Tuesday, November 29, 2011

"A" is going to Menards......

The week leading up to Thanksgiving, Ethan & I were both very sick. After each of us going to our doctors, we were both told that we had severe sinus infections....awesome. Needless to say, neither of us felt like doing much, so we did a lot of laying around the house & resting. This can cause Ethan to become very restless, so I was trying my best to keep our toys & games as fresh & exciting as one can when being sick.

One morning, I was laying on the couch....sick as could be......while Ethan began putting together his big ABC floor puzzle. As his norm, he took one piece at a time....in ABC order.....from one side of the living room to the other. As he was doing this, he would say the letter as well as the corresponding picture. This is a typical & recurring game at our house. So, in order to keep things fun & interesting, I began to ask Ethan questions about his letter puzzle pieces....which was risky because it interrupted his game. Sometimes doing this can be wonderful & he loves it....other times he will get very upset with me. This time.....I was lucky......

He would say, "A. A is for Alligator." As he started to move his piece to the other side of the room, I asked him, "Where is A going?" He stopped dead in his tracks, turned, looked at me, and then smiled. "MENARD'S!" he said while jumping once. So, I responded, "Menard's? What is he going to get at Menard's?" Again.....another smile......"A Menard's Bear!" (a toy my mom recently got for him). As we both laughed, Ethan placed the puzzle piece where he first intended for it to land. Then, he went to get "B". As he picked it up, he looked at me right away....ready to play this game with each letter. It was so fun, and Ethan's smile never faded. Eventually, as he does, I was worked out of the game, and he would say this, "Where is A going, Ethan? To Menard's! What's he gonna get, Ethan? A Menard's bear!" This game entertained Ethan all morning.....and I was able to still rest on the couch! YEA!

However, I did have to grab a pen & paper in order to write down all he was inventing. So.....here is where all of the letters went....and what they all bought or did.....all original Ethan....LOVE IT!

A - Menard's - Menard's bear
B - Kmart - Books
C - McDonalds - Chicken Nuggets & French Fries
D - Taco Bell - Taco
E - Walgreens - Diapers
F - Casey's - a Drink
G - Burger King - Chicken Nuggets & French Fries
H - Subway - Meatballs & Cheetos
I - All State - Lightening McQueen
J - His Cousin's School - To give his cousin a hug
K - Ethan's School - To play with castle, boat & circus
L - Home - To play with the barn
M - Verizon - To play with crayons
N - Big Lots - To get a cart & diapers

O - Z - These were generally repeats of the above

It was so cute! Ethan has always loved logos & commercials.....and I guess this was a great way for him to play with his letters & logos.....a match made in heaven! LOL!

Saturday, November 26, 2011

Day 7: Things I'm Thankful For - Autism Style

This is it! The last day of Things I'm Thankful For - Autism Style. And can you guess what the last one is????


I am so thankful that I am Ethan's mom. All of the emotions that have come & gone....from being told that I may never be a mother to being told that my only child has autism....it has all been overwhelming. And, it is very easy to look at the sad part of our story.

But.....then I look at that little boy that God has blessed me with......and the sadness instantly goes away. He is such a treasure from God, and I am so extremely blessed to not only know him....but to know him as his mom. He has taught me so much about how to love unconditionally.

He is joy. He is love. He is silly. He is funny. He is excited. He is smart. He is energy. He is curious. He is sweet. He is warm. He is unique. He is innocence. He is perfect.

I am often asked if I could take away Ethan's autism, would I do it? My answer is not at all. He is perfect just the way he is. God made Ethan just the way he wanted him to be, and I am very fortunate that God thought enough of me to select me as his mother......to bless me with this amazing opportunity to learn about my sweet little boy & his wonderfully, mysterious super power called autism.

Here is a video that I have never shared with anyone. This was recorded over a year ago. It is almost bedtime, and we are all in our jammies....and lookin' quite fabulous, I must say. However, this video best shows the bond & love that Ethan & I have with each other. This kid is my heart, and I love him so much. This world is a better place because Ethan is in it....and I am a better person because I know Ethan. Thank you, God, for my beautiful boy.

Thursday, November 24, 2011

Day 6: Things I'm Thankful For - Autism Style

Although Thanksgiving is over, I am still continuing my week long Things I'm Thankful For - Autism Style. Today I am SO thankful for the man that I am fortunate to call my husband, Corey.

I am thankful for Corey in many ways. However, this is specifically in learning how to live with autism. So, I will be only talking about ways that I am grateful to have Corey as my spouse regarding this topic.

This man is amazing. Not only is he tolerant in dealing with his crazy wife (me), but he has strength & patience that I do not have. Every day, this man leaves for work before any of us are even awake so he can be home by 3pm. Being priviledged to have a great job, Corey is able to adjust his 8 hours....and he has chosen to work from 6am-2:30pm. This puts him home by 3pm. He does this every day in order to be home as much as he can with Ethan and me. Now, I know a lot of guys who would choose to sleep in later & be gone from the home as late as possible in order to avoid the craziness of raising kids. But not this man. And I am so thankful for this sacrifice.

Not only does he come home as early as he can, but EVERY DAY Corey starts playing with Ethan as soon as he comes home. Ethan knows that the moment Daddy walks in the door....it's wrestle time! And I am so thankful for that because this is something that Ethan's senses need (see sensory diet) yet I am unable to provide. I am not able to flip him, lift him, spin with him, etc. as much as Corey is able to do. And, to be honest, I do not have that innate wrestling ability that boys seem to have from birth. And this wrestling fun goes on for at least 1/2 an hour....more times than not, though, it goes longer....more like an hour. This also gives me a chance to clean up the house from the day & get dinner started. And because of this wrestle time, Ethan is usually able to sit at dinner table for longer periods of time.

Our evenings usually involve Corey helping someone in someway.....this is his nature. Either working on someone's car, working on a vinyl project, fixing a computer problem, helping a family member.....the list goes on & on. And Corey ALWAYS tries to involve Ethan as much as possible. He will think nothing of pausing his mowing to come do sidewalk chalk with Ethan or taking Ethan with him to run car related errands or playing cars while printing vinyl in his office. Corey is the king of inventing new games out of random things as well.....and Ethan LOVES it. Usually I have to continue the play the next morning while Corey is at work. It warms my heart that they have such a deep bond. I mean, you should see Ethan light up whenever Corey comes home. It's the most heart stirring thing I have ever seen.

And EVERY NIGHT, we have our bedtime routine. This has helped Ethan go to sleep quicker & have less meltdowns at bedtime....because he knows what to expect. So, our nightly routine is that Daddy does bath while I clean up the toys. Then I read books & sing with Ethan while Corey takes out the trash. Then Corey comes back in to pray & do a final good night kiss. EVERY NIGHT.

Corey is also learning all he can about autism as well. In January, he will be returning to school. One of his goals is to learn how to create iPad apps in order to develop more of them......for free. Currently, he is learning all he can about social stories and the pattern that has best helped children with autism. He is also volunteering at our church not only on the Mosaic Ministries Advisory Panel (special needs ministry), but he is also on the Children's Safety Committee. He is participating in a Men's Bible Study at work in order to keep his faith strong. He, too, has reached out to others in the autism community and is finding new ways to help Ethan. He created a online fundraising opportunity for others to donate funds to not only buy Ethan an iPad, but another boy who has autism as well. They raised enough money to buy 2 iPads, 2 stylus pens, and 2 protective frames. And in October, when he learned about Light It Up Blue, he immediately went out & bought a bunch of blue light bulbs.....even though the event isn't until April. He has also been very proactive in utilizing the resources provided to us by Easter Seals.

Corey is also VERY in tune to me & when I need a break. He is constantly encouraging me to take a break in the evenings.....go for a walk, go take a long bath, go get a cup of coffee with a friend, etc. And when I am so overwhelmed that I can't see straight, he is right there to take the reigns from me. (I am a bit of a control freak, so this is not an easy task for him.) He helps me with laundry, cleaning, dishes (ugh), finances/budgeting, planning, getting out the door on time, etc.

I am so thankful that not only do I have a spouse that I adore, but I have a true partner when it comes to parenting Ethan. He loves that little boy as much as I do, and we are both committed to raising him together. The divorce rate among couples with special needs children has been reported between 80% & 90%. When Ethan was 6 months old, we had him dedicated to the Lord in a ceremony at our church. Then, when Ethan was diagnosed with autism this May, we privately both recommitted ourselves to raising Ethan no matter what we faced as a family. I am so thankful that God brought this man into my life.....Ethan & I are so lucky to be his wife & child. Ethan would not be where he is....would not have made the progress he has made.....without Corey.

Oh yeah....one more thing. I am also thankful that my husband would prefer to stay home & play with Ethan on Black Friday. This way, me & my girl friends can go shopping for some great deals!!!!!! LOVE YOU, COREY!!!!!!!

Day 5: Things I'm Thankful For - Autism Style

HAPPY THANKSGIVING!!!!!! Since it's the actual day of thanks, I figured it was only right that I share what I am most thankful for as I am learning to live with autism.....my faith in Jesus Christ.

I was always raised in church. Both of my parents are Christians, and my dad is even a pastor. So, I have been attending church ever since I was a baby. As most kids do, I prayed for Jesus to come into my heart almost every Sunday. But something happened to me when I was a young child that changed my faith-life forever. When I was in 2nd grade, my parents separated and then officially divorced when I was in 3rd grade. Since I was at a very impressionable age, I was very acute to how my parents would deal with this heartbreak....and both of them relied on their faith. This was a very monumental point in my life....seeing my parents endure such a difficult time, but never turning on their faith & both of them always relying on God. Then, when I was in 5th grade, my mom took me & my sister to a Carman concert. During the song, The Champion, God got a hold of my heart. I remember sitting down in my chair & crying. When my mom leaned down & asked me what was wrong, I told her that I didn't know. She said, " I think that God is speaking to you." As I silently shook my head yes, she prayed with me & that night I truly accepted God as Savior of my life. I will never forget that moment.

Years passed and I continued to be involved in church & learn more about this God that I now knew personally. The summer before my sophomore year in high school, I participated in a Nazarene traveling youth choir called Destiny. One concert, I remember having that same feeling...God was speaking to me again. I remember during that outdoor concert telling God that not only did I love him with all of my heart, but I wanted him to really be Lord of all of my life....every part.....my language, my activities, my attitude, etc. I wanted to be completely His.

God & I had a great relationship. He was a constant companion...guiding me & leading me through every decision. In January 1999, God brought a wonderful guy into my life. In August 2002, God blessed our marriage, and together as a couple we begin to pray for God to use us for his ministry. A year later, God blessed us with a tremendous opportunity to leave IL and travel to TN for a wonderful career move for Corey. We were so excited and continually felt God leading us down this path. However, a week after we had moved, things went terribly wrong. Things were happening to Corey at work that caused us to doubt why God had brought us there. A very long month later, Corey could take no more & resigned. When the owners of the company got word of the happenings, they sent us an apology letter along with reimbursement for moving expenses. Eventually, the owners came in, cleaned house & took care of the situation.....but it was too late for Corey. He could endure no more, and our faith had been shattered. Why had God so clearly brought us to this place? to this situation? to this mess? We both felt that God had left us. After years of us both loving our God, we both turned our backs to Him. If this is what following God's will was like, we wanted nothing to do with it. We were both mad & hurt.

Thankfully, we have a Christian family & friends who were praying for us when we couldn't. They invited us to Bible studies, church activities, Sunday school, and so on. We participated....begrudgingly.....because we wanted to keep our families happy. I remember during one session of my Ladies' Bible Study, the question was posed....."What role of God do you need him to be in your life?" Examples were: Father, Comforter, Rock, etc. My answer was easy.....Friend. I felt like my dearest & closest friend had betrayed me, and I needed him to be a true friend.....the friend I remembered growing up. On the way home from that session that night, the song, Praise You in This Storm, came on the radio. I just sat in my driveway, and cried. Cried out all the hurt, cried out all the pain, cried out in forgiveness....and that's when the healing began. It wasn't like the next day I was all better, but it was the first step. And over time, God was able to heal our hurt & restore our relationship with Him. I had always believed that even though we may not understand the situation, God always has a plan for us. It wasn't until years later that Corey and I realized why God had led us to that situation. Corey & I have led a very "easy-ish" life.....nothing ever all that traumatic had ever happened to either of us. Not only did it cause us to "grow up", but this situation brought Corey & I extremely close to each other. No one else in this world knows what we went through & how it felt....only the two of us. And when Corey & I talk about that time in our life, we both agree that we wouldn't change a thing. The benefits far outweigh the scars. The bond that was created between Corey & I will never fade. We endured a horrible thing together, turned our back on God together, and found our way back to God together.

Now, fast forward to the day Ethan was diagnosed with autism. Because of what we have experienced in the past, Corey & I knew that, no matter what, God has a master plan. And because of our past, we were able to handle this news better than if we hadn't endured that period of time. Do I ever ask "why?" Absolutely. Will I blame God for this & turn my back on Him? Never. Do I lean on him EVERY DAY for strength? Always. And now I even think that we went through such a difficult time in order to prepare us for learning to live with autism. That God....He is always a step ahead of us, isn't He!

So, on this Thanksgiving Day, I am very thankful for having a personal relationship with my Lord & Savior, Jesus Christ.

"I can do all things through Him who strengthens me." Philippians 4:13

"Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the LORD your God will be with you wherever you go.” Joshua 1:9

“For my thoughts are not your thoughts, neither are your ways my ways,” declares the LORD. “As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts." Isaiah 55:8-9

Wednesday, November 23, 2011

Day 4: Things I'm Thankful For - Autism Style

One of the most important parts of learning to live with autism is having a strong support system. And my family is extremely blessed to have a very large & very strong support system.

Although our little family is just the three of us, we are very fortunate to have a very large extended family. Living in our city alone, we have my mom, Corey's parents, all of our siblings & their families, a step-grandmother & her husband, and 3 out of 4 sets of Corey's aunts & uncles & their families....needless to say the birthday parties are quiet large! Most of my side of the family lives at least 2 hours away including my dad & step-mom, 2 cousins that are more like sisters, several aunt & uncles & their families, and both of our grandparents. Thank goodness for the internet!

ALL of our family is very encouraging & supportive. ALL of our family wants to have a relationship with Ethan and are continually wanting to learn more about how to make that possible. No one in our family has ever made Corey & I feel like we are bad parents due to Ethan's behavior or developmental delays. ALL of our family asks us questions about Ethan & are constantly encouraging us as Ethan's parents. ALL of our family genuinely loves Ethan, and wants to know how they can help us or him. Our siblings & their families always include Ethan in family activities. From Uncle Chris teaching him how to hit a baseball to Aunt Rachel always playing board games with him, this kid is surrounded by love. Not only from our siblings & their families, but our parents have been beyond amazing. For example, when I told our parents that we were able to attend a Dr. Temple Grandin conference, my mom immediately wanted to go too.....and Corey's parents offered to watch Ethan....which included Grandpa changing diapers.....which just doesn't happen. This is the kind of support our parents & family are giving us......they too are being stretched out of their comfort zone in order to better understand autism so they can better understand Ethan & have a relationship with him. Even his 8 cousins who are 10 years old or younger will play a game with Ethan over & over again. Through this repeated play, they are connecting with Ethan.....and whether they realize it or not......they are gently pulling Ethan out of his world & into ours. We are truly blessed to have such an amazing family that encourages & supports our little family.

We are also extremely thankful to have amazing friends that support us as well. I have read about families that have been excluded from activities because their child has autism & their behavior is unwelcome. Thankfully, we have not yet experienced this heartbreak. Our friends are very aware of Ethan & his quirks, but always include us in festivities & events. ALL of our friends are very encouraging....through emails, cards, hugs, and....the most important to me....loving & accepting Ethan as he is. And my girl friends are so amazing at letting me share.....sometimes obsessively so....all about Ethan & what we are dealing with.....good and bad. This support is great, not only as a mother of a child with autism, but as a mother of one child. All of this is new to me....the parenting part as well as the autism part. Some times I discover that Ethan's behavior is very typical and other times they provide excellent suggestions & tips. We are so blessed to have A-M-A-Z-I-N-G friends.

I will never forget the day that Ethan was officially diagnosed with autism. All day long I had been texting family & friends who were praying & waiting alongside with us. On the way home from the clinic, I texted everyone the results. And overwhelmingly our family & friends said this......"It doesn't matter that Ethan has this diagnosis. He is still Ethan, and we love him....now & always." Now how lucky are we to have so many people like this in our lives!? I really think we are the most fortunate people in the world to know love like this.....and how awesome for Ethan to know this love....not only from his parents but from his family & friends. And without these wonderful people in our lives, Ethan wouldn't have made the progress that he has made. Thank you to all of you. We are soooooo blessed to call you our family & friends.

Tuesday, November 22, 2011

Day 3: Things I'm Thankful For - Autism Style

On the third day of this countdown, I am extremely thankful for all of our support aids! And, yes, I did say OUR support aids.....they help Mommy & Daddy too!

1. Technology - We are so blessed to live in a time where we have the kind of technology that we have. Being able to reach across the world, and connect with other families learning to live with autism has been so amazing. Our family has learned so much from other families that have either been where we are or who are going through it as well. And being able to write this blog has been a sanity-saver. I am able to keep records, recall progress, share victories/frustrations, connect with other families, and share information about autism. Also, the technology "toys" that Ethan has access to is so awesome. He loves to play computer games. However, from my point-of-view, he isn't playing......he is learning. PBS & Sesame Street's online games are his favorite, and these are teaching him how to read, how to categorize, and even modeling the art of conversation. Ethan has also been blessed to receive an iPad. This has been an life-changing tool for our family. The social stories alone have helped Ethan in high anxiety situations such as going to the doctor. This has also been helping him with his handwriting, understanding emotions, as well as his speech. We do, however, limit Ethan's time on these electronics. Ethan could easily spend hours playing with them & withdraw back into his world. If he has spent a significant time playing computer games or watching TV, it is more difficult to communicate with him....so we limit his time for both. It has become a treat or reward, and I am so thankful for this extra support in his development.

2. Sensory Aids - From difficulty sleeping & eating to sensory overload, we use A LOT of sensory therapy aids around here. I am so thankful for all of the families that have gone through this before us and have been able to share their knowledge with us. I am also thankful for Ethan's Occupational Therapies for teaching us what specifically helps Ethan in certain situations. Both of these have, again, been life changers for us.

3. Conferences - From Easter Seals to Dr. Temple Grandin, there is a wide variety of information available to those who are interested in learning more about autism. And Corey & I are very blessed to be able to take advantage of as many of  them as we can. Recently, I was even able to participate in an on-line conference specifically about ministering to those with autism & other "hidden" disabilities. It was wonderful!

4. Coffee - Yes, coffee is a support aid.......to mommy! There are times when I need a "time-out".....a break from the craziness of the day.....and coffee is always there. As soon as I take a drink of that warm fresh cup of coffee, I am immediately soothed, comforted & calmed. Some days require only my morning cup, and other require a whole pot. So, thank you coffee pot, for keeping me calm & sane during those crazy days!

Monday, November 21, 2011

Day 2: Things I'm Thankful For - Autism Style

Currently, I am listing the Things I'm Thankful For - Autism Style. On the 2nd day of Thanksgiving Week, I am thankful for Ethan's Early Intervention. This includes Child and Family Connections, Easter Seals, and Preschool Family Educational Center.

We started this journey with Ethan in October 2010.....when he was 2 years old. Although we didn't have a diagnosis yet, we knew that Ethan was showing signs of developmental delay. Through the suggestion of a friend, we contacted the Child & Family Connections agency, and began our journey. He joined a 2 day, 2 hour a week developmental playgroup where he blossomed. He also started speech therapy and, later, occupational therapy. We also put his name on the waiting list to be tested for autism at Easter Seals. During our short time with this early intervention agency, Ethan grew leaps & bounds........and I will never forget those people & what they did for our Ethan. I truly am eternally grateful.

In May of 2011, just one month shy of 3 years old, Ethan received his official diagnosis of "classic autism." We then became an Easter Seals family. The resources that have been made available to us are astounding. There is a "resource" room that acts similar to a library. Instead of buying expensive therapy toys & aids that may or may not work with Ethan, we can check them out from the resource room. It really is an amazing resource for families learning to live with autism. They also provide therapy, training, and support to the entire family....not just the person with autism. They are a wonderful organization, and we have learned so much from them. In the future, we plan on Ethan participating in their swim classes, summer ASD preschool program, and possibly help us with toilet training. We are so blessed to have these resources available to Ethan.

In June of 2011, Ethan "aged out".....meaning he was too old for the Child and Family Connections program.....so we were then handed over to the public school system. Currently, Ethan is enrolled in a two hour, everyday preschool program where he also receives occupational therapy & speech therapy. He is a part of a typical classroom which includes a teacher and a teacher's aid. Ethan LOVES school. Although Ethan is very advanced in the academic world, he is still very delayed in several areas.....mainly his social skills. Last week we sat down with Ethan's teachers & his speech therapist, and we reviewed his progress & goals. One of his goals is to "initiate conversation with others." While this is a great goal for us to have for Ethan to have, I made comment that this goal will probably still be on his IEP in high school. Social skills will be a life-long mystery for Ethan.....but we will constantly be there to help him learn. And, not to brag on my child, but his teacher's told us that....on the skills they tested him on (colors, shapes, numbers, etc.)....he not only meets the end of the year goals for the 3 year olds.......he meets the end of the year goals for the 4 year olds! What a smart kid we have!!!!! So, we are already beginning to see his strengths & his weaknesses.

I just think about the past year of our journey with Ethan's Early Intervention Program, and I am in awe. If Ethan hadn't been a part of these amazing programs, where would he be today?! More frustrated, more silent, more withdrawn......I just can't even begin to imagine. The progress he has made in only a year is astounding. I honestly am eternally grateful for all of the people that have come into Ethan & our lives in order to help us learn to live with autism. It's been an awesome journey.

Sunday, November 20, 2011

Things I'm Thankful For - Autism Style

During the weekend of Thanksgiving, I will be pretty busy....as most of us tend to be during the holidays. So, last week I wrote double-time, and I created Things I'm Thankful For - Autism Style. It's a tribute to the things that I am most thankful for specifically when it comes to living with autism. Some maybe fun & other things serious, but they are all honestly true.

The first thing I am thankful for is my van. I L-O-V-E my mini-van. This past summer, my sister & I talked about me taking care of her 2 kiddos while she was at work. This would include a lot of driving because her oldest is in all day preschool & my Ethan is in half-day preschool......at different schools. Plus, my last car wouldn't have been able to fit 3 car seats plus coats & book bags & snack/drinks. So....this last August we purchased a new-to-us minivan......and I adore it!

Because toting around 3 kiddos is not the easiest thing in the world, I rely a lot on my van. Her side doors will automatically open at the touch of a button on my key....LOVE! So, when the kids run past me going out the door in the morning, I simply push a button & the kids are already climbing in the van while I am closing the front door. It also helps when I'm running errands & need both of my hands for all the usual mom stuff.....holding kids hands, carrying purse/diaper bag/sacks of merchandise, etc. I can push the button & literally drop my load on the floor of the van....and then get things situated. On the inside of the van doors, there are also push buttons that allow the kids to push the buttons....if I choose to unlock this feature. The kids love taking turns pushing the button to close the doors....and it's one less thing for me to do with my already full hands. As the driver, I have the ability to open the side door of my choosing after parking the van. I love this because I can pick the safer side of the van to gather the kids....and they automatically know which side to exit.

We have gotten our morning school routine down pretty good, and the kids & I are like a well oiled machine. But if I didn't have this van, it would be 10 times harder for me.

Other things I love is that we have the stow & go option, so if we need extra space...I can do it myself & not wait for my husband to help me. I also love that each kid has their own space, their own cup holder, and their own air/heat vent. Initially, I wanted a van that had a DVD player installed overhead, but that would have increased the price of the van. Plus, we don't really let Ethan watch that much TV.....it makes him harder to communicate with because it increases his "withdrawn-ness." So, instead, we use a portable DVD player only for long trips. And the plug in for this is RIGHT beside Ethan's seat. It's a beautiful thing.

It also has a CD player. This means I am the kids personal DJ. On the way to the first school, the oldest get to pick the music. One the way to the second school, Ethan gets to pick the music. One the way home from the dropping the boys off at their schools, the youngest gets to pick the music. And, of course, they all like something different. Then we do the same, in reverse, when we pick the kids up from school. Basically, whomever school we are going to or leaving from gets to pick the music. And, honestly, I LOVE music.....so i don't mind being their DJ.....I would be doing it if I was alone anyway!

It also has........are you ready?.........a tape player! I was actually pretty excited about this! I went down to the basement & dug out the few tapes that I had managed to save. One of them was C&C Music Factory. And guess what??? Ethan LOVES the song Everybody Dance Now, and requests it often.....much to my joy & my husband's annoyance. HAHA!!!!!

So, today I am extremely thankful for my wonderful mini-van. I love her (yes, she is a her because she too can multitask), and she makes my day soooooooo much easier & a lot more fun!

Thursday, November 17, 2011


I have a friend who says that her kids have their own language, so she made up a name for it. She would call Ethan's language "Ethan-ese" (said like Japanese). Well, Ethan DEFINITELY has his own language. Because of his autism, he has difficulty with speech. So he has these canned phrases that he has latched on to....and some of them we have no idea where they came from.....but here are a few translations.

"Do you want a drink? Yes!" - This is the format that Ethan uses when he wants something. We are really working on trying to get him to instead say, "I want a drink, please." And if we ask him, "How do you ask?" he will re-ask in the correct way. But, currently, this is how he communicates his needs.

"You DO NOT screaming with me!" - This, sadly, also comes with hitting himself & tears. I don't know where this came from, but this is the format he uses when we tell him not to do something.....like screaming. Then, I tell him, "Don't hit Ethan" in a very "mommy is sad" tone, and he says, "You do not hitting with me!"......and continues to hit himself. This is a very frustrating one because of the hitting portion, but I'm hoping it's just a phase. We just remind him that he's not in trouble & that he is okay, and it usually follows with a hug from us. But it happens every time we tell him no or to not do something.

"I am tired of your incompetence!" - This one cracks me up.....sorry Daddy. He only uses this one with Corey! LOL! Whenever he is having trouble communicating with Corey or Corey is making him do something he doesn't want to do....like putting on shoes to go out the door......Ethan says this to Corey. This came from Mickey & the Three Mouseketeers....Queen Minnie says it to Captain Pete. And it is soooooo hard not to laugh! To hear a 3 year old using such a big word is so funny. AND the fact that he only says it to Corey makes it even more amusing to me! LOL!

"I don't want to get in any trouble, Chuck!" - He says this when other kids around him are getting in trouble or being put in time out. He is very upset, and this usually is a very anxiety filled statement. Again, I just remind him that he isn't in trouble, he is okay, & hugs. This comes from one of his books on his iPad.

"Oh, Goofy! Are you okay?" - This is what he says he falls down AND hurts himself. A common characteristic of kiddos with autism is that they don't seem to register pain. Ethan, taking after his mother, is a VERY clumsy child, so he is often tripping or running into things. However, rarely does he show sign of pain. So when their IS pain registering, this is what he says. Again, it's from Mickey & the Three Mouseketeers.

"I love that song!" - This one is already fading, but it is worth mentioning. This is what he says when he really likes something. If he is watching a cartoon that he really likes, he will say it. If he is playing a computer game that he really likes, he will say it. And one day, after changing his diaper, he stood up, gave me a hug, then looked at me & said it. Ethan will always say, "I love you too, Mom," after I say I love you to him. But NEVER has he out of the blue just told me he loved me......until that day when he looked at me & said, "I love that song." Tears instantly came to me. My son was telling me that he loved me in his own language. Well, a couple of nights ago, I said to Ethan, "I love you, Ethan!" and he said, "I love you too, Mommy....,,(pause)......and Daddy." This was another first, and not completely a canned response. Well, tears didn't come to Corey eyes.........but spread across his face was the biggest smile I have ever seen.

Over time, Ethan's canned phrases will fade away &or change to new ones. These are phrases that he has latched onto in order to try & communicate with us.....instead of having a meltdown. The difficult part is interpreting what he is trying to tell us.

However, Corey & I have noticed a HUGE improvement in Ethan's speech development.....especially since starting preschool.....but really over the last couple of weeks. Yesterday, instead of saying, "Do you want fruit snacks? Yes!" he said this, "I want fruit snacks in a bowl on your (my) lap, please." Once I picked myself up off the floor, I gave that kid all the fruit snacks he wanted! GO ETHAN!!!!

Tuesday, November 15, 2011

Ethan's 1st Church Service

Once a month, our church does a "Family Service" on Sunday nights. Ethan has always preferred to play in the nursery instead of being in "big church"......he usually won't even step foot in the sanctuary because he is afraid of it. Every time he has been in the sanctuary, it has been too loud or too overwhelming or too new. And we always take advantage of the nursery instead of trying to keep him calm & quiet during a church service. That time will come soon enough since he is getting close to the age limit for the nursery.

However, this past Sunday night, our Pastor asked my husband's side of the family to participate in an activity which would include not only Corey & I but Ethan as well. I told him we would try, but in the back of my mind I never thought it would happen. Ethan is just too terrified of the sanctuary. BOY WAS I WRONG!!!!

The whole gang got to church a little early in order to meet with Pastor & go over what he wanted us to do. Ethan walked right into the sanctuary as if he had done it 100 times.....no biggie. I was so thankful for this small miracle! Then he saw some of his cousins, and immediately left the comfort of my side in order to go play with them. He keep looking at me while he was creeping over to them, and I enthusiastically shook my head 'yes'. Ethan was so comfortable that he felt he could wander away from Corey & I?! AMAZING! Then, after we got our orders, the whole family moved up to the front 3 pews. Corey & I thought it would be best for Ethan if we stayed where we were....in the very last pew. However, Ethan followed the rest of the family, and went right on up to the front! And we followed....

He was Mr. Social! He was walking around the 3 pews of family, talking to everyone, playing with the kids....it was so awesome! Then the service started. Now, the family services are very different from a typical service. It is focused more on families.....thus focused more on kids......and it's not a very traditional service.  So Ethan didn't have to be super quiet, but he did have to sit down because it was still a church service. When we told him to come & sit by us, he kept saying, "Owen? Owen? Owen? Owen? Owen? Owen?" over & over again.....he wanted to sit by his cousin......LOVE!!!! The theme for the evening was "Let Your Light Shine," so they darkened the sanctuary & only lit the platform. Ethan immediately began to tense up, so we offered him his sound-softening headphones. He put them on just as they started a video clip on the screen, and Ethan said, "Oooooooo! Look! A movie!!!!" And the video was entirely a light bright whose picture was constantly moving to show a story. And Ethan has a light bright so he was very interested in this "movie." Then, they started the music portion. I felt myself prepare for the meltdown that was surely going to come....because this is why he doesn't like the sanctuary.....and no meltdown ever came! We sang about 4 songs, including This Little Light Of Mine.....to which he held up his finger & had the biggest smile ever! My heart just melted! Then, another video, and he enjoyed that too. So far, the whole service has mesmerized him.

Then our Children's Pastor when on stage for a "science experiment," and she invited all the kids to come up and join her. Before Corey & I could even look at each other to communicate how we should handle this with Ethan, Ethan was walking up to the platform with the rest of the kids.....no fear! SERIOUSLY!!??? WHO IS THIS KID???!!!!! Corey went up & sat in the front pew, but Ethan was on his own on the stage with the other kiddos. All the kids sat down around the demonstration table, but Ethan was ready to put on a show. Remember, the lights were down in the sanctuary, so.....as my friend pointed out.....the only people he could see in the audience were the first 3 pews.......which was his family. He was so excited & happy! He was talking about how much he loved the apples, counting the apples (they were actually lemons), jumping up & down, climbing on & off the alter....it was so amazing to see him without fear. After awhile, I went on stage to aid him in being a part of the group & listening to the demonstration. This was a new experience for Corey & I....we were prepared to handle anxiety-filled Ethan, but not ham-it-up on stage Ethan!!!! It was great!!!! Then, the Children's Pastor passed out glow sticks. She snapped one & handed it to Ethan. She was telling the kids to shake it after they snapped it in order for it to glow. Ethan says, in his non-inside voice, "Everybody shake 'em!!!" It was hilarious! Then, they turned the lights on the stage down, so we could see the glow sticks really glow. When that happened, Ethan says, "It is SO beautiful!" I was over the moon!!!

Then, they dismissed us back to our seats, and I took Ethan out for a diaper change. As we were in the bathroom, Ethan begins to sing......."This little light of mine, I'm gonna let it shine"........(pause for tears).................and I thought to myself how Ethan already is letting his light shine. I was so thankful when I heard the door open because it stopped me from bawling right then & there. I was just so happy for Ethan. Well, it was our Minister of Music, and she started singing along with Ethan. He got the biggest grin on his face. He thought that was so cool! As we made our way back inside the service, the lights were still off as our Youth Pastor was giving the sermon. He had a bunch of lights lit on stage include a large revolving multicolored light that was bouncing off the walls of the sanctuary. Ethan loved it. Then, it was time for our family's activity. It's a bit difficult to explain this,but I'm going to try. My husband's older brother is married to a friend of mine. Her family has been members of our church for years & years. Pastor brought HER grandpa up on the platform, lit the candle grandpa was holding & interviewed him. The point was that him shining his light made a difference in his family. Then, Pastor brought up the grandpa's kids.....all of whom attend church....and 3 out of the 4 attend our church. Grandpa lit his kids candles, and they lit their spouses candles. Now there are 5 family members on the platform. Pastor interviewed them. Then he brought up THEIR kids....one of which is my friend & sister-in-law. The pattern continued, and then it branched over to my husband's family.......Corey's mom & dad.....then Corey & I with his other siblings.....and then finally the great-grand kids....including Ethan. Ethan did amazing. He sat with our Children's Pastor while Corey & I were on stage, and he did very well when he was called to the stage. That was the last thing of the service....and Ethan did AMAZING! It was all Corey & I could talk about that night & the next day. It was such a blessing.

When Pastor asked my husband how being raised in a Christian home has effected how we want to raise Ethan, Corey got very choked up. We always knew that we would raise our kids in church. That's how he & I were both raised, and we both found Jesus at a very early age. And this is what we want for Ethan. So, we want to do what our parents did for us. But, with Ethan having autism, this has become a challenge. He can't participate in a lot of church activities due to his anxiety & sensory sensitivity. So, our biggest desire for Ethan has become even more of a challenge to teach & model. But, I continue to pray everyday for Ethan. I pray every day that he would come to know Jesus at an early age, and that he will love Him & serve Him every day of his life.....like Corey & I have. It has been life-changing for us, and we want Ethan to have this peace in Jesus as well. And I don't know what Ethan understands or what he will be able to understand in the future, but I do know that God has big plans for Ethan. And Ethan showed us all during that evening church service that he is already letting his light shine. He is such a gift.

Saturday, November 12, 2011

Autism Family Orientation Clinic

My goal for the next couple of postings it to type up all of my notes in my ever growing pile of papers. I need to clear it out & file some of the older things. So, today I will be noting what I learned from a Easter Seals clinic that my husband & I attended in July 2011. I'm a bit behind........

This one-day clinic was specifically designed for New Diagnosis Families. The class was divided into 5 parts: What is an Autism Spectrum Disorder? What causes Autism? What happens now? What can I do to help? and What can I expect for the future?

What Is Autism Spectrum Disorder?
*Autism is a complex, brain-based developmental disability that typically appears during the first 3 years of life.

*Impacts the typical development of the brain processes related to social interaction and communication skills.

*People with autism typically have difficulties with verbal and non-verbal communication, social interaction and leisure or play activities.

*Autism is a life-long disability.

*Currently, there are a lot of studies being done on the brain of people with autism. Some early results are showing that sizes of parts of the brain are different than the average brain.

*High-functioning means the person has a high IQ.....not that they can cope well.

*There are several autism diagnosis: Classic Autism (this is Ethan's category), Asperger's Disorder, Pervasive Developmental Disorder. Easter Seals told us that in the year 2014, there will no longer be categories. All will receive a Autism Spectrum Disorder.....no longer separate categories.

*Sensory sensitivities are actually painful to the individual.

What Causes Autism?

*We don't know!

*Many studies are being done to discover the origin. They do know that it is strongly genetic. It is generally regarded to be of neuro-biological origin. Researchers suspect that there are a number of different genes that, when combined together, increase the risk of autism.

*In 1998, a very small study (only 12 subjects) was published that suggested a causative relationship between the MMR vaccine & autism.  This caused many families to choose NOT to vaccinate their children.

*However, this study was retracted in 2010 by the same authors of that study as well as the medical journal that printed it. "We wish to make it clear that in this paper no causal link was established between MMR vaccine and autism as the data were insufficient."

*The Immunization Safety Review Committee on MMR Vaccine concluded that there is NO association between autism & the MMR vaccine.

*Another theory has been tested & tried is the Gluten-free, Casein-free diet. However, Dr. Susan Syman of the University of Rochester reported on her study that shows this diet does not appear beneficial for children with autism. "The removal of gluten and casein from the diet of a controlled group of young children with autism did not demonstrate a change in sleep habits, bowel habits, activity or core symptoms of autism," Hyman said.

*However, on a personal note, more the half of the people in our class told us that this diet has helped their children TREMENDOUSLY. So, I say...if it works, great. If not (as in Ethan's case), great.

*There are several theories being tested: gastrointestinal abnormalities, immune dysfunction, impaired detoxification, nutritional deficiencies or imbalances, and so on. However, overall, at this time, there is little solid, scientific evidence to support these proposed biomedical causes.

What Happens Now?
*Research has show that early detection and intervention can make a significant difference in the life of a child with autism.

*In fact, with appropriate early intervention services, from ages 3-5, between 20% and 50% of children diagnosed with autism will be able to attend mainstream kindergarten. (This is why I am so passionate about Ethan's early intervention.)

*Our instructor told us this....If the child has spoken words by kindergarten & there is a high cognitive development, studies are showing that that child has a high likelihood of typically functioning in the adult world.

*There are several types of therapies to consider: Applied Behavior Analysis, DIR Model Floortime, TEACCH Structured Teachin, Speech-Language Therapy, Occupational Therapy, Sensory Integration Therapy, Social Stories, PECS, Relationship Development Interventions, Music Therapy/Auditory Integration Training, Assistive Technology, Special Diets, Vitamin Mineral Therapy, Chelation Therapy, and Medication Therapy.

*When choosing your intervention strategy, remember that each child is unique & have different needs. Base interventions upon the particular strengths and weaknesses of the individual child. Usually, a multidisciplinary approach is recommended.

*Best Practice Guidelines: Starting early is very important, More intensive treatment leads to better outcome, Family involvement is crucial, and Intervention should be individualized to best meet the needs of the child and family.

What Can I Do To Help?
*Parent Tool #1 - Increase Environmental Stucture - We all use visual aids & schedules, but it is critical & effective way to support your child.

*Parent Tool #2 - Have Fun with Your Child! - Don't let them withdraw into their own world....lure them out gently & creatively.

What Can I Expect For The Future?
*We don't know. However, we can promise that your child will continue to grow, to change & to learn! It's up to all of us to help them to reach their maximum potential!

*With appropriate services & guidance, all people with ASD can learn to be part of the world around them, and live a meaningful and productive life.

*If you're willing to learn from your child and love him/her unconditionally, you will find your life enriched by the experience. It happens all the time. Parents and family members the world over become more compassionate, learn the power of love, and discover reserves of courage, determination, creativity, and fortitude they never knew they possessed. And you will too!

Thursday, November 10, 2011

Ethan's Sensory Diet - Smell, Sound & Sight

Across this blog, I have been talking about Ethan's "sensory diet." Here is a reminder of what this is.....

"A sensory diet is based on the concept that each child requires a certain amount of sensory input & activity to be the most alert, adaptable, and skillful. The primary goal of a sensory diet is to find sensory-based activities to help a child feel more alert, calm and organized. Our senses give us information about our body & also about the environment around us. We use the information to successfully interact in the world. Sensory integration is the ability to block our irrelevant sensory input while paying attention to relevant input." ~Institute of Physical Medicine & Rehabilitation

Each child has their own unique sensory diet. Some kids crave loud noise while for others that may be a trigger to setting off a meltdown. Another kiddo may enjoy bright, fast moving lights while another child may prefer a dimly lit room. So, when Ethan began Occupational Therapy, the first thing we did was investigate his senses in order to see what input his body needed & what would send him into a state of meltdown......we were finding his specific Sensory Diet.

Growing up, we were taught the 5 senses......sight, smell, sound, taste & touch. Going through this OT process with Ethan, I also learned about the Proprioceptive system (body awareness) & the Vestibular system (movement & balance). I have already touched on these last 2 systems as well as taste & touch. I want to finish up my notes on this topic in today's posting.

First, closely related to taste, is the sense of smell or the Olfactory system. Certain smells can awaken or calm ourselves. I relate this to candle shopping. Have you ever stood in the candle section of a store "testing" all of the different smells in order to find the candle you want to purchase? Why did you pick that particular scent? Or have you said or ever heard anyone say, "I LOVE the smell of_________!" Well, there is a reason that you are drawn to particular smells. More than likely, it is causing your body's senses to either relax or energize. Same thing for people with autism....the only difference is they tend to react stronger than a typical person. Typically, "scents (and tastes) that are generally calming & easier to process include: almond extract, butter, banana, cinnamon, lavender, pine, soap, vanilla, chamomile, rose & sweet foods. Scents (and tastes) that are generally invigorating & harder to process include peppermint, lemon, garlic, mothballs, vinegar, fish, burnt material, coffee, dirt, chocolate, onion, basil, salty or sour foods." (ipmr)

We tested Ethan and found that he was MOSTLY indifferent to smells. However, we did notice that he has a difficult time eating at the table when dinner smells are still high. As I am typing up these notes, I am remembering last night's dinner. I made salad, spaghetti & garlic bread......GARLIC bread. If you see in the notes up above, that is a energizing smell. Spaghetti is one of his favorite foods, but last night, he wouldn't hardly step foot into the kitchen/dining room. We coaxed him into taking 3 bites, and then he was outta there! After awhile, he came back in & asked for waffles.....which would include syrup.....a sweet (calming) food. And, by that time, dinner has turned cold......and cold food has less smell than hot food. This is one of the reasons that Ethan & I can't cook/bake together....the smell is too much for him. Honestly, I often forget about smell because it isn't a BIG trigger for Ethan. But if our kitchen has a strong smell of any kind, he won't come in....too much for him. So, we do have to be careful about buying scented bubble bath, burning candles, wearing perfume, air fresheners, etc. In fact, when I brew my coffee, I immediately pour the whole pot into a large thermos in order to keep the smell to a minimum. So, our conclusion is that Ethan doesn't have a strong response to specific smells.....only overwhelming smells.

Second, is the sense of sound or the Auditory system. This is a MAJOR one for our Ethan. "Individuals can be defensive towards loud noises, have difficulty attending & focusing in noisy environments, &/or be calmed by music. Many children do well with verbal warning of noises. Rhythmical beats, decreased unexpected noises, use of headphones or ear plugs can be calming. Loud irregular beats and unexpected noises (such as toilet flushing or fire alarm) are alerting." ~(ipmr)

We did not need to test Ethan in this area.....this is the reason we knew Ethan needed OT. We already knew what he could & couldn't handle. When he was an infant, he would instantly calm when we would turn on our range hood in the kitchen, but he would cry when I would vacuum. He would fall asleep in his crib to a CD of white noise, but he would cry when I would use the blow dryer. We already knew these things from his infancy. Loud noise, commotion, and transitions are Ethan's BIG triggers....he is easily set off with these things. His big triggers are high frequency noise (electronics, appliances, etc.....another reason he won't cook with me in the kitchen....I think the one time I foolishly used the blender did him in for life.), but he craves the low frequency (car motors, white noise, etc.) In order to help him cope &/or calm himself, we use several things. Ear plugs/Headphones, verbal warnings/cover our ears, social stories or practice prior to an event, white noise machine which includes rainfall, ocean waves & a lullaby song....that is in 4/4 time (calming), quiet time, transition phrases, and quiet silly songs. This is Ethan's most difficult sensory system to overcome, but he is getting better the older he gets......and we are getting better at helping him as well.

Lastly, is the sense of sight or the Visual System. "We use our visual information to alert and calm ourselves and to help with focus and attention. Some children become over-stimulated by visual input such as fast paced TV or watching a ceiling fan. Decreased clutter, dimmer lighting, small enclosed space or slow moving visual stimuli tends to be calming. Fast paced visual input, highly decorated room, fast moving toys/lights tends to be alerting."(ipmr)

This is an area that affects Ethan very little. We experimented with several types of visually calming & alerting activities, and he had no response either way. However, we did find out that Ethan loves watching a fire as well as a fish tank, he enjoys visual cues such as a picture schedule, and he loves visual games like match games or dot-to-dots. However, let me say this......although certain sensory systems do not seem to seem to cause a reaction from Ethan, combined together they can be triggers for a meltdown. For example, in out-of-routine situations, I am always aware of any extra sensory overload. We are already tapping into a trigger due to being out of the ordinary. So, that mixed with a lot of visual stimulation could cause a meltdown. If we go to a new environment, I am trying to be aware of new stimuli......fans, appliances, commotion, etc.....in order to prepare for a possible meltdown. Usually, I can see that Ethan has tolerated all he can, and we remove him from the situation before the meltdown occurs. Lately, he has been doing VERY well at handling new things & tolerating unfamiliar stimuli for longer periods of time. YAHOO!!!!!!!!!

I know this is a long entry, but I wanted to finish up Ethan's Sensory Diet. Now, I can file this paperwork away.......but not too far out of reach. I like to refer to it time & time again in order to refresh my memory as well try new recommended activities with Ethan. And, maybe, someday Ethan will want to cook with me in the kitchen......just maybe without the blender.....maybe rice crispy treats!?

Ethan's Rice Box. Tactile System=Calming. He will bury the toys & dig them out. Nice way to use happy meal toys!

Similar to a sandbox, he can dig in this rice bin. It's messy, but it's worth the 10 min clean up for the 30 min of playtime.

I had looked all over for these, and finally found them at a toy store in St. Louis. These are great to work his "shoulder" muscles....which help with his proprioceptive system.....and will help him with his HANDWRITING!

These are most of Ethan's tactile system toys....or fidget toys. They are great for the car & the dinner table.
Ethan's headphones & ear plugs....great for making loud sounds quieter.
Ethan's sound machine. I think I've posted this before, but we use this all night long. This helps him sleep soundly & block out noises that could wake him up. He has started requesting what he wants to listen to...I love it!
This is Ethan in a BOUNCE HOUSE! Less than a year ago, he wouldn't go near one because the air-blowing motor sound was too loud. Late this summer, he played in this bounce house (that was surrounded by 2 other bounce houses) for more than an hour! He started with ear plugs, but they didn't stay in too long before HE took them out! YEA!!!!
Here is Ethan at his school's Halloween parade. He handled it just fine...with a little ear covering action.
Here are a few visually organizing toys that help Ethan in high anxiety situations. We use these when we run errands. Stickers & flashcards that he can organize/line up.

Again, I think I put this on here before, but this lamp includes cars that go around & around. We bought it to help soothe Ethan, but he doesn't seem to be interested in it anymore....but it sure is cool!!!

Here is an example of a visual schedule. These help Ethan know what to do next, and he really likes them. However, once he knows the schedule, he doesn't use/isn't interested in them anymore.

OK! That's the end! This is Ethan's Sensory Diet!

Tuesday, November 8, 2011

"If, Then"

Awhile back, my mom, my husband & I attended a Dr. Temple Grandin conference. During that amazing time of learning, we sat next to a wonderful lady. She's the type of woman you could hear talk for days & never tire of what she has to say. She was fun, upbeat, and extremely knowledgeable in her field. She was a speech therapist! In fact, she retired last year, but came back for 6 weeks in order to fill in for a friend......and, I think, to influence my world.

During our many conversations, she told us about a "trick" she uses with her students. Although autism looks very different among the spectrum, there seem to be a few common characteristics. One of them is the obsessive nature. For example, if Ethan wants to listen to a particular song in the car, he will ask for it repeatedly until we oblige him. The longer we put off put him off or the longer it takes for us to find that particular song, the more intense his urgency.....and ultimately ending in a meltdown. My example is a very minor example, but it does become a real issue when it comes to eating, toilet training, social etiquette, and so on......situations that he MUST learn in order to be able to function in the world.

As I said before, we started using Disney's Special Agent OSO's "Step One, Two & Three" strategy. Well......that worked for Daddy, but not for me. All I would do is say, "Step One,"....and he already knew that I was going to make him do something other than what HE wanted to do.....and a meltdown would occur. So, when our new conference friend started telling me about "IF, THEN," I was all ears.

When a kiddo wants to do nothing other than what THEY want to do....whether that be a toy, a game, a particular food, an activity, etc........you use the IF, THEN format. So, using the requested song example, I would say, "Ethan, IF you listen to If Your Happy, then you can listen to Itsy Bitsy Spider." This has been a miracle at our house. I use it for EVERYTHING!!!!!!

*If you eat one bite of dinner, then you get one fruit snack - this is how I get him to eat stuff he doesn't want to eat

*If you pick up your books, then we can play with puzzles.

*If we change your diaper, then you can play with the Lite Brite.

This is how we started, and now we are able to....as I'm reminded by Temple Grandin....we are able to "stretch him." I can now have Ethan do 2 things before the reward. Sometimes Ethan will pick up his own toys without me prompting him. Then, he will come to me & say, "If you pick up your toys, NOW we can play iPad." Sounds good to me kiddo!!!!

I will be honest....it is easier just to put his favorite song on repeat, but, in my opinion, that does Ethan a HUGE disservice. He can't always have his own way. But sometimes, using my discernment, I realize that he is only 3 years old, and most 3 year olds want to hear the same song over & over again or watch the same movie over & over again. And sometimes I will allow him to hear a song over & over again during a trip to run errands.....but that is mostly so he will be calm for the errand part. It really is all about discernment, and thinking about what will be best for Ethan....either in that situation or in the future. But I'm so glad that we have found this tool that is currently helping Ethan to "stretch".

Friday, November 4, 2011

A Cute Story

I just "woke" Ethan up from his nap. Why the quotes? Because he wasn't sleeping....he was singing "I Wish You Well" song from school....super cute. So, when I went into his room, I "crashed" on his bed next to him. Here is the conversation that followed......

Me: Ethan, what are you doing?
Ethan: Up or Down (while pointing up & down)? UP!
Me: You want to get up?
Ethan: Yes!
Me: Noooooo.....you want to snuggle with Mommy!

Then, Ethan gets a big smile on his face as he lays back down. Then, I wrap my arm around his legs & hug them while saying, "snuggle, snuggle, snuggle...."

Then I hear this.....

Ethan: Step One.....Snuggle with Mommy. Step One COMPLETE! Now, step two. Get up.

LOL!!!!!!!!!!!! Oh that kid cracks me up!!!!!!!!!!!!

*Extra Note: My husband started using "Step One, Step Two, Step Three..." from the Disney cartoon Special Agent OSO. Ethan loves the show & has started having less anxiety about doing things he doesn't want to do when we use this format. And, now, Ethan is creating his own steps....it's so funny!

FREE Inclusion Fusion

I have always been very involved at my church. In high school, God showed me the need for a worship service during our youth group's mid-week service.....so I led it. In college, God showed me the need for a college Sunday school class....so I taught it. When I became a stay-at-home mom, God showed me the need for frequent "girls-only" fellowship opportunities.....so I organized them. Throughout the years, God has helped me lead Bible studies, participate in plays (onstage & backstage), sing in the choir & praise teams, served in the children's department and many other random areas of ministry. During the last couple of years, God led me to teach a new adult Sunday school class. Recently, however, God has been taking me in a new direction.

As I look back over my years of volunteer ministry, I have noticed a pattern.....God seems to use me as a "starter". God places a ministry on my heart & helps me start it.....and then releases me from it.....and someone else takes it. For example, when we started doing our youth group's Wednesday night service more like a church service, I led worship by using a CD of music, a projector to shine the words on the wall, and my loud voice. NOW! Our youth group has their own worship TEAM!!!! They have their own band, a group of singers, a computer to show the words on a mounted screen, a sound system, and so on. They are amazing! More recently, I organized a summer playgroup for moms & their little ones at our church. NOW, one of my best friends runs it, and they meet every week!!!!

A couple of months ago, I was very comfortable with my volunteer ministries. I attended our church's 1st service, then I would co-teach an adult Sunday school class. Then, on either Sunday night or Wednesday night, I would volunteer in our church's nursery. It was perfect, and I loved every minute of it! I finally felt like I had found my niche, and God was going to use me in these places of ministry for YEARS & YEARS!

And then, early this summer, God started stirring my heart. You know.....you are going about your everyday life, and then God starts pulling at your heartstrings. He starts showing you a need EVERYWHERE you go. It seems like everything you see/hear/read/etc. is about what God is speaking into you. At the grocery store, on the radio, in your circle of friends, in your devotions, at work, etc. For me it really started when, my husband & I went to an Easter Seals presentation specifically about autism. We were going to help better understand our beautiful Ethan. However, during the presentation, God was talking to me loud & clear. These things I was learning to do for my own son, God wanted me to do for other people at my church. I, naturally, started coming up with excuses......I'm not experienced in this field as others, I don't have any more time to give, I have already committed to my adult Sunday school class, etc, etc, etc....

But God kept placing this on my heart until I was so filled with love/passion/burden/joy for this new ministry that I could think of nothing else. Now, I realize that some people will think that I am only doing this for my own son, but, honestly, nothing could be further from the truth. God has given me a wider vision than my own personal needs....I feel a strong need to help other families with special needs. So, late this summer, I approached our pastoral staff with the idea of starting a special needs ministry. Our lead pastor told me that God had been showing him the need for this as well. As I told my Sunday school class one day, "It creeps me out when God does stuff like that!!!!" I love it!

So, extremely long story short, our church currently has an advisory board in place. A group of us with a passion to see families with special needs, not only attending church, but ministering, learning & worshiping about our awesome God. We are praying & planning for what this ministry will look like at our specific church. This is why I am so passionate about this on-line conference. Not only is it free, but you can watch the videos when you have time during the next 2 days. I am so excited to soak up what these speakers have to say & use it at my church.

Thursday, November 3, 2011

Jason McElwain

A friend of mine posted this link on her facebook account. When I watched it, I was a crying mess. It is a beautiful story. Check out this short story but be sure to have the tissues handy!!!!

Wednesday, November 2, 2011

A truly HAPPY Halloween!

When Corey & I imagined what our holidays would look like when we had kids, we were probably like most parents. For Halloween specifically, I envisioned me sewing costumes, carving outrageous pumpkins, baking delicious & creatively decorated (yet somehow healthy) treats, helping with classroom parties, and so on. Well, even before we knew of Ethan's official autism diagnosis, we realized that our "holiday dreams" were just that....a dream. Whenever a holiday came around, Ethan had difficulty.....too much noise, too much out of routine, too much "new-ness". Even putting decorations up around the house can cause Ethan's anxiety to climb.

So, when Ethan's school sent home a note about his class participating in a costume parade & simple class party, I began to have anxiety myself. I always thought that one of the major perks about being a stay-at-home mom was that I would be able to participate in day-time school activities....and I was so excited to go!!!!! But then I started mentally walking through the day.....through my son's eyes. And I decided that it was better for him if I didn't go. Surprised? Well, Ethan seems to be handling things better without me. For a long time, Ethan needed me to help him handle his nervousness....through my familiar-ness, my routine words of comfort, my applying his sensory diet, etc. But recently, he seems to be better behaved for others & if I'm around he seems to have more meltdowns....almost like he's relying on me & not the skills he has learned. For instance, if we go out to eat & he sits by me...he is constantly pushing & "wallering" me in order to gain the deep pressure that he needs. If he sits by Corey, he doesn't push against Corey but instead he asks to draw, color, etc. I'm just assuming it's a mom thing. I also thought that if Ethan saw me coming to his classroom, he may also think that it was time to go....since I pick him up from school. So, I thought it would be better for everyone if I didn't go.....Ethan would be better behaved & have a better experience. Another "dream" I had to let go.

However, my AWESOME husband decided to go to Ethan's school party instead!!!!! We decided that this would be the best for everyone. Ethan would have a parent there, but would still be better behaved than if I went. And Corey told me that Ethan did GREAT! There was a lot of commotion & a lot of new, but Ethan handled it all very well! NO MELTDOWNS!!!!!!!!!!!! In my book, that is SUCCESS!!!!!!! Maybe I will be able to go to the next one! My dream is not lost!

Our "Steak-n-Shake Guy"

School party

Ethan's school party was on Friday, and then that evening my oldest niece had her birthday party....with about 50 people. Again, I was nervous as to how Ethan would handle TWO parties in one day. And, again, Ethan surprised me! He did GREAT! He played the games, he interacted with other adults AND kids, he even ate a NEW food! WHO IS THIS KID!!!!!!!??????? At one point, I almost started crying. Ethan was playing by himself at my feet while I was talking with a friend. The other kids started playing a game that resembled a "cake walk".....you walk in a marked out square while the music plays. When the music stops, the caller draws a number. If you are standing on that number, you get a cake.....or in this case...prize/candy. All of the kids were walking in the square, and Ethan stands up.....walks over to the kids.....and jumps in line! He started walking in the square with the rest of them!!!!!!! I couldn't believe it! I was so stunned that I totally didn't hear a word my friend said....in fact I may have cut her off to point out what Ethan just did!!!! I seriously had to fight back tears. Ethan would not have done this months ago, and, yet, here he is doing it on his own!!!!! He only went a couple of rounds before he got upset, but he still didn't have a meltdown....just whined. YEAH!!!!!!

We were able to last at the party for 1.5 hours before Ethan had maxed out. The next day was Saturday, and we went to a movie & had another birthday party. Ethan was cracking me up during the movie because he was talking to it......REALLY loud! It was hilarious! And the whole time I just kept thinking about how lucky we are to have a child who is TALKING. Sorry to the folks sitting around us, but my kiddo is talking up a storm, and we are LOVING it! Then, at the birthday party that night, Ethan was able to last 2 hours. And even then we only left because he was getting cold (it was outside), but I think he could have gone longer. At one point, he started to get upset about something. Guess what it was!? He was upset because there wasn't anymore room at the kids table & he WANTED to sit with the other kiddos!!!!! CAN YOU BELIEVE IT!!!!!

The next day was Sunday, and Ethan once again went to his new classroom. One of his teachers told me that he, once again, did great. Then, that night, our church hosted their annual "Trick or Trunking". We used to do this in the parking lot, but because of the cold & sometimes rainy weather, we now do it in our gym. Anytime we take Ethan into the gym or that type of building, I get nervous because the noise echos in there...making it louder. So, just in case, we had his headphones. But......once again, he surprised us & did EXCELLENT! I never saw him even cover his ears! HE LOVED IT! He went from person to person....saying Trick or Treat, taking only one piece of candy, and saying Thank You. It was amazing to see this because at Christmas last year, our church held a kids party-type event in the gym, and Ethan had to wear his ear plugs & sit on his Grandpa's lap most of the time. And here he was this weekend, just trick-or-trunking with the rest of the kiddos....and loving every minute of it!

Waiting to go Trick or Trunking at church

Ethan & Winnie the Pooh at Trick or Trunking
This picture is a little blurry because the subject was moving quickly! Trick or Trunking from station to station.

Then the big day....Halloween. HE LOVED IT!!!!!! Because he was a "Steak-n-Shake Guy" we decided to take him there for dinner. He LOVES this restaurant, so we originally thought that if he couldn't handle all the Halloween activities, he could at least have a special day by eating at his favorite place. 'Course that was before he handled the weekend so well. But we had planned on doing it, so we went. And the staff there was so excited about his costume! The manager said to him....."You need a name tag to go with your costume!"....and she made him one! Ethan was beyond thrilled! He thought that was the coolest thing EVER!

Steak-n-Shake manager made Ethan his own name tag!

"Welcome to Steak-n-Shake!"

After dinner, we came back to our neighborhood & started trick-or-treating. Ethan LOVED IT! He would say "TRICK-OR-TREAT!", take one piece of candy & then say "Thank You!" EVERY TIME! After we would get done at one house, he would say, "Now, let's go find more candy." And then as we were walking up to the next house, he would say, "Now, let's go knock on THIS door." He was so excited that he was practically running from house to house. It was so precious. Corey & I kept laughing at how much fun he was having, and how much we were enjoying his joy. After we did several houses in our area, we made the family rounds. First to my mom's house, then to my mom's friend's house, then to Corey's parents house, then to Corey's aunt & uncle's house, and finally to meet up with my sister. By the time we got home it was 10pm, but Ethan was showing no sign of being tired. He was having a GREAT time! I thought he would be maxed out.....not only from the busy weekend, but having to endure so many transitions & new things. But this kid loved every second of it.

VERY excited! He got smiley face fruit snacks!

I was having just as much fun as Ethan
"Thank You!"
When I realized that Ethan had autism & had difficulty in so many situations & experiences, I mourned. Not because I don't love my child, but because I had to let go of so many of MY own hopes, dreams & plans. But, for me, I couldn't stay in the mourning period....although some days it sneaks up on me. For me, I decided to be proactive & help Ethan in anyway I could. And, as Dr. Temple Grandin says, "You gotta stretch 'em." However, stretching Ethan is difficult because it's hard on him......which makes it hard on me. But, I keep reminding myself that it will all be worth it for him in the long run. But, I gotta tell you...............most of the time that is easier said than done. It would be so much easier on me if we stayed at home & let him line up his cars for hours or zone out on computer games for hours. BUT that won't benefit Ethan......and so I continue to stretch him. And this weekend, I was able to see my son truly enjoying a holiday......a crazy, noise-filled, out-of-routine holiday. And that gives me the strength to go on.

And when my son walked into school the day after Halloween, surrounded by his peers, their parents & teachers, and said as loud as he could, "HAPPY HALLOWEEN!", everyone laughed & smiled. And I thought to myself........"Ethan you have no idea how truly HAPPY it was."