Light It Up Blue - Car Transformation

One of the best things about this is how much Ethan LOVES this car!

April is Autism Awareness month, and TUESDAY, April 2nd, 2012, is Autism Speaks Light It Up Blue. This is a specific day dediated to cheering for those who have austism! All you do is change your outdoor light to a blue light bulb & keep it lit with the blue glow all evening long! In fact, THE HOME DEPOT sells specific Light It Up Blue light bulbs each year!!!

Last year was our first year to celebreate this day as a family living with autism, and we have been excited for this year's day as well! I, personally, was excited to use my new Autism Speaks cookie cutter & hang up some blue outdoor Christmas lights that my friend gave me.

Oh.....but this is nothing compared to what my husband had in mind.

Corey's creative juices have been brewing since before Thanksgiving...when he discovered a new car product. Are you ready to see what he has done???

This is Corey's car before he started his Light It Up Blue project.

This is the car when Corey and his friend Matt started "lighting it up blue."

Here is the car painted blue.

And here is the finished car design. Corey made & placed 88 decals of puzzle pieces to put on the car. This represents the 1 in 88  children affected by autism.

The car was named Sublueru by Corey's friend, Matt.
Special thanks for discounts/donations by A Warehouse Full and DipYourCar.com.

 

Corey also took a picture of Ethan's hand and made a decal of it. Ethan actually picked the color he wanted his hand to be....green of course (his favorite). He even helped Corey apply the decal and text. He was so excited he was GIGGLING!

Corey put over 50 hours into this project. To say that he is proud of his son is a slight understatement :)

WILL YOU LIGHT IT UP BLUE WITH US??? YOU DON'T HAVE TO PAINT YOUR CAR....JUST CHANGE YOUR OUTDOOR LIGHT BULB!!!!

***UpDaTe - Corey's car was recently featured on our local news. To see his interview, click here!

Our First Road Trip....Just the Two of Us!

Our life with autism is filled with many firsts.....first conversation with a peer, first handshake with a "new"  person, first verbally expressed emotion, and so on.

Today, Ethan & I experienced our first road trip! Just the two of us!

My dad lives about 6 hours away from our home. Ethan's school was dismissed for this Thursday & Friday due to Spring Parent/Teacher Conferences. We have Ethan's IEP meeting next week, so we opted to not participate in this week's conferences. Plus, we just met with his teacher last week. So, the plan was for Corey, Ethan & me to all go to my Dad & Step-Mom's house this weekend....for a 4 day weekend.

However, Corey has 100 billion things to do, and just not enough time to do it all. One of the things he is working on is a very special Autism Speaks Light It Up Blue project....more on that to come.

Anyway, I was able to convince Corey to stay at home & "let" Ethan & I go by ourselves. My poor husband was a nervous wreck, but I promised to constantly check in with him while on the road.

Folks, this 6 hour road trip in our van was AWESOME!!! We had SO much fun together! We played the favorite game, I spy, & other made up games. I showed him mile markers & other road signs....of which he giggled every time a new one would pass us. He loved it! Of course, we had his iPad, DVD player & a toy bin full of fun "play in the car" activities. The time just flew by, and we had not one meltdown issue at all!

So, now Ethan & I are on vacation from our day-to-day routine. I love visiting my Dad's house because he lives in the country & it's so quiet and peaceful. People ask me what we are going to do, and I literally say, "nothing." It's a change of scenery, it's a break from the ordinary, it's getting away from things.....and I so need that right now.

Ethan & I have giggles all day. We are like a couple of kids at Disney World.....or in Ethan's case....a Nascar race. Today, Ethan helped my Dad start a fire in the fireplace. Tomorrow, we may walk around the acreage or paint with water colors. Ethan saw a Save-A-Lot & was excited about that....so we may shop there tomorrow. Who knows what we are going to do....but I love that part of vacation.

No plans, nowhere to be, no household to-do list hanging over my head, no laundry to fold or dishes to wash.....just country fresh air, hot coffee and stillness. Hum.....maybe I have a little autism in me after all.....;0)

Ethan crumpling newspaper & throwing it into the cold fireplace.

Papa Steve & Ethan breaking up sticks to put into fireplace.

Papa helping Ethan break up the thicker sticks.

Ethan & I driving in the van looking for our next exit. As soon as I got my camera out, he went right back to his iPad. But you can see he was having a lot of fun in his van....look at the sticker filled window!

Monday, Monday.....

It's been a typical Monday around here today. Ethan wanted no part of any self dressing today which messed up our morning routine resulting in Ethan not having a packed lunch for school and me having fresh out of the shower hair. At least I got my shower & teeth brushed! We are all thankful for that!!!

After I dropped Ethan off at Easter Seals, I went to get coffee with Laura, who does the marketing for our area Easter Seals. In April, Ethan's ITAP program will be featured in the newspaper, and they have asked our family to participate as the "face" for this particular article. It was a very pleasant couple of hours, visiting & retelling about Ethan.....of which I could do all day! I am very excited to help Easter Seals promote this ITAP program since it has helped our family so much.

After Ethan was done with his morning preschool at Easter Seals, we drove through for lunch (since I hadn't made it that morning), and headed over to his afternoon preschool. He was showing no signs of distress, so I imagined that today's drop off would go smoothly.

Nope.....

As soon as I parked the car, he started. I opened the side door of our van, and he was already on the floorboards throwing a fit....not a meltdown....a fit. I guess I just am done being Mrs. Nice Mom when it comes to this daily situation. I just told him that I was going to school, and I walked away from him. I didn't offer any transition toy, no calming words, no bartering....I just walked away & left his door open. I was about 4 yards away from the van when I hear, "Mommy! Mommy! Mommy!" He was panicking.....but coming.

He stayed about 4 yards behind me the entire time....and I kept glancing back at him. He kept his head down and was walking very slowly....but he was walking into school. YEAH! The last 2 days of school, I walked him to class & even stayed with him through lunch which is the first thing they do after hanging up bookbags & coats. Today, I wanted to see if I could just walk him to class. I did just that...and he was fine. No crying.

I just don't get why he is so determined to make that transition so tough, but I feel like the adults in his life are doing all we can & know to do for him. And if he still continues to have a difficult time, well......so be it, I guess.

Hopefully, the rest of the week goes a little smoother with getting him to school. As Scarlett O'Hara says, "After all, tomorrow is another day!"

School Stress Solved....We Hope!

Last summer, we place Ethan in Easter Seals autism preschool program, Intensive Therapy Autism Program or ITAP. We did this in order for Ethan to continue his progress that he had made through our school districtr's preschool program. He had made great strides...especially in his social skills....and we didn't want him to "lose" those things he had learned. Plus this program would include therapies that he desperately needs. It was perfect for us.

We were planning only doing the ITAP program for the summer, but we discovered that we could do it alongside of his existing district preschool program! We were thrilled! So, this year, Ethan has been going to ITAP for 3 hours, 2 mornings a week and attending his general education preschool every afternoon for 3 hours. Well folks, from the very beginning of this school year, Ethan has been fighting against this new schedule. At first we thought it was just due to his digestion issues. Well, that lasted for about 3-4 months before we discovered the issue & could help Ethan feel better. I assumed that once that subsided, his fits regarding going to school would stop. It didn't.

After Christmas, Ethan seemed to be even more agitated, and his teachers reported an increase in physical aggression towards his peers in the classroom. I asked the therapists at his ITAP program, and they too had noticed this change. We began looking into helping Ethan express his emotions in a more acceptable way by focusing on understanding his emotions. He can match an expression with a face, no problem. But actually knowing what that emotion feels like in his body.....there was the missing link. And that is a difficult thing to understand. Especially for Ethan who thinks that saying he feels anything other than "happy" is "wrong."

The other day, Ethan was frustrated with his fine motor skills. He became so frustrated that he threw whatever it was that he was playing with. Instead of getting upset about his reaction, I sat down next to him & told him that he was FEELING frustration. I pointed to the emotion card picture and repeated what he was feeling. "Ethan, you are feeling frustrated because putting the card back in the box is a little tricky. It's okay to feel frustrated. When you feel frustrated, use your words & tell me that you feel frustrated." This is how I have been instructed to help Ethan understand his emotions. A funny story...Ethan was in the bathroom taking a bath. I was in the living room picking up toys, and Ethan called for me to come & "watch him play." I told him that I was cleaning the living room and would be there soon. Pretty soon, we heard splashing from the bathroom & Ethan yelled, "Mommy! The face I am feeling is mad!"  Hard to ignore the splashing  behavior, but I was so excited that he recognized the feeling & verbalized it! I praised him with my excited voice from the living room....but I still didn't go in the bathroom. I didn't want him to think splashing equals mommy comes immediately.

So, this area has been going well. We have been using social stories about personal space, and ITAP has been working with him on what to do when you feel mad/sad/upet/etc. We even have given Ethan's preschool a copy of these materials to use at school as well. However, Ethan's willingness to go to school has still been decreasing. From the moment it's time to go to school to the time he walks into school, it is all out meltdown city. I have tried everything....an expected routine before school time, transition toys, positive & negative consequences, and even bribed him with fast food (his favorite). Somethings would work for a couple of days, and then back to war. I have taken him to the car literally kicking & screaming while I carry him...and this kid is 52 pounds! One particular day a couple of weeks ago, Ethan was so upset that he began banging his head against his car window & biting himself. I pulled into the parking lot of school, carried him inside, and he reluctantly went with his peers. I came back to the van, and guess what happened.....yep.....I lost it.

The next day as we started to begin to get ready for school, he started up again. Folks, I just didn't have it in me anymore. I deemed ourselves a "Snow Day" since several schools in our area were closing for bad weather. I just needed a break from war. He had worn me down, and I was waving the white flag in defeat. Everything is a battle with him....eating, sleeping, self help skills.....and I was ready to pull him out from school. At that point, I just didn't think it was worth the fight nor did I think I had any fight left in me.

I kept Ethan home from school the rest of the week. We still attended ITAP and went to our church's playgroup in order to get in some socializing. That Saturday, he spent several hours at my sister's house with her 2 kids, and she reported no aggressive behavior whatsoever. Maybe the break was doing Ethan some good as well. Maybe I should pull him out of preschool?

Well, after a few days of "recovery," I came back to my senses. Pulling Ethan from preschool would not solve any issue he was having....it would just be running away & Ethan needs to learn to work through things....not be put in a bubble...no matter how much I would love that protection. Ethan is able to handle this situation, and I needed to take my big girl pill and face it too.

This past Thursday, Corey & I had a meeting with his principal, his classroom teacher & his case worker. We found out that Ethan's behavior in the classroom had drastically improved in the last several weeks before our self given break from school. Seems as if working on emotions has been helping! So why the recent extreme fits??? We brainstormed several ideas, and it was a very wonderful meeting. We think maybe the transition from playing at home to coming to school is hard on him.....as transitions are usually difficult for him. Since a transition toy did not help Ethan, I am now the transition toy. :0) I will be walking Ethan to his classroom door, bypassing the students lining up at the door. And if I need to stay & eat lunch with him, I will do that too. And the last 2 days, I have done so. And it seems to be helping a lot.

Ethan is not the only one learning & progressing. I have learned a lot this school year, too. I'm so thankful for Ethan's team to be helping him but helping me learn as well. Would I handle this situation differently in the future? Probably. Did I learn a lot during this time? Absolutely. We all want the best for Ethan & want him to have a positive learning experience, and we are sooooo blessed to have these particular teachers & therapists in our lives. We all know that bad days will occur....maybe even bad weeks. But having a group of people that are flexible & understanding makes things so much easier.

A Blessed Week - Wednesday Through Saturday

Well, Wednesday I came down with the flu....even though I had my preventative flu shot! ARG! So most of Wednesday entailed me sleeping, getting sick, and trying my best to answer Corey's questions regarding Ethan's daily schedule.

By Thursday, I was feeling better but not yet recovered. Corey had quarentined me to our bedroom, and he was fast & furious with the Lysol & bleach in our home. (I think I should get sick more often!) But I was more awake than the previous day, and I was able to listen to the 2 men in my lives talking to each other throughout the day. It was the sweetest sound in the world. My two guys talking in typical conversation. I heard them laughing, playing, talking, and bonding....it was the best.

Friday, I was feeling my strength return, and Corey was able to go back to work. But guess who was sick with the flu now? Ethan. He woke up vomiting, and he continued to be sick all day....even though he would tell you that he was healthy & not sick. :0) Because he was sick, he actually took a nap that day. It was very late in the day, and we didn't even realize that he was sleeping. He had covered himself completely with a blanket on the couch, but he does that a lot in order to self calm. But we soon realized that he wasn't moving or making any noise. When I pulled back the blanket, he was sound asleep on our couch. I can count on one hand how often that happens.

You can probably guess what our night was like...since Ethan took a late nap, he was up late at night. Since my sleep schedule was off as well, Ethan & I stayed up late while Corey went to bed. Poor guy...he had been the sole caretaker for 2 days and was trying to stay on top of work stuff at the same time. This man needed his sleep!!!!

But a magical thing happened at 11:30pm on Friday night. Ethan & I were snuggling on the couch watching Top Gear (Ethan's choice), and he asked to play "The Favorite Game." This is a game that was created when Corey & I were dating. On many of our dates, Corey's younger brother would come with us. He & Corey were very close, and dating Corey usually meant taking Curtis with us. I joke with him that he is really our first child. He was around 8 years old when we got married, and he was our Junior Best Man. I love that kid. Anyway, on our dates, I started asking Corey what his favorite things were as part of trying to get to know him better. But Curtis was also part of this game, and we got to know him better as well too! It just asking a series of "What is your favorite______?" Color, snack, cartoon, flower, board game, etc. Well, this game has become a regular game with me & any kiddos that I have taught or babysat. And now, my own child loves this game. So, at 11:30pm on Friday night while snuggling & watching Top Gear, Ethan asked to play this game.

What happened has been seared in my memory for all time. I began asking Ethan questions which typically result in Ethan giving me one word answers.....which is a miracle in itself, to be honest. But on this evening, Ethan began to expand on his answers. For instance, I asked him what his favorite thing thing was to play in the Gross Motor Room at preschool. He told me it was playing house with 2 other friends.....an answer I had heard before. But then he said, Friend A is the Daddy, Friend B is the kid, and I am the mommy! (Many things ran through my head as he told me this...including why are you the mommy?!?! But also excited that he playing with other kids & PRETEND playing with others!...so it's fine that he is the mommy.) He told me many other things in more detail than I had ever heard before! He was telling me how things made him feel, how he liked some things & not others, more details about his school days....it was SUCH a blessing!!!!

I think we talked for an hour on the couch before both of our eyes began to feel heavy. It was the most that I had ever talked with Ethan. It actually felt like a real, genuine conversation. It was the first time that I saw Ethan as a boy....and not a preschooler. He has grown up in so many ways this year, and this conversation helped me see him for who he is....a great kid! For a brief moment in time, the autism fog was lifted off of him, and I got to see the boy underneath this covering. The person inside. I wished that moment would have lasted for hours, but I will take what we can get.

This glimmer of hope, this pause in his autism, this rare opening up....it has been permanently cemented into my memory & heart. As I went to bed that night, still exhausted from the last 3 days, I cried myself to sleep. But not tears of sadness for once. These were tears of joy & thankfulness. I was so overcome with gratitude that all I could say as I talked with God that night was, "Thank you, thank you, thank you." I could say nothing else. But as much joy as I was feeling, I somehow think He was even more excited.....for more reasons than I realize.

A Blessed Week - Monday & Tuesday

As I mentioned earlier, last week was one that I will remember always. It started out really rough, but turned out to be one of the best weeks ever. To read about Sunday, click here.

Monday night, I hosted a Thirty-One Party fundraiser for our July Walk With Me Team for Easter Seals. It was a last minute idea, but my friends came in support even with the last minute notification! Several of my friends who couldn't make it placed online orders which helped us raise more money for our team! The fundraising it done in a bracket type fashion. For example, if your party spends $100- $300, you earn $15 for your charity. (NOTE: These are not actual figures, just an example to explain how it works.) Our party raised $55 for our team! It was so wonderful to have an evening with my friends, indulge in a little girl talk with coffee & dessert, and raise money for Easter Seals! I was overwhelmed by my friends charitable-ness....is that a word? THANKS to everyone who bought a cute bag & donated to charity at the same time!!!

Then, Tuesday came....and so did another NEPHEW!!!! I received a text that morning that our family was blessed with another baby boy! So, now I am a VERY PROUD aunt to 7 nephews & 2 nieces!!! I love that we have a large family, and Ethan has so many cousins!!! We are so blessed!!!

A Blessed Week - Sunday

Last week will be one of those weeks that I will remember forever. I can't wait to tell you why!

Sunday - This was an extremely hard day for Ethan. It seems to me that as Ethan gets older, the less often his meltdowns occur. However, when they happen, they are longer & harder. This last Sunday, Ethan had 3 meltdowns....one lasting 40 minutes. And once a meltdown begins, there is nothing to do but let it happen & keep him safe. It is so hard for us a parents to hear him crying, screaming, banging his body, hitting himself, and so on....and there is literally not a thing we can do until it's over. If we try, it usually makes things worse...it's similar to a seizure. It was a very difficult day.

The thing was that Ethan had signed up to participate in our church's Talented Treasures...an evening service dedicated to showcasing our church's children's talents. We were very excited to participate in this event because it was Ethan's first year to be old enough to showcase his talent. And we were SO excited to show him off!!!!! His ability to commit things to memory is outstanding! However, we quickly realized that this would not happen due to the day he was having....and I was very disappointed because he had worked to memorize The 23rd Psalm.

However, I am happy to report that Ethan DID participate!!!! Our children's pastor called me and asked for the link of Ethan reciting Psalm 23. She, along with our church's tech guy, worked it out so Ethan's video was part of the evening's service! I'm so glad that I thought to grab the camera & get that video! And, we are so blessed that our church family is so understanding and supportive! We were able to be a part of something special even though we didn't think it would happen!

A lot of times, I feel that autism has separated us from our church & it's many activities. We are unable to attend many functions due to loud noises, unfamiliar people, long amounts of sitting & being quiet, and that is just the environoment of church. That isn't bringing the factors of Ethan having a "good" or "bad" day. This fact is very difficult for me. I LOVE my church. Corey & I have always been very active & involved in our church. In fact, this is were we met! And knowing that going to church is so difficult for Ethan is just painful to me as his mommy. Church has always been a place of joy, love, and comfort! A place to worship God with other believers and feel His presence. To hear a sermon and be encouraged & uplifted!

But for Ethan, most of the services & activities are painful for him to endure. And that is hard for us to endure. We do our best to stretch Ethan so that one day he will be able to sit in a church service or participate in the church's activities. But, honestly, we miss more church than we would like. We have tried one of us going while the other stays home & switch off services. However, that is difficult on our soul as well. Sitting in church by myself just re-iterates how lonely being a parent of a special needs child can be, and seeing other children in church breaks my heart. I long for the day that we are in church like we once were.

But my church is so awesome & so supportive, and they are always going the extra mile to make sure that church is for EVERYONE. I love that! In fact, we have started a special needs ministry, and have taken steps that will hopefully help church be a warm & comforting place for all. And when our church reached out to us...wanting to include Ethan in the service via video......Corey & I were literally in tears. It brought a truely awful day to a wonderful end. We were so touched by this outreach, and I couldn't wait to tell you about it!!!