Quirky Behavior

This is a video from last night. We were all in the kitchen, cooking dinner, and Corey pulled out his camera phone to capture Ethan. In this video, you will see a couple of things. 

First you will hear Ethan's speech. He has come such a long way thanks to speech therapy & hard work. However, his speech is still considered delayed as well as non-typical. In this video, Ethan is drawn to the comfort of a memorized speech....in this case a Pizza Hut commercial. This is very common at our house. You will also notice that in order to pull him out of that rote response, I use the commercial as the topic but engage him in a non-scripted conversation.


Also, you will see several odd behaviors. These are some of the red flags that caused us to wonder if Ethan had autism. Notice the big yoga ball? We use this as part of Ethan's OT at home. We use it for several different types of therapy.....rolling on it for balance, bouncing on it to wake up his system, rolling it on his body to calm his system, and so on. The thing you will notice, however, is how he is rhythmically "banging" his head on the ball. This is just something he does....we don't encourage it or discourage it.....we just pretend like he's not doing it & make sure he can't hurt himself. Most of the people that we have talked to say that this is self-soothing & Ethan needs it.

You will also see that at one point, Ethan runs into the living room & does a hand-stand on the couch. He does this A LOT! He LOVES to hang upside down. And typically he will do this for a longer length of time than seen here. Although it isn't in this video, Ethan also likes to spin in circles. These are all behaviors that Ethan exhibits that were considered "odd behaviors" at the Autism Diagnosis Clinic.

I hope this video doesn't disturb you, but rather informs you....this is my intent in posting this video. To us, this is typical behavior because this is just what Ethan does.....and I guess we are used to it. And I know it's not the "correct" answer, but come on.......who wouldn't put birthday cake on their pizza!!!!????

A Powerful Alliance

Sick Day Activities

It started with a fever and now it has become the flu. Poor guy. Ethan has been at home with me all this week due to being sick. However, he isn't the type to lay around when he doesn't feel well. He will get sick & just keep right on playing. So I have been encouraging "low-energy" playing. Here is what we have been up to this week.....

It first started with $1 pack of stickers I purchased at Walmart. I bought one pack for each of the kids, and pulled out 11x17 construction paper. We wrote each of their names in large letters on their paper, and then I let them create whatever they wanted to do with stickers. Ethan was at the table longer than the other two kids......not typical Ethan behavior. I was at the table doing my own crafting project when I realized what he was doing......

The final product! He must have learned this at school. LOVE!

Later, while we were sitting on the couch trying to rest, we started playing Ethan's new game, WHO SAYS THAT? I will say a commercial's tagline or jingle, and he will tell me to whom it belongs. Well, I can't remember everyone's commercials like him, so I pulled out a piece of paper to make me a cheat sheet. And he LOVED helping me make a list of all of the commercials and their taglines. So, here is one side of our list. It was a great way to have him sit down & rest yet still feed his knowledge-thirsty brain.

Part of my Who Says That? cheat sheet

 
Of course most of the days have been filled with Ethan playing with cars. I gotta say.....I think I'm getting pretty good at my car sounds.....although I still don't compare with daddy, but I'm getting better! But here are a few other low-energy activities that we have been doing this week......

Ethan would use the magnifying glass to look for the animal I was describing. Then, he would put it on the white piece of paper. I would describe the animal with sounds, spelling, what they eat, color, where they live, etc. This was a LONG game.

 

After playing with the Lite Brite the "correct" way, he began to play this game.

 

 Treasure Hunt in our Rice Box

 

 This is typically what he likes to do with the rice....make it rain. This is very calming for Ethan. LOVE OT!!!!

 

 One of my favorite blogs that I follow is LoudMommy. She often reviews Apps for iPad, and she reviewed this program awhile ago. However, we just purchased it for Ethan with iTunes gift cards that we received for Christmas. He LOVES it! It does sounds, patterns, drawing shapes, etc. It is called the Tickle Tap Toddler Pack by zinc Roe, and it was only $3.99. WORTH IT!!!!!

Literal Translation

I have come to learn that one common characteristic of people with autism is that they process what you say into a literal translation. And this has caught me off guard many times.....and I have had to re-think how I say certain things. Here are a few common phrases that we have had to re-word in order to help Ethan's understanding of what we are trying to say.....as well as prevent Ethan from being very upset......

1. "We are going to drop off Grandma." - I said this one day when Ethan & I were out shopping with my mom. I was in the process of telling Ethan our next few steps....including taking Grandma home....when I said this common phrase. As soon as I said it, Ethan began crying. When I finally realized what I had LITERALLY said, I had to rephrase it to, "We are going to take Grandma to her house." Immediately, he calmed down.

2. "Your nose is running." - I said this one day, and he started quickly moving his head back & forth....making his nose run. After I stopped laughing at his literal translation, I rephrased to, "Your nose is drippy." Then, I was able to show him how to wipe his nose with a tissue. That was so funny.

3. "Sit right here."....while patting the tabletop - I meant for Ethan to sit on the picnic table BENCH, but because I tapped the TOP of the table, he climbed up & sat "right here".....on top of the table. So, I reached my arm even farther, and pointed to the bench. Then, I restated, "Sit right here." And he crawled down & sat on the bench.

4. "The batteries are dead." - This phrase spun him into a meltdown so fast, I hardly had time to realize what had happened. He just kept saying, "Oh no, no, no!" over & over again. Once I could reason with him, I said, "Mommy has to fix it," and then I took him with me to help me change the batteries. I had him help me in using the screwdriver, throwing away the newly labeled "broken" batteries, & pick out the 2 new batteries. Once the toy began to work again, the smiled returned to his face, and all was well. So, now we just say that a toy needs "fixed".....nothing is dead. Yowza!

This week I have discovered a TV show called BONES. My husband & I are a bit squeemish when it comes to viewing skeletal remains as well as images that come up during the investigations. However, we have absolutely fallen in love with this show. Most of these characters are extremely brilliant but lack social skills. We joke that there are signs of autism in some of these characters including the lead female role of Dr. Brennan or "Bones" as her FBI agent partner calls her. They keep saying that she interprets things very literal......just like Ethan. During one episode, they open with Dr. Brennan doing a TV interview. Later that same day, a woman asks Dr. Brennan, "Did I see you on TV this morning?"......to which Dr. Brennan replied, "I have no idea what you saw on TV this morning." VERY literal......and so endearing!

Last week was a very difficult week. This week is already showing signs of improving, although he isn't feeling well AGAIN. When the hard days come, I just need to remind myself of the traits Ethan has that I cherish. And this characteristic of interpreting things literally is one of them.......just one of many.

A Difficult Week

I am writing today with a heavy heart. I am typing at my computer while tears are streaming down my face. I am on my 4th cup of coffee, and it's only 10am.  I try to always be on the positive side when it comes to living with autism. To look at Ethan's victories over his challenges and not to dwell on his challenges he still faces. But this week has taken it's toll on me....and I need to write.

Ethan & his Daddy had an AMAZING time last weekend. Ethan made HUGE strides, and I am so excited for him. Monday, we all had the day off of work due to the Martin Luther King, Jr. holiday. It was another great day. So, Ethan has only had school 4 days this week.....and every morning we have endured a 20 minute meltdown.....and I don't know what is triggering it.

From the moment we start getting ready for school (putting on socks, shoes, gloves, hat, coat, etc....) until the moment he sees his school, he is in tears. He is so upset that he can't "use his words".....and I have no idea what has changed. Obviously something has, but to me....it's business as usual. We still are doing everything that is routine....everything on his "list".....so I'm continually wracking my brain to figure it out.

Then, yesterday, the school told me that he had a bad day at school too!? Then, I was playing a Memory Game with him last night, and it was meltdown after meltdown. If he didn't make a match, meltdown. If it was mommy's turn, meltdown. If I said "YEAH" when I made a match, meltdown. This is a game we play all the time, but for some reason he wanted to to it HIS way, and anything else made him meltdown. What in the world is going on?????

I have pulled out ALL of my tricks. Even brought up some things from the basement that he no longer responds to.....but I figured it was worth a shot. We have limited his technology usage because sometimes that helps. The strange thing is that he is FINE when Daddy is around.....I'm thinking about pulling out one of Corey's dirty shirts from the hamper & wearing it!?!? Maybe smelling like Daddy will help? I'm so desperate!!!!!

Who knows what it is?.........
*Is it his new gloves?
*Do his clothes itch?
*Is there a new sound in the house that I am not hearing?
*Is he not feeling well?
*Is he having a growth spurt?
*Is he upset with ME?

OK....I know that last one seems ridiculous, but it's very hard not to take his behavior personally....ESPECIALLY when he is fine for Corey. Like yesterday, Ethan didn't tell me AT ALL when he had to go potty. BUT, minutes after Corey got home, Ethan went to him & said, "Daddy, I have to go pee!" WHAT IN THE WORLD??????

So, I'm at my wits end......literally. I have no idea what to do for Ethan. I don't know what's wrong or how to help him. So, after I came home from taking the boys to their schools, I got online to check my resources. My attention was drawn to a NY Times article talking about changes in autism diagnosis. As I was reading this article, my attention was drawn again to a video on the side of the webpage. I clicked on the video & began listening to the "Patient Voices: Autism". I immediately went into the ugly cry as I listened to Marguerite Kirst Colston talking about getting through bad days with her son who has autism. She put into words how I am feeling today, and it was so nice to know that others out there are having the same struggles. Her sharing her story has helped me endure a bad day.

Here's what she had to say...."I’m often asked what a typical day is like when you have a child with autism. My son Camden is full of life, full of challenges and full of excitement. He is non-verbal, needs significant assistance and has several medical issues. So, while there are schedules to our days, a day is never typical. There are good days and bad days, and I’ve learned that simply building more good days is the best goal.

On a good day, we conquer our world together. Good days usually start when we both have had enough sleep (there’s probably a research study out there confirming my theory, but I don’t need to see it to know that sleep is key). Schedules work, pictures are used and we both see minute-by- minute successes. Camden eats his breakfast and helps clean the kitchen. There is lots of running outdoors. Smiles and giggles are mixed with a determination to get that awful work task (in his opinion) done, so he can get computer time. We go to bed exhausted, but tired is a really nice feeling after a good day.

A bad day is when I don’t have enough reserves to help him through the day. It may start off with a tantrum over a certain shirt or wearing socks. I take the battles one by one. I likely end up wearing his breakfast, and he gets on the school bus a bit hungry. He self-stimulates more to try and cope; I drink a cup of coffee and put my head in my hands. At the end of that day, I think, “I can’t do this.” But the next day, I wake up and he’s my son, and, of course, I can do this. I can build more good days."


See?! She drinks a cup of coffee for her mini-breaks too!!!! So, I'm hoping this weekend will be full of observation & changes in order to discover what is triggering Ethan in the morning. Hopefully next week will be better.

A Helpful Email

This morning, I received a very helpful email!

"Hey Jessica, My team and I did the research and compiled this infographic as an introduction to Autism and Education in America. I thought you might like to take a look and share it with your readers/colleagues as a good introductory resource."

I left out his name for privacy reasons, but I am so appreciative of him sending me this information! You can either click on the link above or view the material below. It is such a visually pleasing & nicely organized way to explain all of the factors of autism. I love it! THANKS!!!!

A Hot Dog Rocket

I just had to post this really quickly. I have talked before about how particular Ethan is when it comes to food. It is a large part of his sensory processing disorder, and he is very adamant about what he will & will not eat. It helps if new food is cool....therefore not having a strong smell. And texture is a big issue as well. He has NEVER eaten any kind of lunch meat because it is too slimy feeling....on his fingers & in his mouth.

Ethan holding a hot dog during lunch

Well, today at lunch, my son had THREE bites of a HOT DOG!!!! This kid who eats basically the same thing EVERYDAY tried something new!? I was giving part of one to my niece becomes she LOVES them. Then, I just nonchalantly asked Ethan if he wanted a hot dog too, and he said YES! After I picked myself up off the floor, I gave him part of one as well. I encouraged him to eat it like his cousin, dipping it in ketchup & eating it like a french fry or chicken nugget. AND HE DID!!!!! OK, so he only licked off the ketchup but he TOUCHED the "slimy" hot dog & didn't wig out! Then, I decided to make the hot dog more enticing and turned it into a rocket.

First, we had to fill up with gas (dip it in ketchup). Then, we blasted off after Ethan counted down. As I made a rocket sound, the hot dog went high up in the air. I asked Ethan where this hot dog rocket was going to land? As he looked at me with a smile on his face, I could tell he didn't know how to answer this new question. So, I told him that it was going to land in Ethan's mouth! He squealed with excitement as the rocket slowly headed for his mouth. As the hot dog landed in his mouth, I told him to take a big bite.....AND HE DID!!!!! AND HE ATE IT!!!!!!!

Ethan posing for me with the hot dog

Usually if he doesn't want to eat something, he will ask us if he can "PLEH".......which means spit it out. (It can also mean he needs to vomit....fyi.) But he ate it, and asked for MORE!?!?!? AWESOME!!!!!!!! We did this 3 more times, and each time his bite was bigger than the last one. Then, he moved onto his pretzels & then was done eating.

I am soooooooo excited! Yet another benefit of watching my sister's kids during the day! I keep telling her I don't do it for the money, although that is much needed & very helpful to our household. I do it for things like this. Ethan taking 3 bites of a hot dog is worth so much more than the money she pays me for babysitting her kiddos. He is getting more exposure to playing with other kiddos, to increased noise levels, to sharing his toys, to taking turns, to sharing mom's attention....all of the benefits that he would have if he had siblings. And this may not be a big deal to most people, but this is huge. Today, Ethan took yet more steps towards overcoming some of his sensory challenges. And that, my friends, is priceless.

Girls Only Weekend!

This past weekend, my mom, sister & I traveled to St. Louis to attend my cousin's baby shower. It's their first baby, and we were so excited to celebrate this time of their life with my cousin & our family. I have said before that I have two cousins who are more like sisters to me. This shower was for one of these cousins, but we were all there together. It was such a GREAT weekend spending time with all of my girls!!!!

The shower was on Saturday afternoon, and my WONDERFUL mother offered up an overnight stay in a hotel....with a pool, hot tub, and no responsibilities for a day & night.......um, YES PLEASE!!!!!!!!! I gotta tell you.....having a night away did me a WORLD of good! Apparently being a mom is a little overwhelming and stressful for me??? Who knew?!

We left early on Saturday morning, did some shopping at an outlet mall, went to the baby shower, checked into our hotel, grabbed some dinner & did some more shopping at the outlet mall with my aunt & 2 cousins. The next morning, my mom & I enjoyed the hot tub & pool (LOVE!) while my sister slept in.....of which is rare for her since she gets up at 4:45 every morning to work out! Then, we enjoyed a sit down meal at a restaurant....without having to cut up anyone's food! Finally, we did more shopping to finish up the outlet mall & then headed home Sunday afternoon. It was a FANTASTIC weekend for me, and sooooooo needed. THANKS GIRLS!

Me & my sister listening to the baby shower game instructions. This picture makes me laugh because we are so focused & have pretty much the same expression on our faces. PS....we rocked the diaper/dress the baby one handed game!!!

While I was gone on a girls only weekend, Corey was home with Ethan.....A BOYS ONLY HOUSE! Those two had a TON of fun doing guy stuff.....eating fast food, wrestling, playing video games, having a father/son sleepover in the big bed, and so much more. Ethan came down with the croup last week, so they didn't really leave the house. However, that didn't stop them from having a great time. And guess what happened while Mom was away......Ethan started telling Corey when he had to go to the bathroom! YAHOO!!!

Corey told me that Ethan is able to hold it about 2 to 2.5 hours, and then he would tell Corey when he needed to go to the bathroom.....both #1 and #2!!!!! We are so proud of him! Corey also continued to encourage independent behavior. So, now, Ethan WANTS to put on his own socks, open his own packages like fruit snacks & poptarts, and put on his own coat. These are all things that I have been encouraging but somehow "MAN" time with Daddy has caused him to WANT to do these things! So, now, it's not a battle when we ask him to do them. Daddy has magical powers!

Corey also discovered a new trick. I talked before about whenever we tell Ethan "no" that he thinks he is in trouble, and that causes his anxiety to rise & increases the chances of a meltdown. For instance, he will ask to "make it dark"...which means turn off the lights. When we tell him "no", he gets upset, and then asks us again....I guess he thinks we will change our minds. So, now instead of just repeating the word "no" during the repeated question, Corey started asking Ethan, "What did Daddy say? Did I say yes or no?" Ethan will say, "Daddy said no." Then, Corey will say, "Good job, Ethan. Daddy said no!" So, we are still saying "no", but it's in a way that is positive. Therefore, Ethan doesn't think he is in trouble. It's a little odd, I know, but it is working.....so we are doing it!

I think it does both Ethan and I so much good to spend time apart. As his mom, as well as his all day care-giver, I feel the weight of the child-rearing responsibility. This is very overwhelming for me. Taxi driver, chef, teacher, therapist, activities planner, playmate, and on & on. This is not unlike other mothers, but with the addition of Ethan's autism diagnosis, I feel the need to CONSTANTLY help him overcome the obstacles that he faces. I really do believe that if we work really hard right now, he will be better off the older he gets. But, obviously, Ethan & I need to RELAX a bit from this idea. It seems to be the best approach with him anyway! Once I back off from a concept, he soon comes around & has the desire to do it himself. So, I think this mom needs to chill out a bit!

So, thank you mom for the opportunity to get away & just be Jessica for a little bit. And, thank you to my husband for always encouraging me to take time for myself. Apparently, when I actually do it, we all benefit. Are you all getting this??? Obviously, I need to go shopping with my girl friends more often......you know......to help Ethan.

Meltdowns Explained

A couple of days ago, I focused on TRIGGERS. Now, let's talk about MELTDOWNS.

A meltdown is similar to a tantrum or fit.....they appear to be the same. However, they are different in many ways. Autism-Causes.com does a great job of listing some of the characteristics of the meltdown & how they are different from a tantrum. Here is what they had to say......

The meltdown is a common autistic characteristic feared and dreaded by both caregivers and autistics. Not to be confused with a temper tantrum. There are differences that are easy to spot if you are looking.

1. During a melt down, a child with autism does not look or care, if those around him are reacting to his behavior. A child having a tantrum will look to see if their behavior is getting a reaction.

2. A child in the middle of a meltdown does not consider their own or others safety. A child in the middle of a tantrum takes care to be sure they won't get hurt.

3. A child in the meltdown mode has no interest or involvement in the social situation. A child who throws a tantrum will use the social situation to their benefit.

4. Meltdowns seem to move along under their own power and wind down slowly. With a tantrum, it will end suddenly when the situation is resolved.

5. A meltdown gives the feeling that no one is in control. A tantrum will give you the feeling that the child is in control, although they are pretending they are not.

6. The meltdown usually begins when a specific want has not been permitted and after a point, nothing can satisfy the child until the meltdown has run its course. A tantrum is thrown to achieve a specific goal and once the goal is met, things return to normal.

To be honest, it IS very difficult to distinguish between Ethan throwing a fit and having a meltdown. We have worked so much with Ethan on controlling his anxiety & feeling loss of control that his meltdowns are not nearly as bad as they had been at one time. So, they are looking very similar to his temper tantrums. If Ethan looks like his bones have instantly disappeared...causing him to fall into a pool of weightless body on the floor, that's a meltdown. Stomping his feet at the same time, that's a fit. I have definitely mis-judged which is which several times.....which makes parenting Ethan a bit more challenging.....but I try to be as consistent as I can. I feel that if I'm loving but firm, I will be fine either way.......fingers crossed!

When a meltdown does occur, I have found that there is nothing one can to except to do all you can to keep them & others safe from harm. A lot of times that just means waiting it out.....and then use the teachable moment that occurs after it is finished. If you have ever experienced a meltdown or been around when a meltdown is occurring, you now know why focusing on PREVENTION of a meltdown scenario is so critical. For me, I do all I can ahead of time in order to prevent a meltdown from happening....no matter what others may think of me. 

A meltdown is a scary thing. When Ethan has a meltdown or I can see one coming on, I feel so helpless. I want to help him, but I can't. In fact, sometimes I have made it worse. When his anxiety is already escalating, and I get in his space to comfort him or start talking to explain things to him (causing more noise & confusion), this will push him over the edge. So, if I see it coming, I usually try & remove him from the situation in order to calm him down....this seems to be the best thing we have found to help Ethan. We also help Ethan by giving him lots of down time after social events like school, church, family gatherings, going out to eat, shopping, etc. He needs this time to "re-charge" his system, and prepare for the next thing such as family dinner, playing with cousins or friends, etc.

We have also really focused on Ethan learning & understanding independent coping skills. He can cover his ears when it's too loud for him.....and, yes, we had to teach him to do this.....prior to this, he would just meltdown. We have to teach him to "use his words".....and then give him the words to use. I remember thinking how funny it was for me to teach my son the phrase, "I don't want to, Mom.".....after asking him to do something he didn't want to do.....like take a bath or clean up his toys. But I needed to give him these words & prompt him to use them, otherwise it would be a meltdown from the transition. It was just difficult to teach him to express his feelings.....and then make him pick up his toys anyway! HA! We have puppets that we used to play this "game" with....and that helped with confusion as well. (PS...transitioning from one activity to another is a very common trigger. Giving lots of warnings or having a transitional support aid...like a timer or schedule...is very helpful.)

Ethan's meltdowns have definitely lessened since being in an early intervention program. Through speech therapy he is able to express how he is feeling more & more, through occupational therapy he is able to handle more & more environmental sensory stimulation, and through developmental play at his school he is able to understand this world more & more. But when the meltdowns happen.....and they will happen.....all I can do is keep him safe, stay consistent, and try to help Ethan through the issue. And when he is calm & has moved through the situation, I give myself short break. I need a moment to cry, to pray for strength & wisdom, to give myself distance & perspective, and.....to get another cup of coffee.

Triggers Explained

If you spend anytime reading this blog, you will hear these two words often.....TRIGGERS & MELTDOWNS. I would like to spend a few minutes today exploring TRIGGERS.

A trigger can be anything in one's environment that will cause an individual to feel anxiety, uneasiness, terror, or out of control...which leads to that person having a meltdown. It can be a change in one's environment, a change in routine, or something as small as the ticking of a clock or the smell of one's perfume. In fact, when I was in my last year of college, one of my professors told us that we may want to consider not wearing perfume when we were in the classroom. Not only could it bother kids' allergies, but it could trigger meltdowns. In fact, to this day, it is my habit to not wear perfume because of this.....but don't worry.....I still wear deodorant! HA!

Triggers vary greatly from person to person. There are some common triggers that we are aware of....such as change in environment or routine....but it is more beneficial if you know the person well enough to know their specific triggers. For instance, our Ethan DEFINITELY has triggers that we are aware of....and I'm sure some of which we are unaware.

Ethan's known triggers are.....

1. TV - We have to be very careful of what we watch on TV.....especially cartoons. In fact, over the last couple of weeks, we have "banned" Disney & PBS from our TV. Not because we don't like them, but the cartoons on these channels have a lot of characters falling, screaming, and pulling with grunting....all of these which cause Ethan to meltdown. What he prefers to watch? Commercials. His current favorites are Pizza Hut, Pep Boys, Menards, any fast food restaurant, and Fisher Price. We don't even watch kid movies unless we have his sound proofing headphones at the ready.

2. Loud noises - Kids yelling, the smoke detector, me hollering down the hallway to Corey, a hairdryer, vacuum, blender, etc......these are all triggers that Ethan has or has had in the past. He is doing much better with most of these. The trick is warning him that it is coming. We have been told that loud noises literally hurt his ears....because he has sensitive hearing. But, I also think it's partially because the noise seems to come from out of the blue. Through giving verbal warnings, these triggers have lessened. The trick is to know that the noise is coming.

3. Being told "no" - For a long time, I honestly thought when we told Ethan "NO", that he was throwing a fit instead of having a meltdown....so he would sit in time out. But recently, I realized it isn't being told "NO" that is the issue. The issue is that he thinks he is in trouble.....and this heightens his anxiety. This is something I realized this past week. He would ask to turn the lights out in the living room so he could see the headlights on his cars better. Usually, it was during the day, and I would say yes.....and the rest of us could still function with the daylight. However, one time he asked me, it was after the sun had gone down. Turning out the living room lights, would put us all in the dark, so I told him no. This caused Ethan to throw a fit.....or so I thought. When I was finally able to reason with him, I asked him why he was sad. He yelled, "We DO NOT turn out the lights." Then it dawned on me....this is the phrase that I use during our time out conversations.....example: "We do not hit our friends." Is he upset because he thinks he is in trouble? So I simply said, "You are not in trouble. I just want to keep the lights on so I can see." The crying stopped instantly. So, now when he asks for something, and the answer is no....and the meltdown comes....I have started saying, "You are not in trouble".....and he calms right down. It lessens his anxiety. I'm hoping, now that I know what the underlying issue is, that this trigger will eventually fade away.

4. Tone - This one is kinda tricky. There are certain songs that we can't listen to because some of the notes cause a meltdown. Now that Ethan is more verbal, he is able to tell us "a different song", and we know to skip that song because it bothers him. A popular song that has the tone in it is Happy Birthday. We only recently have been able to sing Happy Birthday because not only does the song bother him, but the clapping & cheering afterwards bothers him too. For his last 2 birthdays, we have had to sing this song fast & not cheer at the end. It still bothered him, but not enough to send him into meltdown mode....just a little nervous whining. In order to help Ethan become immune to this song, I randomly sing it when I light a candle in our home. Then, I let him blow it out......and then I re-light it. LOL. I know it seems silly, but he really likes blowing out the candle....which helps him endure the song/tone. And since it is such a random occurrence in our home, I'm hoping this will help him over time. Only time will tell, I guess.

I have been told that Ethan's triggers will change as he ages.....some will leave & new ones will appear. One of the funny things about being aware of Ethan's triggers.....which are mostly sound issues......I have found that I am becoming more annoyed at sounds. For example, this past summer, I was helping my sister work in her classroom (she is an elementary teacher). As we were walking through the gym, I could hear the hum of the lights overhead. I immediately wondered if it would bother Ethan. However, my sister, who has walked through the this gymnasium thousands of times, didn't seem to notice it at all. A couple of days later, Ethan joined us at the school for a couple of hours while we waited for Corey to come & get him. My sister wanted to show Ethan another teacher's room.....she thought he would enjoy the word wall.....which he did. But, we had to get to this other room by walking through the gym. I quietly watched as my sister took Ethan's hand and led him towards the gym. Sure enough, the moment Ethan got to the entrance of the gym, he stopped & put his hands over his ears.....he could hear it too. He was able to continue towards the classroom.....but covering his ears the whole time they were in the gym. Of course, this may have been different if there was a gym full of kids talking & playing.....he may not have heard it at all.....but who knows.

My point is that since I am constantly on guard for triggers, now I have developed a bit of super-sonic hearing myself! You would be amazed at the noises I am now aware of......I know where the heating/cooling fans are located in stores, I know which stores have automatic flushing in the bathrooms, my seating preference in a restaurant is away from the kitchen, and I am unable to think clearly if there is a lot of noise going on in my environment. In fact, my sister has asked me to walk through her classroom, and look for possible environment triggers?! What a great idea!!! Thanks to Ethan, I can now add to my resume.....Noise Detective Jessica is on the case! LOL!!!!

Yes, I am THAT Mom!

So, on the way home from taking the boys to school today, I was singing in the car with my niece. As I looked over at the car next to me at the stoplight, I soon realized that they were getting a good laugh at watching the crazy lady singing & doing the motions to Itsy Bitsy Spider. I just smiled at them.....and continued with the show! I don't care if people are amused by me because......

• Yes, I am that mom that makes car sounds with her grocery cart to calm my 3 year old son. 
• Yes, I am that mom that makes silly faces in order to get my son to look me in the eyes.
• Yes, I am that mom that makes up silly songs to help him learn. 
• Yes, I am that mom that gets over-the-top excited when my son says "thank you" without being prompted. 
• Yes, I am that mom that cries when she sees her son playing with other kids.
• Yes, I am that mom that colors the sun purple and the grass yellow in order to encourage my son to color.
• Yes, I am that mom that makes pancakes using cookie cutters so my son will eat them.
• Yes, I am that mom that dresses up in theme for holidays & special events.
• Yes, I am that mom that walks like different animals with my son so he can strengthen coordination.
• Yes, I am that mom that has a paint stained dining room table from lots of finger painting.
• Yes, I am that mom that will do WHATEVER silly thing necessary to help my child learn & grow.

So, go ahead world.....watch & laugh if you must! I'm not doing it for you or even for me.....I'm doing it for my kid! I am responsible for teaching & helping my son, and I believe that silliness is one of the best ways to do that. And soon enough these days will be gone, and he will be a teenager rolling his eyes at anything I do. But for now, I will be that mom that is singing at the top of her lungs with her child to a kid's CD. And now, it's time for me to dance with the Wiggles..........

A Look Back at 2011

Every New Year's Eve, I get a little emotional. Not because I am dreading my upcoming New Year's Resolution, but because I look back over the past year & remember the good & bad times. And this New Year's Day was no different.


January 2011 - We began Occupational Therapy.....and our world was completely transformed by learning & discovering Ethan's Sensory Diet. During this month, we also started with a new Speech Therapist, and we all began to understand a little better HOW to help Ethan to communicate....and not just repeat what we said.

Ethan, how old are you?

January 2011 - After eating breakfast

February 2011 - We continued to take Ethan to his bi-weekly developmental playgroup, occupational therapy & speech therapy. Ethan continued to make excellent progress, and we began focusing on self-help skills at home.

February 2011 - Me & Ethan brushing our teeth....ignore my messy bathroom!

March 2011 - Ethan was becoming more & more "verbal". He was expressing his needs in words & not just in gestures. We had also been using the "brushing" technique in OT for a couple of weeks, and saw significant changes in Ethan's behavior. We were becoming more convinced that Ethan had Sensory Processing Disorder. Maybe this was the only issue? And not autism? Still debating it in my mind at this point.

March 2011 - The night we discovered that Ethan loved my foot bath. The water, the bubbles, the vibration, the sound....all calming for him....so now it's OUR foot bath.

April 2011 - We were preparing for our trip to the Autism clinic. We were filling out paperwork, taking videos, lining up babysitting, taking time off work.....and praying for the correct diagnosis. Ethan continued his therapies. Although I tried to relax, this month was filled with nervous anxiety....waiting for the day of the clinic. Meanwhile, we discovered that Ethan not only loved cars.....but NASCAR as well! So this month, Ethan attended his first dirt-track race. I contacted the new owner, and he sent us tickets in order for Ethan to attend & see if it was something that he could handle. So, Corey, his dad & Ethan (all huge car enthusiasts) went to the race, and the only time Ethan had a hard time....was when the cars STOPPED racing! Maybe next year will be better?!

April 2011 - Easter morning

April 2011 - Ethan at Peoria Speedway Track

May 2011 - This was the big month of the year. On May 4th, Ethan was officially diagnosed with Autism. However, during our consultation with the Easter Seals staff, we were told to continue doing what we were already doing. By the date of his diagnosis, Ethan had already been participating in a developmental playgroup for 7 months, speech therapy for 5 months, and occupational therapy for 4 months. Additional resources were made available to us, now that we were an Easter Seals family, but the only thing they wanted us to add was feeding therapy. On the way home from the clinic, I was calling every additional resource that was provided as well as suitable to Ethan's needs. A consultation with a feeding therapist was scheduled, orientation to the Easter Seals resource room was lined up, and our names were on the next available Easter Seals New Family - Autism Diagnosis class. The waiting was over & now it was time to be even more proactive in helping Ethan.

May 2011 - A couple of days before the clinic, we took Ethan bowling with our church. I thought he would hate all the noise, but he LOVED it! Here is Corey bowling with Ethan. (I don't think Corey liked me taking his picture!)

June 2011 - Ethan's 3rd Birthday!!!! We were so excited for our little boy's birthday, but turning three also meant "aging out" of his Early Intervention program. We had to say good-bye to all of his wonderful & loved teachers, therapists & amazing coordinator. The people that I had grown so fond of....the people who helped Ethan through his first steps.....will FOREVER hold a special place in my heart. Without them, Ethan wouldn't have made the progress he did in just those 8 short months. It was hard work for all of us, and I am eternally thankful to these amazing people. But this was not the end of his therapy....just this program. During this month, we also met with the public school district in order for them to assess Ethan's skills & needs. During this session, the teachers thought that Ethan would be best suited in a "regular ed" classroom. Soon after meeting with Ethan, they realized that he is very intelligent, but he needs to hear/see typical social interactions. I was over the moon. This would not have been the outcome had it not been for all of Ethan's (and our) hard work. So, on Ethan's 3rd birthday, not only did we celebrate our child turning another year older, but we rejoiced at all of the progress he had made during the months of intense therapy.

June 2011 - Ethan's 3rd birthday

Ethan's 1st Movie - Cars 2. He had removed his headphones, but still had his weighted lap toy.

June - Ethan meeting his first NASCAR driver.....#33 Jeff Burton!

 
July 2011 - Since school didn't start for another month, Ethan & I decided to take a break & enjoy summer vacation. We got a pool pass, and as long as we stayed away from the pool's speakers (LOUD music!), Ethan loved it. Although he still can't swim, he loves playing in the water...and I love seeing him so happy. We enjoyed lots of typical summer activities, and also attempted to start potty training. We thought it was perfect timing. However, it didn't go very well, and I was tempted to call Easter Seals for some ABA therapy in order to help us help Ethan understand this multi-step self-help skill. After listening to advice from others, I decided to hold off, and just give Ethan time & space.

July 2011 - This was before we had sound proofing headphones, so Ethan would wear ear plugs to loud events....like the fireworks. We used to sit inside our city's stadium, but now that Ethan has such a hard time with the loudness, we sit outside in the park & watch them. Corey & Ethan are waiting for the show to start.

Ethan & Corey swimming. He LOVES the water!

August 2011 - Ethan's first day of pre-school! I was a nervous wreck...and with good reason. The first couple of days of drop-off, it was awful. It was a lot of commotion & noise as well as a new environment. Even though we had practiced our morning routine & even our morning drive....telling Ethan that was his school & school is so much fun, etc,etc....he was a pool of meltdowns for the first several days. Eventually it all worked out, but I did a lot of stress eating during that first week of school! HA! But Ethan loves going to school, and even though he doesn't say it with words, I can tell that he adores his teachers & therapists.

August 2011 - Here is Ethan ready for his first day of preschool

September 2011 -We celebrated a big victory this month of sitting through our town's annual festival's parade! A year ago, he couldn't do this, and it was a very hard day for our family...but THIS YEAR, it was the anniversary of Ethan's first steps in getting the help he needed. You can read all about it at Happy Anniversary Ethan! This month was also the Dr. Temple Grandin Conference that my mom, husband & I attended. Meeting & listening to her was so remarkable......and I couldn't help but think that Ethan may be able to help others someday as well. We were also very overwhelmed by the generosity of our amazing family & friends & strangers as Ethan and another child diagnosed with autism each received an iPad2. This tool has been so amazing & has helped in ways that nothing else has been able to do. I firmly believe that the iPad2 has helped advance Ethan's understanding of what he finds difficult to understand.....social interactions, communication, abstract thinking, etc. This thing is such a blessing, and we are so thankful to all who helped. We also personally received additional funding to purchase Ethan specific therapy items...such as his sound proofing headphones, his trampoline, and other calming aids. We are so blessed!

September 2011 - Ethan & I watching our town's parade! I was so happy to have this moment with Ethan!!!!

Corey & I with Dr. Temple Grandin....unbelievable! She is amazing!

Ethan's first time with his iPad2. He loves it!

October 2011 - Another big victory was this month.....Ethan's school's Halloween festivities. All of the holidays in 2011 were filled with memories from 2010.....hard memories. In 2010, Ethan had such a difficult time participating in the fun & activities. So, as the holidays of 2011 approached, we were nervous....very nervous. How would he handle it this year? Would all of his therapies over the past year have made a difference? However, as we tip-toed into the first holiday of Halloween, we soon realized that this year was going to be MUCH different than last year......MUCH better!!!!!!!!! YEAH!!!!!!!!!!!!!! You can read all about that at A Truly Happy Halloween.

October 2011 - Steak-n-Shake's youngest employee!

November 2011 - Ethan still attends school every day for 2 hours where he also participates in occupational therapy & speech therapy. It has been so nice for me because I get to be just mom....not mom & therapist & teacher. Although, if you know me at all, you know that those other roles aren't really gone from my job description. But I don't feel like I have to be everything all the time...I have excellent help from his school, and I'm so thankful for them. But when Ethan tells me that he wants to cut out the Christmas tree that he just colored, and I know that this is a goal he is working on at school......you better believe that I FLEW to the crafting closet to grab those scissors!!!!!!!!

November 2011 - Ethan & Grandma playing on Thanksgiving

December 2011 - This month was full of FUN!!!!! We took full advantage of Ethan's excitement of Christmas, and ran with it! We completely made up for the last couple of Christmases and enjoyed everything! The 25 Days of Christmas kept us on track, and helped us teach Ethan about giving...not just getting. He loved each activity, and I loved watching the joy on his face as he gave gifts to others. This month, he also FINALLY showed interest in potty training! And, I am pleased to say that it is going VERY well! He has even been dry for the last 2 mornings! AWESOME!!!!!
 

December 2011 - Ethan opening gifts on Christmas Eve

Last year at this time, I was looking over the memories of 2010.....and to be completely honest, I was overcome with sadness. 2010 was a very hard year, and I didn't have much hope for 2011. But NOW, as I look back over 2011, I am overcome with JOY! Ethan has come SOOOOO far this year! It has been hard & a lot of blood, sweat & tears, but I am able to see that the victories FAR outweigh the struggles. Last year, at this time, if Ethan wanted a drink, he would bring me his cup & push it in my hand. With some encouragement, guidance, therapy & one memorable 3 hour stand off.......Ethan now asks for a drink with his words.....while making eye contact. That little boy just came to me and said, "I want mommy to find the Little King on Cars 2 iPad, please."..........this is a boy who wasn't forming a sentence a year ago & was basically only repeating things we would say.

As I look at 2011, I am filled with love, joy, and smiles.....so different from last year. And, as I think about what 2012 holds for us, I am hopeful & encouraged. I envision swimming lessons, breaking the night-time pacifier, celebrating his 4th birthday, participating (hopefully) in the Easter Seals summer preschool program, the end of a school year, the start of another one, more & more speech patterns developing, more & more writing & reading, more & more self-help skills, and so much more. I am very hopeful when I think not only about 2011, but Ethan's future in general.

2011 has been filled with Learning to Live with Autism...with the emphasis on LEARNING. While I will never stop learning about autism & what that looks like in Ethan specifically, I think 2012 will have a different focus. I think it will be more focused on the LIVING now that Ethan is able to do more than he has ever been able to do. 2012......Here we come!!!!!!