Light It Up Blue - April 2nd, 2012

This week, Ethan & I will be decorating my home with lots of green for the next holiday, St. Patrick's Day. But, soon after that, our house will be participating in Light It Up Blue! Check out the video below, and find out how you can help spread autism awareness by Lighting It Up Blue. And if you are a member of my family...be looking for your "blue" basket in the next couple of weeks....complete with a blue light bulb.

Playroom Project...Step Two Complete!

Here is what we accomplished this week on the basement...soon to be sensory playroom....

Here is how it looked at the beginning of the week. Last week, we removed the drop ceiling.

I had a day off this week, so I began tearing down paneling. I was pleasantly surprised to find Styrofoam insulation behind the walls. This was something we were going to buy & install, but now we don't need to! YEAH!

My mom came over one night, and Corey & I both worked on removing the paneling. This picture is a bit blurry, but my husband is pretending that he is about to break this board with his knee. Yea, I married a ninja.

And here is what it looks like now. The drop ceiling AND the paneling are now removed. I'm not really sure what the next step is going to be, but I'm thinking it will either be running new gas lines (for our donated fireplace....thanks Grandpa Wolfe!) or addressing some water damaged spots that we discovered. These are both projects that will involve my husband, so it may take some time to get to it. But we have done a TON in two weeks!!!! I'm so excited!!!!!

Reading

I have talked before about how Ethan is already reading at a 1st grade level....and how he taught himself. This is one of his "super powers." I can remember when I started working with Ethan on his letters. I pulled out my uppercase magnet letters, and Ethan immediately began to say the names of several of the letters. I was amazed. I couldn't believe how much he had learned from us reading books together as well as watching kids' shows like Super Why, Sesame Street & Mickey Mouse Clubhouse. In a couple of days, he knew all of the letters. Here is a quick video of Ethan doing his letters...days after I got these magnets out for play. This was taken in September 2010, so Ethan is 2 years & 3 months old. This is just before he was placed in the Early Intervention program, and his speech is still very "vowel" pronounced. We could understand his language, and he knew all of his letters & numbers 0-9....and he was barely talking before his 2nd birthday.

 A few weeks after this video, we were at my sister's house. I told her that Ethan knew all of his letters, so she got out a board game to play with Ethan. It was kind of like CandyLand, but with letters. When I saw the game, I realized that it was all lowercase. I told her that Ethan wouldn't know them because we had only been using uppercase letters. She decided to play it with him anyway. Pretty soon, she turned to me, and said, "Jessica, he knows all of the lowercase letters." Unbelievable! Months ago, he was barely speaking & now he knows all of his letters?! 

Then we started working on sounds. We borrowed the LeapFrog Fridge Phonics Magnetic Letter Set toy from my sister, and Ethan was hooked. He played with it over & over again. Pretty soon, he knew all of the letters' sounds, too. He couldn't get enough. Soon, he was counting to 100 by ones and tens. Then, in May 2011, we were heading to St. Louis for my cousin's wedding. We were driving through McDonalds, when we heard Ethan in the backseat saying, "Thank you. Thank you. Thank you." over & over again. It finally dawned on me that he was reading the exit sign that indeed read, "Thank you!"  On the way home from that same trip, we stopped at a gas station. My mom, who was riding with us, had gotten one of those Big Gulp fountain drinks. Ethan began to read the words on her cup. It was during that trip that we realized that Ethan could read. To this day, I am still amazed at the amount of words he can read. This past Christmas we were at his classroom's Christmas party. They had done a gingerbread theme. One of the centers was smelling all of the spices that go into the gingerbread recipe, and deciding which one was your favorite. Ethan blew our table away when he read every word on his paper...unreal. Here is the picture of Ethan's paper....

 This past weekend, we spent most of our time hanging out with my Dad & Stepmom at my sister's home. My 5 year old nephew has been getting into reading recently, and he has many short story books. Ethan picked up a pack of Easy Reader Clifford books...12 books in the whole box set. Ethan wanted to read them with me...and he read every single one of them. My husband quickly got out his camera phone to record some of our reading session. Ethan did need some help, as you will see, but this is the first time of seeing these books...and he can read them. Unbelievable.

 

 

These "super power" moments are what I try to stay focused on instead of what he is currently (or maybe never) unable to do. He has such a thirst for knowledge, and that is such a blessing. Someone once told me that Einstein couldn't tie his own shoes. Whether that is true or not, I don't know.....but I could see that. Ethan is so drawn to learning academic things, but has no interest or desire in learning how to put on his own shoes. And every time I try to teach him or ask him to try, it's a meltdown. Maybe I should tie some little books to his shoes?!?! Hum..........

The Special Mother

A couple of days ago, I was looking online for sensory ideas for our playroom project. I came across the cutest therapy room done by Rachel Brewer for her daughter, who has been diagnosed with Angelman Syndrome. I then began to read through her blog postings and found this poem. I was moved to tears. This is exactly the encouragement that I needed, and I wanted to pass it on to others.....

The Special Mother
by Erma Bombeck

 Did you ever wonder how mothers of disabled children were chosen?

Somehow I visualize God hovering over the earth selecting his instruments of propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"This one gets a daughter. The Patron saint will be Cecelia."
"This one gets twins. The Patron saint will be Matthew."
"This one gets a son. The Patron saint.....give her Gerard. She's used to profanity."
Finally, He passes a name to an angel and smiles. "Give her a disabled child."

The angel is curious. "Why this one God? She's so happy."
"Exactly," smiles God. "Could I give a disabled child to a mother who does not know laughter? That would be cruel!"
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of sorrow and despair. Once the shock and resentment wears off, she'll handle it. 

I watched her today, she has that feeling of self and independence that is so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."

"But Lord, I don't think she even believes in you"
God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness."
The angel gasps - "Selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally she won't survive. 

Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider any 'step' ordinary. When her child says "Momma" for the first time she will be present at a miracle and will know it. I will permit her to see clearly the things I see...ignorance, cruelty and prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side."

"And what about her Patron saint?" asks the angel, his pen poised in mid air.
God smiles "A mirror will suffice."

Socializing....It's Not Just Difficult On Ethan

This past weekend, we had a WONDERFUL surprise....my dad & step-mom came here for a visit! One of my nieces was having her 2nd birthday party, and we were so fortunate to spend the entire weekend with them. They live about 6 hours away from us, so whenever they come for a visit, we try to spend as much time with them as possible. It was a great weekend!!!

But, during this weekend, I realized something about myself. I have always known that Ethan would prefer not to be in social situations but instead play on his own. However, this weekend, I realized that watching Ethan among other kiddos is difficult on ME.

In our own home, Ethan seems like a pretty typical 3 year old. He is comfortable with his environment as well as Corey & me. We speak his language, his environment is tailored for his sensory issues, and his social skills seem adequate.....at home. As much as I would love for him to be in this protective bubble of home, I know that this won't help him in the long run. So, we stretch him & put him in social situations as much as he can handle. It is good for him to learn social skills, language development, and other things from his peers.

But, I would be lying if I said it wasn't hard for this mama to watch. In our home, sometimes I forget that he even has autism. But when we leave the comfort of our home, and venture out into the world....I am reminded of how unique Ethan really is......and that pain of a dream lost comes to me all over again. Yes, I try to look on the bright side, and remember Ethan's super powers.....and that usually helps. But when I see Ethan playing by himself among a group of interacting children.....it stings. When I am trying to explain why pushing isn't nice during a time-out session, and he is only repeating my words....it hurts. When the entire family sits down to dinner, and Ethan is crying because he has to sit at the table with the rest of us....it is painful. It's like I'm being reminded over & over again that Ethan has autism.....and that is difficult for this mama to endure.

Someone once said to me that in order to teach a typical neurological developing child a skill, you may have to teach them 100 times. In order for the child with autism to learn the same skill, you may have to teach them 1,000 times. And I completely believe that. But, it can't be my excuse to give up on him. Ethan may have difficulty learning social rules or sitting at the table for long periods or using his words, but that doesn't mean I don't teach him otherwise. We work on it. Over & over & over again. I believe that he will one day get it. He is already doing better today than he was yesterday. Today, he is sleeping through the night, he is using a fork & spoon, he is potty trained, his use of functional speech is getting better, he is understanding more & more social rules, and so much more! He is getting it a little bit at a time.

So, I will have my little cry sessions in the shower, pray to God to be with my little guy, write all my feelings out, and then I will take my big girl pill, pour a cup (or two) of coffee & face another day learning to live with autism. And even though it is hard for me to see Ethan in social situations, we will keep doing it....because it is beneficial for Ethan & his future. And that is the prize I keep my eye on....

Hockey Game

I have talked before about how 2011 was focused mostly on LEARNING to Live with Autism. But through intense therapy, Ethan has been doing amazing & has overcome so many of his challenges. Not that we have stopped learning or that we are without new challenges, but I am hoping that 2012 is focused more on LIVING with autism.

I will never forget Dr. Temple Grandin saying, "You gotta stretch 'em." Just because Ethan has difficulty in social situations doesn't give us an excuse for keeping him home 24/7. In order for social settings to be easier for Ethan, he needs to be exposed to new situations over & over again. Even if that means, we walk in & walk out of a new place.....it's a place to start.

Well, a couple of weekends ago, I attended my 2 nephews' hockey game. They are preschool age, and seeing these little ones playing ice hockey is just ADORABLE! I decided that I would go by myself the first time....to see what the environment was like & what Ethan may need to endure this very loud activity.

Then, this past weekend, we ALL went.....Corey (my husband), Ethan & myself all dressed in warm clothes & headed to the hockey game. I am happy to report that Ethan made it through the entire 45 minutes!!!! He had a great time....climbing & walking around the bleachers, putting his face up to the protective plexiglass, and even cheering for his cousins! Then, the crowd cheered.....and even though Ethan was wearing his sound-proofing headphones, he immediately looked at me as his eyes began to fill with tears. Uh-Oh.........

So, I said to him, "That is called cheering. Is cheering loud or quiet?"

"Loud!" Ethan said....still panicking.

I then said to him, "Yes, cheering is loud, & that's okay!"

Then, he repeated that back to me, and I reaffirmed his statement. I could feel & see his nerves calming....and then he resumed playing. Every time the crowd cheered after that, he would look at me & say, "Cheering is loud, and that's okay." And I would reinforce his statement & compliment his calm behavior....and he would move on to the next thing.

At about 30 minutes, he began to ask to "go for a walk", but I was trying to "stretch him"....so I began to pull out my tools...a slow-color changing snowman ornament that Ethan received for Christmas, a sucker, and eventually, my smart phone where he looked at my pictures. That last one was unintentional, but it worked...so I just went with it. Here is a video of Ethan at the game....
  

He is cheering, "Go Hunter Go! Go Owen Go!"

At the end, he says, "Now you can have the phone"....

and that's how he ended up playing with my smart phone.

After the hockey game, some of our family went to Culver's to get some dinner. Ethan was so excited because he loves to "go in" to restaurants (instead of driving thru...) He ordered his standard meal...chicken nuggets & french fries...and sat at the table with the rest of family. Eventually, though, he took his color-changing snowman, and retreated to under the table. Under the table is quieter & dimmer lighting, so this told me that he was about done. And sure enough, I asked him if he wanted to go play at his cousin's house....and he just kept saying, "No. Home? Home? Home? Home?....." So, we took him home.

But I think he did amazing!!! He didn't sleep at nap time (no surprise), and both of these events were very out of the ordinary & LOUD! So, I am one proud mama right now!!!!! Great job, Ethan!!!!!

Glowing Balloons

In order to keep things new & fun for Ethan, I have been trying to think of ways to use our glow sticks & our color changing glow cubes. A couple of nights ago, I put the glow cubes inside of some white balloons...and then blew up the balloons only slightly. It didn't work very well with color balloons...just white.

We used it as part of our bath, but they could easily be used with our black light activities. Ethan just kept holding the balloons & waiting for the next color....he really liked them. However, we have used our glow cubes for a couple of weeks now, and water has gotten inside them. I'm going to try to dry them out by putting them in rice, but we may have to get some new ones. Here is Ethan with one of the balloons....