Thursday, September 27, 2012

G.I. Referral & Gluten Free Diet


Today marks 5 weeks of Ethan having severely loose stools. It started at the same time as cold-like symptoms occurred, so I assumed it was all related. When we saw the doctor the first time, I mentioned this to her but it was more in the form of a list of other things going on with Ethan. However, everything else has cleared up....but this explosiveness remains. We have followed doctor's instructions, and eliminated milk products (we already do that anyway), removed juice from his diet (only a splash to his water to add flavoring), and started him on a pro-biotic. Yet, the diarrhea remains.

This poor kid is unable to make it to the bathroom many times, having accidents at school, and says his belly hurts. 5 weeks of this.....arg. We have been to the doctor 2 times during this time as well as calling weekly for updates & "what now?" We have collected stool samples & had them tested. Everything has come back fine.

Today, we just came home from the pediatrician's office, and they are now referring Ethan to a Gastro Intestinal Doctor. It won't be for a few weeks, but I'm already sick to my stomach over this news. On one hand I am glad that things are moving forward which, hopefully, means that relief is coming soon. But on the other hand.....I am soooo dreading these next steps. I'm already envisioning horrible invasive testing, a new doctor's office, new faces, and a whole lot of trying to keep Ethan from being anxious.....which also means trying to keep me calm so he doesn't feed off of my nerves. UGH!

In the meantime, the doctor suggested trying to switch over to a gluten free diet as well as watching his sugar intake. So....I guess I have a lot of homework to do. I just went to Kroger & bought pretty much anything that said gluten free on it. :0) If anyone has some helpful advice or tips regarding any of this, I would REALLY appreciate it! I just want my little guy to feel better!!! THANKS!!!

Here is what I got at my quick Kroger shopping trip. With a 4 year old in tow, it was hard for me to read labels or focus, but I guess this is a start.

Monday, September 24, 2012

United STATES of America

Ever since Ethan's unique interest in the 2012 Summer Olympics, I have been looking for flash cards or games to encourage his curiosity of the countries, their flags, and so on. A couple of weeks ago, I came across some USA flash cards at a dollar store. I bought them because it just seemed like something Ethan would enjoy. OH MY say that he is enjoying them is a HUGE understatement! HE LOVES THEM!!!! We have played with them almost everyday since we bought them! Even when my mom comes over for a visit, she knows that she will be asked to play two things.....Money & USA.

Well, this past weekend, Daddy was planning on being gone all Saturday, so I saw this as a great opportunity to invite my mom over in order for she & I to clean out/organize/re-arrange Ethan's bedroom. (More on that later) Well, when we got to the last step of decorating the walls, I remembered that I had a large map of the United States that was already laminated & hanging in the back of my closet. You see, Ethan's love of maps comes naturally.....I love them too. Well, I knew that we just HAD to put it in Ethan's room.

Originally, I was going to hang it over the shelf as artwork. But Ethan & my mom wanted it close to the ground....where Ethan could see it, study it, and play with it. Good call!!!

When I asked Ethan what his favorite part of his room was, he told me, "Massachusetts." LOL!

You may notice that there are smiley faces on some of the states. These are states that Corey & I have been to together. My goal is to visit all the states before our 50th wedding anniversary.

Along with his wall map, Ethan got this puzzle from us last Christmas. He has never shown any interest in this puzzle.....until now.

Each state is a puzzle piece, and underneath, there is an outline of the state and the capital. It's a Melissa and Doug toy that we got on Amazon.

This is what started it all...the USA flash cards.

On the front side is the state name & a map of it's location.

On the back, they list state facts. Ethan is already interested in each state's capital.

Last week, my sister learned of Ethan's love of the states. She showed us a website of many different games including lots of interactive state games....and of course....Ethan loves them! Here is a link to the website..... Ethan's favorite game is

ALL of these items are used to create many kinds of games. Some he plays alone, some with us, some we make up, some he makes up, but it can go on for hours of play. In fact, after we hung up the wall map, I no longer had help from my mom in fixing Ethan's room.....she was occupied by a little boy wanting to play USA over & over again in different ways....and all three of us had a GREAT time!

Tuesday, September 18, 2012

The Cars Are Back

I shouldn't have said it.

I jinxed it.

Last night, I said out loud that I haven't picked up toy cars in a couple of weeks.

Ethan has been playing in such a new & different way, and that has resulted in his 100s of matchbox cars sitting on the shelf. I have loved it! My house has become a bit messier, but it's not been covered in cars. It has been play food, puzzles, building blocks, flash cards, books, board games, and LOTS of his sensory play items. He hasn't even wanted to play computer!

But of course I jinxed it. :0)

Actually, I think he is playing with his cars because he is tired. We have been busy, busy, busy the last couple of days. Sunday, we got up earlier than normal & drove to St. Louis. Both of my cousins, that my sister & I are close to, now live in St. Louis, and we were going to be a part of a special day. One of my cousins was having her little baby dedicated to the Lord at their church, and my other cousin just moved to St. Louis & had a new place. It was a WONDERFUL day! Ethan even attended the church's kids program WILLINGLY!!!!! He came out of their kid's program wearing a party hat & carrying 2 pieces of with a yarn craft on it, and the other was a coloring/circle the write answer paper. He said he had a lot of fun.....and I was so impressed with him being able to do this independently! AWESOME!!!

Then, we went to my cousin's new house & had a cookout. Ethan was so much more interactive with my family than ever before!!! He was playing with his cousins, playing with the little baby, and talking with my extended family. At one point, he asked my cousin, "Cousin Grace, will you get Hunter's ball for him?" (It has gone over the fence.) It was CRAZY AWESOME!!!!

One the way home from St. Louis, he was soooooo tired, but of course he didn't sleep. We got home about 6:30pm, and he said to us, "Who is going to lay with me." Whoever puts Ethan to bed, lays with him until he falls asleep (usually Daddy), so he was saying he was ready for bed. So, Corey gave him a quick bath & put him in bed.

The next day was Monday, one of our busy days. Ethan woke up earlier than normal, and we began our day. First, he went  to Easter Seals (3 hours of therapy/play/work), and then we head straight over to his Early Intervention School (3 more hours of school/therapy/play/work).  Monday was a rough day. Ethan was so whiny/tired which results in everything being a battle.....brushing teeth, putting shoes on, buckling car seat, cleaning up toys, and so on. Every time I talked to Ethan, he would whine/cry at was brutal. However, once again, in his own way, he asked Daddy if he could go to bed earlier than normal. And once again, Corey gave him a fast bath & put him to bed.

This morning, Ethan woke up at his typical 7am time, and he is in MUCH better spirits. However, I can tell that he is still a bit tired because all he is playing with today are his cars. But, I guess we all need some down time when we are tired. And seeing him play with his cars in his patterned ways doesn't get to me like it has before because I know this is not all he is doing now. He is just tired.....mentally & physically. And I guess I am too because I am already on my 2nd cup of coffee and fighting the urge to reorganize my closets. Like mother, like son.

Friday, September 14, 2012

Ethan is Communicating! Now What?

I haven't written a post in awhile, and it's mostly due to not feeling well. My allergies have been going crazy the last couple of weeks. However, there is another reason. To be honest, I don't have much to talk about regarding living with autism. As I have mentioned before, Ethan has been doing so well, and a lot of our struggles & frustrations are disappearing....well.....maybe not disappearing but are manageable. So, the types of issues that we are dealing with in our household are pretty typical of raising a child......not much autism-related. Isn't that crazy awesome!?

If I were writing a book, I would feel like my book is at the end. However, I am feeling a new book coming.....almost like a "what now" concept. For example, we have spent the last 2 years diligently working with Ethan in every capacity in order to help him communicate. Well, now that he is communicating extremely well, we have new challenges. Now that he wants to play with us, the new challenge is how to play with a child with Ethan's mind. He is constantly wanting to learn, and my brain begins to wear after 2 SOLID hours of learning & absorbing what states are in the USA. Now that Ethan can verbalize what he needs, how can I give him what he needs when they are of a 4 year old.

A shift has taken place in our home as well as my focus as Ethan's mom. No longer am I reading & learning all I can from Ethan's therapists & teachers. No longer am I pouring over books about how to help Ethan overcome certain challenges. My new challenge is how to keep Ethan engaged since he is showing that he now CAN be engaged. I have to figure out how to play with this child who has never wanted me to play with him. I have to discover how to interact almost all day long with my child who has a brilliant mind. My next book would be called, "Learning to Parent a Genius" or "Raising Einstein" or something like that because that is how I feel.

The other morning, Ethan woke up at 6:20am.....pretty typical of him. And, as the norm, there is no slow wake up/cuddle on the couch/rubbing of the eyes. Once he's awake, he's ready for "input." From 6:20am to 8:36am, we played with every single board game in his closet. As I played these games with him, I was thinking back to times of frustration & heart ache as I TRIED & TRIED to get Ethan to play with me, and understand about turn-taking, game concept, and so on. And as we spent 2 hours playing board games, I was overjoyed that it was now an ENJOYABLE thing to do! He would tell me when my turn was, ask me what playing piece I wanted to be, and was excited when he had to miss a turn & I got to draw 2 cards. It was sheer joy for this mom.

But, as most of us would agree, playing board games for 2 hours is....well.....a bit boring! But my Ethan wasn't ready to stop. He wanted more & more & more. I got out all of our puzzles, and that satisfied his need for input while I could grab another cup of coffee. And I was already thinking of what I could play with him next that would satisfy his thirst for learning.

His brain facinates me. It never seems to take a break. I think it's why he doesn't sleep well and why he doesn't want to stop to eat.....he just needs, "More Input." (From the movie Short Circuit) So, to anyone who is reading this, you may see a shift in my topics. But it is still our journey & how we are learning to live with autism. And we are so blessed to be having this new challenge. So blessed.

Wednesday, September 5, 2012

Yes, No, Maybe So...

Whether it's due to him getting older, having additional therapy, or being the only child in our home (I have stopped watching my sister's kiddos) or the combination of these things, Ethan has been making huge progress over the last several months. HUGE! And while I have noticed these changes, I was curious to see if the family could tell any difference. All of my family members have pretty much said the same thing......"We can tell that he is talking more & interacting more with us. We can also tell that there is something different about him lately, but we can't tell you exactly what it is."

I am THRILLED to hear others say this about Ethan! I am with him more than anyone so if anyone is going to see differences, it would be me. However, for others to notice, that is even more amazing. Yet, I too, haven't been able to pin point a lot of his changes, so I have really tried to pay more attention....and I really noticed something today.

One of Ethan's challenges has been that he answers, "YES," to every question....even if he doesn't mean yes. One example was when a therapist was evaluating him, and she asked Ethan if there was an elephant in the room. He answered, "Yes." Then, she asked him if the elephant was standing on the table, and he answered, "Yes." To be clear......there wasn't an elephant anywhere in the room.

For us, we noticed it was almost like Ethan was AFRAID to say, "no" to something. So, we had to almost give him permission. We began wording our questions to him differently. Example: "Ethan, are you hot? Yes or No?" or "Ethan, are you hungry? Yes or No?"

Overtime, he has gotten better at actually telling us is real answer....but usually only when we give him options following a question. But I've noticed this is changing......for the better......

A couple weekends ago, we spent the day at my sister's house to celebrate my Dad's 60th birthday. When it was time for us to go, my brother-in-law asked Ethan if he had fun playing with his cousins. He didn't provide options for Ethan to pick from....just an open ended question. In the past, I would have been able to tell you what Ethan would have said......always, "YES." However, that night Ethan answered, "Yeah No." WHOA!!!! He actually said NO without being given "permission" to do so!!!! Then, my brother-in-law said, "Did you have fun playing with your oldest cousin?" And Ethan said, "Yes." Then, he asked, "Did you have fun playing with your youngest cousin?" And Ethan said, "No." The whole family laughed & was a very funny moment.

However, this caused me to start paying attention to his automated "Yes" responses. And I have noticed that it is less and less. Not only that, but Ethan has started answering questions with words that are NOT any choices we have given him. For instance, today on the way from Easter Seals to Preschool, I asked Ethan if he was "hot or cold." Two choices for him to pick. Guess what he said?! "I am just fine." I almost wrecked my car!!!!!!! LOL!!!!!!

And these are just a couple of stories of what our Ethan has been like over the last several months. His back & forth conversations are growing longer in length and are less scripted than previously. I have noticed that he is using 2 hands for tasks instead of just one.....something we have been working on for a long time. He is initiating conversations with us as well as others....including his peers! He is showing a desire to be more independent. His tolerance for loud noise is SO much better than ever before. He WANTS to play with me all day instead of asking, "Mommy to go (away)." Now, it's, "Mommy, will you play with me?"

And guess what MY automated response is to THAT question! YES!!!