and I could see he had wet his hair to get it managed for school. I tried not to laugh, but I couldn't help it. Jacob was sporting a comb over that even The Donald himself would be jealous of! My husband and I both lost it. It was hysterical. Yes, it was indeed time for a haircut.

Jacob didn't think it was funny and said, "Stop laughing at me!"

We tried stifling our laugh and explained to Jacob that we weren't necessarily laughing at him, but with him. See, that's another thing he really dislikes. Being laughed at.

But who does like being laughed at? No one. I get that. It's more being the center of attention and not understanding what is going on that bothers Jacob.

I remember vividly at Jacob's first birthday party. He was sitting in his highchair with a blue birthday boy party hat on top of his head. All of my family was crowded in our little kitchen around him and we began to sing happy birthday to Jacob. Instantly he began to scream! Of course at the time we were years from a diagnosis.

It wasn't just his birthday party he cried at. Any time the song "Happy Birthday" was sung, Jacob burst in to tears. This went on for years! Just in the past few years have we been able to actually sing at parties in our house.

But it wasn't just parties. Many a time I would be pushing him as a toddler or preschooler through the check out lane. The cashier would be smiling at Jacob lovingly and maybe even make a comment about how cute he was, when sure enough he would scream, "STOP LOOKING AT ME!" Ah...such a cute thing to come out of a 2 year old's mouth.

He used to lunge at, hit, or kick when he thought someone was laughing at him, or looking at him. Thankfully over the years he has gotten over that impulse and can now control it.

Just this past Christmas at our church's service, Jacob wanted to go up and sit for the children's sermon. He had never done it before and I was nervous and proud of him all at the same time. It was something he never would have done a year ago. Heck, he couldn't even make it through a service a year ago. The pastor asked the kids a leading question, one as an adult you know will bring funny responses. Sure enough, Jacob raised his hand super high and got called on. And sure enough, his response got a laugh from the congregation. I watched as that all too familiar look came across Jacob's face. He looked around wondering what was so funny because to him, his answer had been quite serious. In just a split second I said a silent prayer, hoping that he wouldn't scream out, or worse yet hit the pastor sitting next to him. Thankfully the congregation laughed at another child's response and I saw Jacob visibly relax in front of me.

So yes, for the most part he can control it. But every once in awhile, something still happens.

My husband had volunteered to take Jacob to get his haircut. Not sure if volunteered is the correct word, and I do admit that this task is typically reserved for him. He made a reservation so it wouldn't be as long of a wait.

It didn't take long, and they returned, Jacob with a pretty good new hair cut. At least no major chunks taken out.

"How was it?" I asked my husband.

"Well..."

He went on to tell me how Jacob was wiggling all over. Wouldn't sit still and they were having a very hard time cutting his hair. And then right in the middle of it, a huge crash came from the backroom. Apparently the entire shelving unit holding all their hair products completely fell over. I'm sure it was a huge crash, and probably made Jacob even more unsettled than he already was. So then the hair stylists where all laughing and discussing it, when Jacob got upset and yelled, "Stop laughing! I'm going to throw a pie at your face!"

Yeah...he's not exactly the best at knowing what to say when upset or frustrated.

I'm sure they had no idea what was up with this kid or why he was threatening to throw a pie that was no where to be seen. At least "haircut" can be crossed off the list, for a few weeks anyway. I'm guessing they will be ready for Jacob next time, as I'm sure the asterisk was added after he left.

*Ants in Pants and Pie Thrower*

I Have a Dream for My Son and Autism

We talk about differences a lot in our family. I want both my children to grow up knowing that different is not less. Different is ok. In fact, different is better than ok. Different is a reason to celebrate.

Often we talk about how God created everything and everyone, making them perfectly different and special. I want my kids to know that they were made perfect.

I know the time will come when Jacob will realize that he is different. Maybe it will come from his own realization, or maybe it will come at the expense of some other child making fun of my son. I don't know how, but I know it will happen at some point.

What is most ironic about that is, that Jacob longs to be different. In kindergarten he came home from school demanding to know why he wasn't able to speak Spanish like some of his friends in class. Even in preschool at the age of four, he wanted to know why he couldn't have dark skin like his friend.

Just last month after school while getting in our van, Jacob said to me that his friend "L" was different. My response was a simple "Oh yeah?" waiting to see what more he had to say about his friend who he eats lunch with who happens to be African American. "Yeah, L has a peanut allergy! He has to eat at the special peanut table for lunch and asks me to sit with him. Why don't I have a peanut allergy?"

So my son is jealous of his little friends and their differences, wanting for himself to be different. He knows that differences are something to be celebrated. Yet he fails to realize that the world already sees him as different.

Sunday night as we were driving home, I said to Jacob, "I keep forgetting you don't have school tomorrow," knowing that Monday was Martin Luther King Jr. Day. Thinking it would be a teaching moment, I asked Jacob if he knew why he didn't have school.

"Because it's Martin Luther King Jr. Day!" he announced from the backseat.

Wow! I was impressed he knew the name, and even correctly, but before I could ask more, Jacob went on.

"He did great things to make life fair for everyone, because a long time ago black kids had to go to the bad school, and white kids got to go to the good school, and that was just wrong. Then everyone could go to the same school. And before black people had to sit in the back of the bus, and white people sat in the front, and sometimes black people couldn't even sit, and that was not fair!"

Wow, again! I was shocked that he knew so much. He must be paying attention more in school than I thought. So much for that ADHD diagnosis!

He then went on to talk about God making everyone special.  Such a pure message from a seven year old boy. A boy who many would see as different. Who others would not be so willing to accept.

Martin Luther King Jr. fought for equal rights. Whether at that time he knew he was fighting for my son as well, I doubt it. But Martin Luther King Jr. did help pave the way for my son. Forty years ago Jacob's lack of eye contact would have been viewed as disrespectful. His need to pace the classroom would have been considered defiant. A proper education wouldn't have happened for my son. There wouldn't have been paras for additional support, or IEP meetings to keep him on track. No, my son would have been left behind, pushed aside, viewed as less.

So today I thank Martin Luther King Jr. for what he unknowingly did for my son and others by bringing equality to the forefront. But there is so much further to go. Autism is just in the beginning stages of being understood and respected. Although we have made progress in the last forty years on Autism, the road is still quite long. Inspired by Martin Luther King Jr., I will never become silent for my son and for Autism.

I have a dream of my own. A dream for a world for my son that learns acceptance and equality for everyone. That sees different as more, not less. I have a dream where judgment is replaced with understanding. A dream where someday we will be able to prevent Autism. A dream where someday treatment is affordable and available to everyone. A dream where everyone's hearts are as accepting of differences as my sweet son.

Do you have a dream?

Mommy, Tell Me a Story

"Mommy, tell me a story," I heard just as I turned from tucking Jacob in bed.

"Jacob, it's late," I answered. I was tired, and it was late, or it seemed late. "Not tonight honey." I blew him another kiss and continued toward his door.

"Tell me a story about when you were a little girl."

I stopped. Did I hear him correctly? Was he asking about me?

That doesn't happen. All too many times I have tried telling Jacob about different moments in my life growing up, to which he either doesn't pay attention, doesn't seem to care, or is totally lost in the concept that I was ever a child.

Usually when I do try to bring up something from my childhood, if Jacob is listening, he wants to know if Grandma was my mom and if Papa was my dad. But that is about all he knows or cares to know.

So this was different.

Typically our goodnights don't look like that. Usually it is lots of reminders and redirects, keeping Jacob on task, and finally once he is ready, it all comes together and he heads to bed. There's lots of jumping and bouncing. Usually Jacob is chasing his sister back and forth from room to room, and finally my husband and I divide and conquer, using one on one defense to wrestle each child to bed.

Many times as I tuck Jacob in bed, he is already looking at a book, humming his own little tune. I say goodnight and tell him I love him a few times, and many times there is little response as if he is unaware that I have even said a word.

And if he is talking, it's usually about baseball or some animal fact, or he may be trying to negotiate different terms for playing his Wii, attempting to convince me that it doesn't turn his brain to mush. Rarely is it anything too deep, and if it is, it is usually some new worry Jacob has formed. But never is it him taking an interest in me.

It was an opportunity I could not pass. I walked over to Jacob's bed, knelt beside him to where our faces were inches apart, and began to tell him about myself as a little girl in second grade.

Oh, he laughed when I told him my teacher had been very old and not very nice, and how we called her "Moldy Tower" because she was like a giant. Or at least a giant in my second grade mind.

I told him how I had loved playing in the corn table and doing the "Parade of Colors" song in Kindergarten. I told him how at recess in fourth grade, we would all line up staring at the house beside the school yard convinced it was haunted. I told him how there were no electronics, no cell phones, no computers, and no cartoons other than on Saturday mornings, to which he was mortified!

But the story he loved best was when I shared with him how at lunch in second grade the boy across from me desperate to get a butter sandwich for cleaning his plate, had scooped his broccoli into his empty milk carton to hide it, forgetting that at the end of the lunch period the teachers would walk around the room shaking each carton to make sure we had indeed drank all our milk. Sure enough, that boy had to drink his milk, which by then was a nasty broccoli soup!

While we laughed together, I felt really connected to my son.

Those moments are rare. Sure Jacob loves us, hugs us, snuggles us, and desires to be near us. He talks non-stop, so it's not that there is a lack of words. It's just sometimes those words seem like they are on the surface, never breaking into anything more than baseball and animals.

The other night, my husband desperate to connect with our son at dinner (and also as a ploy to keep him from playing electronics), devised a ten question quiz trying to engage Jacob beyond the typical conversations. It didn't work for much other than keeping Jacob from playing his Wii. Although Jacob did take it serious and requested another quiz the following night.

Last night as I was tucking Jacob in bed, he asked me, "Mommy, do you have any more stories to tell me about when you were a little girl?"

Maybe it was a new stall tactic from going to bed. I don't know. But I'd like to think Jacob really wanted to just be near me and connect. I really want to believe that he was interested and wanted to know about me.

So again, I tucked him in, and snuggled up ever so close and told him the story about how when I was a little girl on my birthday, I went to our annual town's Burning of the Greens celebration where everyone's discarded Christmas tree became a huge bonfire. And one little girl got to be the princess for the night, the one who was lucky enough to find the hidden peanut in her cupcake. And that year on my birthday, I was lucky enough to find a peanut.

"Mommy, do you wish every cupcake you ate had a peanut, so you could be a princess everyday?" Jacob asked me.

"No, Jacob, I'm happy just being a mommy," I told him.