Itsy Bitsy Triumphs

Autism. The hard times are extremely hard, but even the smallest of accomplishments are cause for such great joy and excitement. These accomplishments are usually things that most people would take for granted, but when you have a child with Autism, you learn very quickly to take nothing for granted.

Today I would like to celebrate a few of Ezra’s latest accomplishments. These are just a few of Ezra’s Itsy Bitsy Triumphs in the last month or so.

-          Bottoms Up! Ezra has started to lift his little hiney up when I am changing his diaper. This may seem like a very small thing but it is not. This is one more small step towards gaining independence and shows a developing awareness in Ezra that he has not shown before!

-          Lead the Way! It is more and more that Ezra will grab our hand and take us to something that he wants or needs. Being able to communicate wants and needs is a huge step.  We continue to pair words with these items and pray that he will make those connections and eventually use words to express his desires.

-          Walk with Me! “Flopping” is a term often used in the Autism community. Maybe you have seen “flopping” before and you just didn't know what it was. Ezra struggles with “flopping” quite a bit. He is not able to tell us when he does/does not want to go somewhere, when he is overwhelmed, or is experiencing sensory overload. Children with Autism often times struggle with transitions too. Without the words to express his distress, he will “flop” to the ground and will usually start to whine, cry, or scream. Yes, this is a real term. No, not every child that you see laying on the ground in public is a spoiled brat in need of a spanking… It was not until this year that Ezra was even able to walk holding hands. We had to carry him everywhere or have him strapped in a stroller if we were out of the house.  Ezra has come very very far. Yes, he still “flops” occasionally, but more often than not, we can grab his hand and say “Walk with me”…and he does!

-          Music to My Ears!  Ezra loves music. He has some pretty groovy dance moves too! Ezra has learned several more songs and he loves to dance around the house singing them. And of course, the sound of my precious boy singing just fills this momma’s heart until its overflowing! His new favorite “playlist” is the following: Everlasting God, You are Holy, the Thomas Train theme song, and the Itsy Bitsy Spider (yes, quite the variety)!

It’s good to celebrate these things! I do want to make this one point…Ezra may not make eye contact very often, he may rarely respond if you call his name, he may seem in his own world for a majority of the time, but he has not made these little “baby steps of progress” by chance. He is developing an awareness because we talk to him about EVERYTHING. He is learning to communicate because we push him. He has begun to walk properly because we are showing him how. He knows songs by heart because we have sung them to him.  

Do you know a child with Autism? Interrupt their world. Talk to them. Don’t ignore. Teach them. They may seem to be in their own world, but they are listening, they are taking it all in, and they truly are learning…they are learning from you!

Let me tell you, the hard times are extremely hard, but the victories are so very sweet!

Now, I would love to share a video of one of this weeks triumphs. We jam to a lot of different tunes in our house. However, The Itsy Bitsy Spider is not one of the songs that we have been singing. So, to Ezra’s school teacher…this one’s on you! Thank you for interrupting his world. You gave him a new song this week!

Autism Awareness Alert: Notice how Ezra keeps the beat with his legs and by clicking his tongue (his own “beat boxing”)! 

I Am Able

I believe we all have moments of weakness. Sometimes there are just days that we may feel like “throwing in the towel” or we may justify our “right” to throw ourselves a good ol pity party. Life is unpredictable, sometimes hard, and oftentimes messy.

When these “messy” days come, I like to think back to an old song that probably many of you know and it goes something like this… Count your blessings name them one by one, count your many blessings see what God has done!  It’s good to remember all the many ways that the Lord has blessed us, isn’t it? Our lives are messy because we are all imperfect, but it’s a beautiful mess. The Lord is truly gracious to us.

Another great “go to” thought I once learned is this: on those I –think –I-might-should-just-go-back-to-bed-and-start-over-tomorrow kind of days, to remind yourself “I AM ABLE.”  I learned this “I AM ABLE” idea from a Lisa TerKeurst bible study I once led. I love this idea! It gives such a wonderful perspective for this messy kind of life.

Well, last week was definitely a messy week.  My week first started off by quickly loading my kids into the car for school only to find that a sippy cup of milk had been left in the hot car all weekend long. Apparently some of the milk had leaked out onto the carpet, right underneath the driver’s seat, resulting in a horrid smell. I spent most of the week chauffeuring my family around to various activities with the windows rolled down, trying to air out the death-like odor that was seeping out from under my chair. I kept trying to remind myself of my little “go to” thought: “I AM ABLE”. I am able to drive, I am able to smell, I am able to own enough sippy cups that this particular cup was able to be missing for an entire weekend, I am able to buy milk, I am able to clean the carpet in my car, I am able to have a car in the first place…Yes, thank you Lord, for all these blessings!

The next day, I was folding laundry and feeling very good about my productive afternoon. The kids had had a great day at school, I had given them an after school snack, we had snuggled for a while, I had folded the laundry (left on top of my bed and still needed to put it away), and now the kids were playing while I began to cook dinner. My plan was to put away all of the laundry that was nicely folded on my bed, after dinner had been started. Then, I heard laughing. It was the kind of laugh that my sweet boy lets out when he is having one of his “Autism moments”. The only way I can describe this laugh would be: complete abandon. Its goes beyond silly. It is a very peculiar noise. It is the kind of laugh that does not signal regular “happy play”, but rather a very odd since of being detached from reality. I followed the laughing only to find every single article of clothing that I had folded to be put away, scattered all over the bedroom. There were socks hanging from fan blades, underwear on the curtains, t-shirts in the floor…it was a mess! I am able to fold laundry, I am able to have clothes, my child is able to throw, look at all these clothes that the Lord has provided for us!…Thank you Lord, for all these blessings!

Then, there was bath time. It was towards the end of a very messy week. I was tired. I ran the bathwater and put my sweet boy in to play. He loves bath time! It’s one of the happiest times in his day. Ezra loves to lie back in the water and feel the bath bubbles cover his skin. It’s a sensory thing! He played for quite a while and had a great time. When it was time to get out, I reached in to pick him up out of the water only to realize that beneath the bubble topped water, my little man had pooped. Gross!!! I disinfected the kid. I disinfected the tub. I am able to clean the tub, I am able to give my child a bath, I have running water, I have soap, my child has well-functioning bowels… who am I kidding? This is disgusting! I mean really, how much more messy can this week get? Can’t I catch a break? Ahhhhhhh!!!

That’s right. I was done. I was done with my messy week. It didn’t seem like a beautiful mess at all. It was smelly, gross, and messy. I felt completely justified in having at least a small pity party for myself. And I was pretty sure I was getting a head cold. What else could possibly happen?! 

Later that same night, our family sat on the couch together for our customary pre-bedtime snuggles. Grace was curled up in her daddy’s lap on one side of me and Ezra had actually climbed up in my lap and was snuggling me. He sort of shifted this way and that way until he was sitting with one leg on either side of me and we were nose to nose. And you know what? My three year old, mostly non-verbal, Autistic son looked me straight in the eyes and said, “Hi Momma!”

This is probably only about the fifth or sixth time I have ever heard him say my name.

I am able to hear my sweet baby’s voice, He was able to say my name, I am able to sit and hold my babies on my couch, I have a family, and I am able to care for my children. All these messes are evidence of a full home and a full heart. Even when life gets tough, I AM ABLE because You Lord, give me strength from day to day and You provide my every need.

Thank you Lord, for all these blessings! Thank you for my beautiful mess! Thank you that I AM ABLE! And thank you Lord, for the refreshed perspective.

I am able to have sweet moments like this with my precious little man!

The Monthly Lamp

I grew up in a three story Victorian home that was built in 1904. It was a beautiful home filled with antiques, stained glass, ornate wood, and lovely heirlooms…you know, the perfect house for five rowdy kiddos to grow up in!  Don’t get me wrong, between all of us children there were many plays, singing into kitchen utensils, and daring stunts down flights of stairs, but all within the walls of a museum-like, gorgeous home. Christian values were definitely taught and encouraged in our home. We were also taught an appreciation for fine things- and their “value”.

As I grew up, married, and began a family of my own, this carried over into my own household. I wanted everything to look nice. I wanted, as my Nana used to say, “A thing for every place, and a place for everything.”  I “took” to the decorating of my first home and enjoyed making everything look beautiful. And, truth be told, I probably placed a whole lot more value on all the “stuff” in my home than I should have. That’s the way of our culture nowadays isn’t it? You know, the whole Keeping Up with the Jones’ mentality?

But the Lord has a funny way of rearranging our hearts, if we allow Him to…and that’s just what He did. Through a series of moves and experiences, the Lord began to open my heart to a new way of thinking and a new value system when it comes to “things”.  I still love to decorate and I still love pretty things, but I certainly don’t have to have them to feel good about my family and our household and I no longer feel that they are necessities in life.

And then Ezra came. As our sweet baby grew and it became more and more apparent that he does in fact, have Autism, it also became apparent that the “pretty things” had to be put away. Here are two truths for you: Truth #1- our home is filled with much laughter, snuggles, singing, happiness, and love. Truth #2- our home is also filled with spitting, throwing, tearing, breaking, screaming, and hitting. It’s all part of this thing called Autism. It is now our way of life. Each day we work with Ezra to help him control his impulses and to teach him appropriate behaviors. He is learning more each day, but we still have a ways to go.

Upon moving back home to East Texas, we were given a beautiful red lamp with a burlap shade. I loved it! It looked perfect sitting on my end table right beside our couch…for about a week. Then, one day, Ezra was struggling and he pulled it down. Crash! Time for a new lamp.

Next was an iron-looking lamp. It looked sturdy. Surly it could withstand the forces of a three year old? And because our current living room is a tad on the dark side, and because I really like the subtle glow of a lamp in my living room, I plugged it in. Then, one day, Ezra was struggling and he threw a shoe at the lamp. Crash! Time for a new lamp.

You get the idea.

This happened several more times and became sort of a joke around our house. We would joke about the “monthly lamp” (don’t worry; we resorted to the $10 lamps from Wal-Mart a long time ago). I would like to insert this brag: Our current lamp has been around for at least three months now. Granted, you can only turn it on by plugging it into the wall because the button has long since been broken off and it has a few dents in it from Ezra’s toy trains.

But you know what? I wouldn’t have it any other way. The Lord has used my special boy to teach me so many things. Having a child with Autism has certainly given me a new perspective on life, love, and priorities. I now place much more value on the eternal rather than the temporary.

Having a child with Autism does not make for a home that is flashy, fluffy, or fancy. If you come to our house, most of the “pretty things” are still put away. Our home is not full of such things…but it does have two beautiful children who fill this momma’s heart until it is overflowing.

Yes, I have exquisite treasures in my home- they are kisses, tight hugs, finger painted works of art, little voices that call me "Momma", and sounds of rejoicing over even the smallest of their accomplishments.   And, it does have this month’s lamp in it!

I am so thankful that the Lord has a way of rearranging our hearts and of teaching us what’s most important, aren’t you?

“So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.” 2 Corinthians 4:18

"Do not store up for yourselves treasures on earth, where moths and vermin destroy, and where thieves break in and steal. But store up for yourselves treasures in heaven, where moths and vermin do not destroy, and where thieves do not break in and steal. For where your treasure is, there your heart will be also." Matthew 6:19-21

Ezra, This Month's Lamp, and I

The Reminder

I want very much for my blog to offer encouragement to others. I also want to offer true understanding and insight into the life of a family with a Special Needs child.  With that being said, today I am allowing myself to be just a bit more vulnerable. Today I am allowing myself to confess to you that some days are just very hard. Not hard as in I-may-shed-one-glistening-tear hard, but more like I’m- going-to-do-the-ugly-cry-into-my-pillow-all-night-long-and-wake-up-with-racoon-eyes-for-work-the-next-morning hard.

Today’s topic came to light after one of my Love In a Different Language-reading-friends recently made this comment to me “I love reading your blog! You offer so much encouragement! You really seem to have a handle on life with Autism!”   Whoa.

First, I am so glad to know that someone besides my mom reads my blog! Secondly, I am so glad that my blog-reading-friend found encouragement in reading it. There are so many sweet ways that the Lord offers me encouragement on this journey of Autism and I love to be able to share that with others. However, I will admit to you that I certainly do not have a “handle on life with Autism.”

What I do have a handle on is this truth: I will NOT make it through this Autism journey without the help of my Jesus. Plain and simple.  And that, my friends, is because it can be hard. Very hard.

This past week was a very real reminder that life with Autism can be very unpredictable and challenging. Ezra had a rough week. A family member was sick and with all the back and forth visits to the hospital and interrupted schedule, Ezra struggled. What does it look like for a child with Autism to “struggle”? Well, for Ezra it means any combination of the following: screaming, crying, aggression, constant movement (as if he is on fire in his own skin), wants comfort but can’t stand to touch, touches but can’t control impulse to hit, spitting, throwing….it really just depends on the day.

Other moms who are further down this journey of having a child with Autism have told me that the first five years are without a doubt the hardest. I imagine that is probably right. You see, with a little one, you are starting from scratch. You have to find out what their “triggers” are. You have to discover what works to help pull them out of these “Autism meltdowns”.  And no two kiddos are the same! I have heard it said that “Once you’ve met one person with Autism, you’ve met one person with Autism.”  How very true. What works for my Ezra may or may not work for the next child with Autism. Therefore, life as my family knows it often times turns into a constant game of trial and error. I know this trial and error way of life will not last forever as we are little by little figuring out what “works” for our sweet boy.

I will tell you that there are many feelings of helplessness.  This past week, that is how I felt. Because I watched my baby struggle as I tried one thing after the other to try to comfort him, and nothing helped. We just had to wait patiently for about a full week for him to wake up “clear” and happy again.

I will tell you that there are many feelings of being alone. This is certainly not a ploy to achieve the highest level of Facebook friends or to beg for an invitation to your home for dinner. I’m just being honest. It is lonely. Yes, we are unable to go and do as others are able to go and do. And yes, some of our friends and even some family members feel “uncomfortable” around Ezra and keep their distance. But that’s not really even the kind of “lonely” that I’m talking about.  

This feeling of loneliness can come in even a large room full of sweet friends and loving family. It’s the kind of lonely that comes from feeling that there are very few who would or could understand your family and why you do the things you do, act the way you act, discipline the way you discipline, and how this thing called Autism effects every aspect of who you are. It’s the kind of lonely that comes from worrying: will he have a meltdown? Will he get upset? What is my plan if X happens? What is my plan if Z happens? And even if he IS having a good day- what if something sets him off?   This was a lonely week.

Please do not for one minute think that it is all heartache all of the time. On the contrary, I feel so very blessed to have been chosen to walk this journey with my sweet baby. There are so many wonderful and precious moments that I will forever treasure. The days when we “struggle” make the good days that much sweeter. I truly believe that parenting is a calling and I also believe that God equips the called! I do not take for granted the fact that God chose me to be Ezra’s mommy. I trust that He will equip me to be the best mom for Ezra that I can possibly be.

Yes, it is hard. No, I do not have a “handle” on life with Autism.  There is a lot I do not know and there are a great number of struggles that I could share with you. But don’t we all struggle from time to time? You may not be facing the same struggles I am, but I would venture to guess that you have a set of struggles all your own.

I will tell you that there is no way I could make it through this Autism journey without my dependence on the Lord. He is my source of strength. He is my source of joy. He continues to reveal Himself to me in sweet ways throughout the good days and bad.

Even this past week, in the midst of a very rough time, the Lord gave me such a special verse. “My ears had heard of you but now my eyes have seen you” Job 42:5. This verse spoke straight to my heart. This is my prayer for myself. I don’t want to just “hear” about the Lord and how awesome He is from other people. I want to experience and “see” it for myself on a day to day basis. I hunger for that. I need that. THAT is how I make it through this thing called Autism.

It is my prayer that through it all, good times and bad, that the Lord would continue to reveal Himself to me. I pray that I will “see” His grace, His love, and His mercy carry me through even the toughest of days.

It’s true. There is a lot of laughter, many tears, and much love in our home. It’s not always easy. But I am so thankful that “The Lord is close to the brokenhearted and saves those who are crushed in spirit” Psalm 34:18. I needed to be reminded of that this week. Maybe you did to?

This was our "happy" for the week.