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!

Love in a Different Language

Love is…

Love is expressed in many different ways in our home. One of the very most important things to me is for both of our children to know how much we love them. It has not taken us long to realize that having a child with Autism means you have to think outside of the box sometimes…even when showing love. Sometimes you truly do have to learn Love in a Different Language.

Here are just a few ways we have learned to show love to our sweet boy…

1.      Love is- acknowledging his presence. We talk to Ezra just as if he were answering us back in complete sentences. We ask him how is day was at school and tell him how much we missed him while he was gone. He may not even be able to make eye contact…but I think he hears us and he knows when we don’t acknowledge him.

2.      Love is- spending hours sitting in the bathtub…with no water…in your clothes….just sitting…..just because. For some reason the bathtub is one of Ezra’s happy places. I think he likes it because it is an enclosed “snug” place. For whatever reason, Ezra is quite content to sit in the tub for long periods of time and instead of just letting him to it- we sit right there with him. I figure we might as well join in on some of the “quirky” things he likes to do instead of just leaving him in his own little world.

3.      Love is- singing the same songs or watching the same shows over and over and over again. If that’s what will bring a smile to my little man’s face, we are gonna rock that Veggie Tales CD till it won’t play anymore!

4.      Love is- accepting him and loving him for who he is right now…not who or what he may become later. There will always be a new great therapy that makes great promises for my child and his future. While I do strive to get Ezra all the help he might need, I want to always be sure to love him right where he is at. He may or may not develop some great talent or strength in a certain area, and that’s ok. I think he is pretty great just the way he is!

5.      Love is- displaying patience even when patience is running thin. There are days that are just hard. Very hard. I never want Ezra to feel as though I have lost my patience and am throwing in the towel for the moment. I firmly believe he can tell when I have started to lose my cool. When patience runs low, dig a little deeper.

6.      Love is- big bear hugs and letting Ezra run his fingers through my hair (even Oreo fingers J ).  Ezra shows love by unusually tight hugs and loves. He also loves for me to place my head in his lap while he runs his little fingers through my hair. I usually end up with punk-rocker style hair but it makes my boy happy and it fills my heart!

7.      Love is- driving around in the car just because your usually non-verbal child said “let’s go!”  So, you drive…and drive…and drive…and….

8.      Love is- Singing “The Ants Go Marching” at the top of your lungs, no matter where you are or who is watching, just to bring a smile to your child’s face. Really, you should try it! You will get some great looks from people!

9.      Love is- Ezra’s big sister driving him in her Power wheel’s car until the battery dies…because it make her baby brother smile. Even though she does not fully grasp Ezra’s disability, it is so important to her to make him feel included and to make him happy.

10.  Love is- never giving up. Ever. No matter what.

I am so very thankful the Lord has entrusted Ezra to me. I am so very thankful for the opportunity to learn how to Love in a Different Language!