Inside Out Clothes

I just put in my first load of laundry for today. As I was adding clothes to the washer, I became very frustrated. Every single item of clothing of Ethan's was inside out which meant that I had an added task of turning every thing right side out. I was getting so annoyed, but then I stopped as God gently reminded me....it wasn't that long ago that Ethan couldn't undress himself at all. Once I realized that these inside out clothes were a sign of progress & life, I became overwhelmed with emotion....

"Thank you, Lord, for blessing me with this child."

"Thank you, Lord, for providing a path for him."

"Thank you, Lord, for the amazing progress he has made."
"Thank you, Lord, for the person I see him becoming."

"Thank you, Lord, for guiding my steps as we parent Ethan."

"Thank you, Lord, for these inside out clothes."

Oh, of course my mind didn't stop there.....I continued to ponder. Why am I always looking at what Ethan CAN'T do....instead of what he can?!?!

Socks. I worked with Ethan for a good 6 weeks specifically on putting on his own socks. He can do his underwear & pants, so we had moved on to socks. 6 WEEKS OF SOCKS! I was going out of my mind. Then, on one of my "days off" (thanks to an amazing husband who insists I take these occasional days for myself), Corey did socks with Ethan. Ethan got it. In one day from Daddy, Ethan can now put on his own socks! YEEHAW!!! I was soooo excited. But shortly after that, can you guess what my new fixation was??? Shoes.

WHY do I do this????? Ethan has come so far in his therapies yet I am always looking for the next "thing" to work on or to fix. What is up with that????? Maybe it's the teacher in me who is ready to teach the next lesson or the oldest child in me trying to be perfect at my job.....whatever the reason, I don't like it.

So......I'm going to try to look at thing differently from now on....

Instead of seeing a kid who can't sit still, 

I'm going to see a child being among his peers.

Instead of seeing a kid who doesn't eat much, 

I'm going to see a child that is taller than his peers.

Instead of seeing a kid who can't self dress, 

I'm going to see a child who can ask for his favorite shirt.

Instead of seeing a kid who cries if a cartoon character gets hurt, 

I'm going to see a child who is becoming sensitive to others.

Instead of seeing a child who doesn't sleep well, 

I'm going to see a child with an amazing mind that doesn't ever stop.

Instead of seeing a messy room, 

I'm going to see signs of life of a child I prayed for.

Instead of seeing inside out clothes, 

I'm going to see a child who is growing in every way.

Blooming Once Again

The last several weeks I have been absent from my blog. I needed to take a small vacation from some of the extras in my life in order to focus on my major priorities. Not only because my Grandpa passed away & then the holidays came, but because I was becoming overwhelmed with my daily life & things were beginning to swallow me whole. I needed time to step back & regroup.

It reminds me of a plant that I have in my kitchen. My mom bought me this beautiful plant for Mother's Day last year. I left it outside all summer, and that thing took off! I have NEVER been able to keep a plant alive, but this one was bound & determined to survive despite it's non-green thumbed caretaker. Around October, my mom told me that I needed to bring it inside for the winter.....and since I always do what my mom tells me (do you believe that?!)......I did as I was told. I really wanted this plant to grow & thrive....it was just so beautiful!

Once inside, the sheer scale of this thing was just too big for any place in my home. And as I began to really examine this plant, I noticed that due to the plant being so overgrown, some places were beginning to die.....the plant had grown too big for it to sustain it's self. So, I "googled" how to split a plant & how to prune a plant....and set to work.

Holding my breath, I have watched & waited for my plant to regain it's blooms....to see if it would survive my best efforts.

Guess what happened this week.....

BLOOMS!!!!!!! IT SURVIVED!!!!!  Seems like we are both ready get back at it! So, I apologize for being gone for so long, but I needed to separate & prune some extras in order to maintain my sanity. But, I can't wait to update you all on what has been happening with us! Happy New Year Everyone!!!

Strength

"Strength isn't something you have. It's something you find." ~Emma Smith

Recently, I was watching a film based on the life of Emma Smith. It was a very good movie, but something she said during the film stuck with me....so much so that I could hardly concentrate on the rest of the movie. Her daughter was commenting to her that she wished she was as strong as her (Emma Smith). Then, Emma said, "Strength isn't something you have. It's something you find."

As I reflected on this scene, I related so much to Emma. I am constantly being asked how I have so much patience with my child who has autism, how can you be so calm when he throws a tantrum, how can you be so happy all of the time, and so on. I'm not trying to toot my own horn, but I am asked questions like this almost daily by people in my life. In fact, last weekend my husband & I were fortunate enough to have a date including a meal alone! Our waitress commented to my husband that our home must be full of laughter because I was such a cheerful person. OH...you should have seen the look my husband gave her! It was priceless!!!

But I have to say....I am NOT cheerful all the time or have endless amounts of patience with my child or 24 hours of energy to play flash cards with my kiddo, but I have noticed that since we have discovered Ethan has autism.....I have found an inner strength that I never knew was inside me. I have just called it Courage....but some have called it Determination, Drive, and even Dedication. And I would NEVER have used these words to describe me....EVER! But now that so many people have commented to me about this, I have taken stock in who I am. Maybe it's because I'm now in my 30s and becoming more "self-aware" so to speak, but I guess I AM stronger than I thought I was. But Emma Smith was right. I found it.

And I think every parent, especially those with children who have special needs, comes to a "fight or flight" point in their parenting. For me, it was definitely once I realized that Ethan was developmentally delayed....which was well before his actual ASD diagnosis. I mentioned once before that I felt like my child was trapped inside a burning building, and it was my responsibility to go in & get him out. And that was where I found my strength. In that moment, I summoned all I had and prayed to God to help me with what I knew I was lacking......and every day I do this again & again. Each day God reminds me that I was chosen to be this child's mother for a reason, and I feel responsible to my Lord for my parenting decisions & my daily choices. And He helps me every inch of the way. 

So, yeah, having a child with autism is not the easiest road. But our entire family has grown in our faith & character so much...not just me. I count this as yet another blessing of being Ethan's mama. He has taught me so much about love & perseverance. I look at him, and I can't help but advocate for him! To be his biggest cheerleader & help him in anyway I can! If that means calling up total strangers, knocking down doors, risking not be liked, filling out TONS of paperwork, going to conferences, and paying a bunch of money for things that will help Ethan....YOU BETTER BELIEVE THAT I'M GONNA DO IT! And people, you should see the difference in Ethan. There are no words to describe it. The last several years of ups & downs, of joy & frustration, of lost & found.....it is ALL BEEN WORTH IT TO SEE HOW IT HAS HELPED ETHAN!!!! He is such a different child than he was even MONTHS ago! His struggles & frustrations seem to be shrinking every day! IT IS A-M-A-Z-I-N-G!!!!!! 

So, I can see what Emma Smith was talking about when she said that strength is something you find because I found mine when I needed to help my child. But, I think some people ARE born with an inner strength because I have seen it in Ethan from the moment he was born. He is truly amazing.

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 paper....one 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 me....it 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.

Preparing to Jump

Each school year marks a new beginning filled with excitement as well as a bit of anxiety. As we are about to embark on yet another school year, I am reminded of my previous teaching days. During the summer & especially those weeks just before school opened for a new year, my mind was filled with ways to keep my teaching fresh, ways to keep the classroom organized & inviting, and ways to keep my students to reach their fullest potential.

Now that I am a play at home mom of a child with autism, my mind is filled with similar thoughts. How can I keep our routine consistent yet exciting? How can I provide "down time" in a very full yet much needed school schedule? How am I going to reinforce the skills he is working on at school?

For over a year now, Ethan has spent most of his days at home with me. Though he has participated in therapy and an early intervention program since we "knew", most of the hours in Ethan's day were at home under my care. Because of that, I tried my best to provide additional at-home therapy, DIY techniques given to me under the direction of our therapists & the resources provided to me as well as give Ethan many opportunities to interact & play with his peers. It has been a lot of research & work done on my "mommy free time." But it has been very enjoyable for me to be able to do this for Ethan as I learned more & more about him as well as seeing how it has been able to carry over & help others.

However, this school year is going to look very different for Ethan & me. I will be less of a therapist/teacher and more of a taxi cab. Two mornings a week, Ethan will attend the Easter Seals Autism Program, and every afternoon he will attend our school district's Early Intervention Program. Both of these programs have been so vital in helping Ethan achieve his best, so we saw no other way but to continue them both. After next summer, neither of these programs will be available to us anymore. So our opinion is to do it while we can!

During the work week, Ethan will only be home with me 3 mornings. (insert sad face) So, my role this year will be more "typical" of that of a play-at-home mom. I won't need to do as much therapy but instead provide ways for Ethan to rest & rejuvenate. Not that we won't be continuing our sensory play or discovering more DIY therapy & tools that will help Ethan & others, but I don't feel the majority of the pressure for ME to be doing these thing with Ethan.  Does that make any sense? Almost like a promotion from lay person to coordinator!

So as our life is about to become VERY busy, I am also VERY excited for all of the opportunities that have been sent to Ethan.  He has been doing so amazing this summer due to his participation in these programs. Because of these amazing teachers & therapists, this summer Ethan has.....

1. Began talking so much to the point of me telling him to shush! Something that I NEVER thought I would ever tell this child (who we once upon a time thought would never talk).

2. Done more activities than ever before! This summer we visited the Children's Museum (a very loud & frenzied but fun place), and Ethan thoroughly enjoyed it for 2 hours...and not one meltdown! We also visited our town's Splash Pad (a bunch of fountains that spray & kids can play on them), the library, the movie theater, the drive-in movies, the Fourth of July fireworks, birthday parties, and so many more!

3. Extended his time at church! For the past year, Ethan hasn't been able to handle BOTH Sunday school & Children's church....a total of 3 hours with about 20 loud playing preschoolers. But this past Sunday, Ethan did both! And his teachers said he, "Did AWESOME!" YEAH!!!!

4. One of my favorite things that Ethan did this summer was......jumping off the diving board! Because he watched the Olympics with me, he knew HOW to do it. He also had been "practicing" by jumping off his indoor trampoline & jumping onto the floor. When we went to his cousin's 3rd birthday pool party, Ethan saw many family members going off the diving board. He turned to me, and said, "What's that called?" I told him it was a diving board, and then he said, "I want to jump off the diving board." Well, I wasn't about to say no, so we found Uncle Chris (who was already under the diving board waiting for his kiddo to jump in), and he agreed to be there for Ethan too! Ethan jumped without any hesitation! He just climbed up on the diving board, went to the edge & jumped to Uncle Chris! After Ethan got his bearings, he held up his right arm & said, "USA! USA! USA!" It was AWESOME!!!!!

As we approach this new school year, I am once again filled with excitement as well as a bit of anxiety.....a bit like jumping off the diving board for the first time. But just like every school year, we will come out with some highs & lows, but mostly......progress. And that fills my heart to see my child growing up surrounded by teachers, therapists, family, friends, and a church who not only love Ethan....but are rooting for him! Our cheer is not, "USA!", but instead....."ETHAN! ETHAN! ETHAN!!!!"

Ethan is FOUR!!!!

Ethan - 3 months old

Four years ago, the most precious baby was placed in my arms, and my heart grew 10 times it's size. I am so blessed to be this amazing kid's mom. The last four years have been a roller coaster of emotions, dealing with all of this autism stuff, but I wouldn't change one thing. Ethan has been fearfully & wonderfully made by God, and I think he is perfect!

On this day, his 4th birthday, I am encouraged to see how much he has overcome & how he is developing into a pretty awesome little boy. He is funny, sweet, sensitive, silly, and joyful. I thank God every day that I get to be Ethan's mommy!

HAPPY BIRTHDAY, ETHAN! WE ALL LOVE YOU!!!

Ethan and Me

Me, Corey, and Baby Ethan

Happy Birthday my sweet baby boy!

Out Of The Fire & Into The Pool!

I think the 1 year anniversary of Ethan's diagnosis was harder than the ACTUAL day we heard the news. Maybe I just dove so deep into helping Ethan that I never really let the emotions surface fully. Who knows. But, as of today, I feel so differently about things.

In one of my entries last year, I compared Ethan having autism to him being inside a burning building....and I had to save him. I don't really feel that way anymore. Maybe because time has passed or maybe because he has come so far in a year's time.....or both.....but I don't really feel the need to "save" him from autism. I don't sense the urgency that I once did. Maybe it is my anxiety medicine working or just having lived with the diagnosis for awhile. I could speculate "why" all day long. But the bottom line....I feel that Ethan is out of the burning building I once saw him in....and I'm so glad!

I'm really just enjoying him more & more.......and worried less & less. I see him growing every day, and that comforts this mama. I love the lazy days of summer....just enjoying his company & spending our days playing. Our hard work over the last couple of years is paying off, and Ethan has come so far. I'm so proud of him. And I'm taking full advantage of our time together this summer. We are able to connect & talk & be silly better than ever before......and I'm lovin' it! I'm soakin' it up!!!

So, no longer is he in a burning building needing to be rescue. I feel like we found the path out of the scary fire, and we are moving farther & farther away from the flames. It's time to relax & enjoy the journey a little more. Maybe even skip & sing (although not too loud) along this new scary-free path.....

Here is a short clip of Ethan playing our our pool. He is laughing at a wind up frog that swims in the water...I just love this kid!

One Year Later

This is not going to be an easy post for me. Honesty.....it's not always the easiest thing.

It has been one year since Ethan was tested & officially diagnosed by the Easter Seal's team with "classic autism." What I want to say is that it's been a hard year, but we are fine now. Well....sorry folks.....I'm not fine. The fact that my one & only child has this developmental disorder is just as hard on me as it was a year ago. He has & is making HUGE progress, but I HATE that my child has this disorder. I wanted so much for him, and this was NOT on my list or in my plans.

I just came home from our church's annual Women's Banquet. I actually had to come home early. I was about to lose it. I made it to my van before it all came spilling out....thank goodness.

I LOVE our Mother's Day weekend banquet. In fact, last year, I was the point person to plan it, and this year one of my best friend's did it. It was beautiful. We had our amazing 4 course meal provided by the men of the church and then Rachel West Kraemer, our special speaker/singer for the evening, began her performance. It was wonderful. But by the 3rd song in, I was already crying & trying to keep it together. Her songs were all about God's faithfulness & provision....and one was specifically about going through trials. I think on any other week, I could have handled this with my normal tears. But because of the significance of this week, I was barely keeping it together. My friends were giving me looks & pats of love, but I just was trying to limit myself to "church tears" while I kept dabbing my eyes.

After she sang a bit, she paused & asked for others to speak about God's faithfulness in their lives. I wanted to say something....about how God has been my sole source of strength & comfort on most days of this past year....but I didn't think I could make it through without going into the "ugly cry." After a few testimonies, Rachel shared about how her own son was diagnosed with autism years ago. She began to share their story of love & heartache, and I could keep it together no longer. I quickly covered my face & allowed the tears to rapidly stream down my face. I knew exactly what she was talking about....I know it all too well.

After her story, she began to close with the song, It Is Well With My Soul. After checking with my mom across my table for permission, I left the church. (I love it that my mama already knew...) I couldn't keep it together anymore, & I knew that this song would put me over the edge. I made it to my van & let it happen. Sobbing. Loud, ugly moaning crying. Cries of pain for my baby. Cries of sadness for his non-typical future path. Cries of brokenness. Of a life lost. Of a dream gone.

After about 10 minutes, I made my way home through still crying eyes, walked through the door & into my husband's open arms. This is a familiar scene in our home. The two of us not saying anything, but clinging to one another as we mourn. We don't need words....we both feel it. We share it. We understand it.

Tomorrow is Mother's Day, and I'm positive tonight's tears will not be my last of the weekend. I am so proud of Ethan, and I love every minute of being his mother. I am so blessed to have him as my child, and he has caused my heart to swell 10 times it's size. I love everything about him. But the pain of seeing him locked in his world is heartbreaking....even a year later. The challenges he faces on a daily basis are still overwhelming for this mama. And that's the hard & honest truth.

It's moments like this when it is hard to get out of bed in the morning. It's times like this that I just want to hole up in my home & stay in my protective bubble. It's days like this that even courage & coffee aren't enough to sustain me. So what does? Hearing Ethan babble from his bed in the morning. Seeing his messed up hair & smelling his super awful morning breath. Looking into those eyes & knowing that God gave ME this child. God entrusted ME with this path. And God provides ME with strength & endurance & wisdom. And I am so happy that God chose ME to be Ethan's mama....even on the hard days.

Thank you God for giving me Ethan. I love that kid more than life! Thank you for not only entrusting him to us, but for being there to help us as we navigate this path. I am one lucky mama! Happy Mother's Day!

3 months old

1st Birthday

2 years old

3 years old

Labels

I always kid my sister about her "awareness" to labels. Whenever we go to garage sales, she is looking for labels......Old Navy, Gap Kids, Oshkosh, Carter's, Ralph Lauren, Nike, Levi and so on. Or she'll say things like, "I paid $30 for a brand new pair of Nikes!".....not shoes.....Nikes. LOL. And I think a lot of people do the same thing. Why do we do this? Because we know what to expect from the label. We already know about how it will fit us, how long it will last, or how great of a price we got! It's not that we got around looking at each other tags to see if we are wearing a great brand name, it's that we are familiar with the label & it helps make our shopping a bit easier.

There is a lot of discussion when it comes to labeling kiddos with special needs. My personal feeling about using a label is that it is similar to shopping for name brands. Strange to say, I know. But here is why....

1. When Ethan's behavior is turning heads or we begin to receive questionable looks, I can explain it all away in a few words. "My son has autism." Most of the time, this is followed by a look of understanding or the start of a conversation (which I love) about autism. Occasionally, I will receive a look of pity or a harsh comment, but honestly that has been a rare occurrence. My family is currently planning for a road trip, and I came across these cards like this one to pass out in community settings, if need be. I actually kind of love them! The one pictured here was created by thirtyhandmadedays.

2. It provides the needed services! Having the diagnosis of autism has opened us to a whole new world of opportunities and resources for Ethan. Early Intervention, Ethan's current (and amazing) preschool, Easter Seals, AutismSpeaks, our park district's special needs program and more! All of these have been available to us due to having the "label" on paper. Ethan is able to have MORE help! I love it!

3. It has helped Corey & I to connect to other parents of special needs kids. Being a parent of a child with autism can be lonely because no one else in your world understands what it feels like or what your daily life is like. But, if I look up an "autism support group," I am able to find other people going through similar things, and.....once again.....support is there.

Is Ethan defined only by this label? No. Will I feel differently about this label as he gets older? Possibly. Does having this label lead to negative treatment. Absolutely. But, at this time our lives, wearing this label is MORE beneficial than not. And, even though every person on the autism spectrum has different challenges as well as their own unique super powers, I believe that wearing the autism label can help the lines of communication in our society. When others hear this label, they generally know what to expect, what behavior that looks like and....what I love......how to be helpful, loving and supportive. Society is becoming familiar with this label, and that is making living with autism easier. So this mama is wearing her label proudly!!!!

We Hit The Jackpot!

One day, as I was reading about diagnostic statistics regarding autism, Corey came up over my shoulder & read probably the most common statistic about autism.

1 in 110 children are diagnosed with autism.

Corey told me that he didn't know this data (although I think he just forgot), and then I proceeded to tell him another statistic.

 

1 in 70 boys are diagnosed with autism.

Corey then says to me, "Huh? We hit the jackpot, baby!" as he raises his hand for a high-five. Although I returned the high-five, my mind had already begun to drift. Not moments earlier, I was looking at these same statistics, and thinking, "Why did this happen to Ethan? Why couldn't he have been one of the 69 other boys? Why did he not overcome the odds?" Now, I rarely have these moments of sadness & self-pity, but they do happen....that's just the honest truth. And then I look at my child, and I am reminded all over again at how awesome he is, and how blessed I am to be his mommy. But, truthfully, I have never really considered him or us to be LUCKY to have autism. This comment from my husband really threw me, and I have really chewed on this idea over the last several weeks. Ethan? Lucky to have autism? Hum.......something to think about.....

And then last week, I began reading a book by William Stillman, an adult with Asperger's Syndrome. The title of this book is Empowering Autism Parenting: Celebrating & Defending Your Child's Place in the World. I had actually gone to the library for a book on helping Ethan socialize with other children, and how I might be able to help him achieve that when I saw this book's spine......and grabbed it as well.

I was reading in Chapter Two - Healing & Acceptance in the section titled "Why NOT me?" He was talking about this same concept. Instead of thinking, "Why Me?", think of "Why NOT me?" What characteristics or traits to I have that would help me in raising a child with autism? Again, I had never considered this kind of thinking. And then a paragraph knocked me over.....

"Would you be surprised to learn that I hear from a number of parents who are informed by their CHILDREN with autism that they were CHOSEN as parents by their child, prior to birth and with deliberate intent? (In one instance, a mom told me her son said he chose her over a Japanese couple because he didn't want to learn their complex language!)"

Whether I think this is true or not is not the issue. The paragraph gave me chills. Imagine.....being personally chosen by Ethan to be his parents? That idea.....that concept......is pretty amazing. 

At the end of the day, usually after Ethan is in bed, I begin to reflect on my day. I think about the challenges that we faced, the frustrations that we are trying to work through, the communication barriers that we encountered, the fun activities that we did together, and the laughing that we shared. And, like most parents, I feel that I have missed the mark COMPLETELY.  And, yes, in that moment.....I doubt my worthiness of raising a child with special needs. I doubt my wisdom, my patience, and the choices that I made during the day. But, then I usually end my day thinking that NO ONE could love this child more than me....no one. But, still, never did I ever consider myself LUCKY for this opportunity. Not until these two seemingly random statements.

But I guess I am lucky! Lucky because Ethan is such an AMAZING kid, and I love everything about him. Ethan's autism is just one part of him, but I love that part of him as much as the others. I find him to be funny & fascinating, joyful & wondrous, and sweet & mysterious all at the same time. So, yeah.....we did hit the jackpot! We have such a special little boy, and I wouldn't change a thing about him. We are definitely the lucky ones.

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

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

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

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

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

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

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

Are You Going to Have More Kids?

I wish I had a penny for each time I get asked this question.....I could probably pay for Ethan's college on that alone. And, while this is a very personal decision between Corey & I, neither of us have any problem talking about this topic. The simple answer is no. No....we are not planning on having any other children. Here is why....

1 - Read "Our Story"......I had a TERRIBLE pregnancy & I NEVER want to be pregnant again. Not only was my morning sickness throughout my entire day & my entire pregnancy, but I had to be placed on bed rest as well. People will say, "...but every pregnancy is different. That may not happen the next time." I totally get that, but I am not a gambler. We don't want to take the chance because IF that would happen again, I would be out of commission during what I feel are critical early intervention years.

2 - I have been told that the chance of having another child with autism increases by 20% if you already have a child with autism. People will say, "I know a family that has a bunch of children and only one has autism." I understand that as well.....and I know families with that same situation as well, but, again.....I am not a gambler. If we were to have another child with autism, of course we would love him/her. However, so much of my brain power & physical energy has been put towards understanding autism as well as Ethan's specific issues/personal therapies. I know that I wouldn't be able to give both children what they would need from me.

3 - We are content. Corey & I are head over heels for our Ethan! Neither of us feel as if we are missing something. We love our little family of three! We haven't had any difficulty getting rid of Ethan's baby stuff or missing the baby days. Honestly, we are glad they are behind us! So, even if Ethan hadn't been diagnosed with autism, we would still feel the same about having more children.

4 - Even though Ethan doesn't have any siblings living in his house, he has EIGHT COUSINS!!!! And they all live in the same town as us, and they all attend the same church as us! We are very fortunate to have a very close-knit, large family, and Ethan loves to play with his cousins. Recently, my only sister & her husband approached us with the idea of having me care for her 2 kids while they were at work. There were several reasons why it would work for them, but we all felt like the best reason of all was for Ethan to be able to have "siblings" around his house. This has been one of the best things for Ethan, and we are so lucky to have this opportunity.

Ethan is learning to share, his level of noise tolerance is getting better, and he is even learning to play with other kids. He is learning how to play simple games such as hide & seek, tag, and even simple turn taking games.....with his own peers & not mommy/daddy.

Every day after we (my niece, who is 18 months younger than Ethan, & myself) pick Ethan up from his PreSchool, when we get home & out of the van, Ethan will pick up one leaf & so will the little one. Then, I sing a silly song that I made up....."Ethan has a leaf & (my niece's name) has a leaf!" They think it's so funny......and I guess I am funny........to children under the age of 5! Then, knowing that they can't bring leaves in the house, they both....together.....throw the leaves back into the yard from our front porch....and then they come inside. I don't really know how this ritual started, but they do it everyday! Today, Ethan got out of the van first as I was unbuckling the little one from her car seat. Apparently, I was taking too long because Ethan brought a leaf over to us & handed it to his cousin.....and then started singing the song. Now, I know this is routine & Ethan loves routine, but what if we didn't have this cousin with us?!

Similarly, when we all take the oldest, who is 18 months older than Ethan, to his school (different from Ethan's) in the morning, the oldest & Ethan count to three & then say, "Pull!"......and pull open the doors to the school. Sometimes they even do this with the van doors. Again, what if we didn't have these kiddos for Ethan to play with everyday?! Ethan would not be getting as much peer interaction as he was prior to this new arrangement. Not only is Ethan with his peers at school for a couple of hours each day, but there are kiddos in our home for a big portion of his day. I think all of this has really helped Ethan's speech develop, his tolerance to noise/commotion grown, and definitely his interaction with others is getting so much better. So, to answer the question, no we are not going to have anymore kids. We already have NINE!!!!!!!!

Buying a jumbo box of goldfish crackers for kids snack = $6
Driving the kids to & from their schools = $30
Seeing the benefits of "siblings" = PRICELESS!!!!!!

Editing

One of my favorite TV shows is Everybody Loves Raymond. One particular episode, Raymond's brother is getting married for the second time, and during the wedding ceremony, when the preacher says, "Speak now or forever hold your peace," Raymond's mother stands up & makes a big speech. Of course everyone is shocked & appalled because of her actions & words. Later, at the wedding ceremony, Raymond is giving The Best Man speech, and he talks about editing. His advice is to edit out the bad memories of the day on their wedding video & keep the good ones. And I must say that lately I have found myself editing my writing.

Ethan is wonderful, and I love him so much. I don't ever want my writings, decisions, ignorance or fear to affect him negatively. I often think about how putting so much of our private life out for the world to learn & read about will effect him in the future. I don't want to do or write anything that will hurt him or embarrass him. I have also been very aware of who is reading this blog. Friends, family, teachers, organizations, etc. have told me that they are enjoying reading about a family learning to live with autism. So, I again find myself leaving things out of my writings as to not upset or offend anyone. And this has caused my outlet to no longer be my outlet. My free therapy has found a price. But, then I realized today, if I don't talk about the good and the bad events, I am really doing a disservice to not only myself, but to everyone. Learning to live with autism is NOT easy, and it takes more than a family unit to do so. Ethan has a FANTASTIC support system in place.....lots of loving family, a caring church family, a dynamite set of teachers & therapists.......and I need to be mom. This is my role in his life, and I need to do this role first.

Because of my background in education (and my type A personality), I tend to put pressure on myself to be the one to educate everyone else about Ethan. I think that I need to be the expert on Ethan & how to handle everything that comes with his autism diagnosis. But the truth is, I don't know everything. I am learning right along side of Ethan & his support system. I can share with others what I know & what I have learned, but I learn new stuff everyday. And then Ethan changes, and I have to do a TON more research in order to deal with his new issues. It's hard, but statistics consistently are showing that early intervention is the best thing for an autism diagnosis. So, no matter how hard it is, I will do EVERYTHING in my power to help my child. And, to be honest, I tend to feel like it is my sole responsibility....when in actuality that is NOT true. And I need to stop putting that kind of pressure on myself. Maybe it's a mom thing?

So, I promise to no longer edit myself. I would be doing a disservice to me & to anyone who is truly interested in our story. Now, I may not tell EVERY story about Ethan because some things need to remain private. But learning to live with autism has more than one tone. Yes, it is very rewarding, fun, exciting, and joyful. But it is also overwhelming, lonely, draining, and challenging. I apologize if some of my stories & thoughts tend to be sad or upsetting.....please don't read them if they bother you. But, in order to be the best mom I can be for Ethan & the best wife that I can be for Corey, I need my outlet. And this is it, baby!

The name of my blog is LEARNING to Live with Autism.......not Here is How to Live with Autism. And we are a work in progress over at our house. There is a song that I sing with Ethan, and maybe someday I will be able to sing it with him without having to swallow back tears....

HE'S STILL WORKING ON ME

He's still workin' on me
To make me what I ought to be
It took Him just a week to make the moon & the stars
the sun and the Earth and Jupiter and Mars
How loving and patient He must be
He's still workin' on me

There really ought to be
A sign upon my heart
Don't judge me yet, I'm an unfinished part
But I'll be perfect just according to His plan
Fashioned by the Master's loving hand

He's still workin' on me
To make me what I ought to be
It took Him just a week to make the moon & the stars
the sun and the Earth and Jupiter and Mars
How loving and patient He must be
He's still workin' on me

Vacation Bible School

So, this week is our church's VBS. I had signed up to help with crafts, and I realized that they were going to have an Early Childhood VBS....ages 3-5. Initially, I was excited! I can take Ethan with me!!!! YEAH!!!!

And then I thought about VBS.....loud music, cheering kids, lots of transitions...all things that Ethan struggles with, and my joy was instantly deflated. One more thing he can't do. Or could he??? This debate, could or couldn't he, went back & forth in my mind for more than a week. Finally, I decided against it. He will be starting preschool soon, and that will be enough of a challenge for him....let's pass on the VBS for this year. And we made the right decision.

But tonight, since I was kid-free, I was able to look around & observe the other 3-5 year olds. Several of them had their hands over their ears while the music was playing. Many of them were crying for their Mom or Dad.  LOTS of them had difficulty sitting in their pew & listening to the presentation. In my mind, my child sticks out like a sore thumb among his peers. But tonight as I watched those kids, I'm not sure Ethan would act all that different from the other children his age.

I think a lot of times, I am super paranoid that Ethan is going to be the ONLY child who needs extra time, extra care, extra help.....but tonight I realized that he's not the only one. They are so little. They all need someone to help them. And this evening, I was able to step out of my "autism bubble", and look around at the others....the others who are crying, screaming, & covering their ears. "Typical" kids. Then I had an "Ah-ha" moment.

My job is to help Ethan be as comfortable as he can be in new environments through social stories, studying pictures of places before we go, providing him with calming aids...........but I can't STOP him from being upset or afraid or nervous. He's a kid.....he's a human-being....and we all have these emotions. I can't stop it from happening, but I can help him. And I am realizing that when Ethan becomes upset or agitated with a "trigger", I see it as MY failure. I have failed to help him because he is having a meltdown. But, Jessica, meltdowns happen....with every kid. Imagine how much harder it would be for Ethan if I hadn't done all I had done for him....in whatever situation that might be. I can't PREVENT the emotion....I can only help him DEAL with it. And when he has meltdowns, it's not that I have failed him as his Mom.....it's because he is a 3 year old. He's a 3 year old, Jessica!

Who knew VBS would be so insightful & healing?! HA!