One Hour and Fifteen Minutes

I don’t even care that today’s blog picture gives everyone a front row view of my double chin and big ol nostrils… Check out who’s sleeping in his momma’s arms! That’s right, it’s Ezra!

This past Monday, time stood still for one hour and fifteen minutes. For one hour and fifteen minutes, I barely breathed for fear of waking my baby and losing this precious moment that we had not shared in such a very long time. For one hour and fifteen minutes, I held my sleeping boy in my arms and prayed over him as I felt his little body slowly breathe in and out. He was relaxed, he had such a peaceful look on his face, he was comfortable, and he was in my arms. I cannot recall the last time my sweet boy fell asleep in my arms- it has been several years. Until this moment, I had not realized how hungry I was for this special kind of momma and baby connection with my little man.

Most children with Autism do not like to be touched and most do not like to snuggle. We are very blessed by the fact that our Ezra is a very affectionate little boy. Despite his Autism and Sensory Disorder, Ezra will give kisses and hugs to those he is very close to. Ezra likes to be tickled and he loves to share the rocking chair at home with his big sister. However, Ezra’s affections are always on his terms. If he is struggling on a particular day, he may or may not even acknowledge me let alone give me loves. The key is to always make yourself available and to wait patiently for him to come to you. This can be very hard as a parent. Often times my attempts to snuggle are met with him spitting in my face, screaming, ignoring, or pushing away. There is nothing more heartbreaking than feeling your child’s little hands pushing you away from them when you want so badly to be able to offer comfort and love.

 So, you learn to wait. You learn to wait and when your child comes to you, everything else gets put on hold. Suddenly, the task at hand is trivial in the light of whatever breakthrough occurred for your child to pursue you. You soak it up. You store this precious moment in your memory and hold on to it tightly, because you don’t know how long it might be until a moment like this will happen again.

That’s how I felt this past Monday. If you have read my blog post Talk About Us Behind Our Backs, then you know that Monday is the hardest day out of our week. Every Monday afternoon Ezra and I wait while Grace is at dance.  This past Monday, as we pulled up to the dance studio, I could tell that sitting in a waiting room for any length of time was not going to be successful. Ezra was tired and he was letting me know about it. So, we walked Grace in to dance and went back to the car. I set Ezra in my lap, turned on some light music, and said a prayer because I just knew that this was going to be a rough hour and fifteen minutes. As the music played, my sweet boy grew calm and still as he laid his head against my chest. Within a matter of minutes, he was snuggled into me and was in a deep sleep.

I’m not going to lie, I cried. I sat there in amazement as I thanked the Lord over and over for such a sweet moment. I had had a long day. I was weary. It was as if the Lord knew exactly what I needed. I was able to kiss the top of Ezra’s sweet little head and hold him tight for one hour and fifteen minutes! What a special moment! What a blessing! The Lord knows the deepest desires of our hearts. I am so thankful.

…and yes, I just HAD to capture the moment by taking a picture with my phone. If you are wondering why I did not smile for such a special picture, it is because I was literally petrified to move too much for fear of waking Ezra. I just knew he would sense me flexing my facial muscles and it would all be over. Therefore, you get the double-chin-and-up-the-nose view …super. Oh, but isn't he a sweetheart! Thank you Lord, for the gift of one hour and fifteen minutes!

Never take for granted your child's hugs and kisses. Never take for granted hearing their little voice calling "Momma Momma" over and over again. Sometimes we become numb to these things...maybe even agitated at times. Oh friends, cherish these moments! They are treasures we are not always guaranteed. They are precious gifts!

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Rapunzel and Pascal: Understanding Special Needs Siblings

 “Hey Mom, Ezra and I go to the same school! But Ezra rides on a little bus and you drop me off in the car. Did you know that I only have one teacher, but Ezra has a bunch of teachers? And did you know that I walk at school and Ezra rides in a red buggy? It’s like we’re the same, but different!  …Can I dress as Rapunzel for Fall Fest and can Ezra be Pascal? Cause He’s my lil buddy…”

This was the mostly one sided conversation I had this week while riding in the car with my five year old little girl, Grace, in regards to her brother. I kissed my sweet girl on the forehead as I pulled up to the school to let her out and watched as she bounced her way into the building. As I drove off, her words continued to play in my mind. Although said in complete innocence, my little girl’s words were very telling of how she is beginning to understand the differences between her and her little brother.

“It’s like we’re the same, but different!”  … Wow, very well said! Grace is very slowly beginning to understand more and more about her brother and this thing called Autism.

This has been an interesting process to watch. I know for myself, and for my husband, we are still figuring out life on the Autism journey. There have been feelings of grief and loneliness as well as feelings of great joy and thankfulness. So, can you possibly image how a young sibling would process the fact that their brother/sister has Autism?

A few weeks ago, I wrote a blog titled Talk About Us Behind Our Back. The idea behind the blog post was to encourage parents to explain to their children about special needs kids so that they might better understand how to treat them, react to them, and be their friend. I never dreamed that I would receive the response that I did. Remember, I asked you to talk behind our backs…but what I got were many emails, text messages, phone calls, and conversations. Most parents had the same question: What should I tell my kid about Autism? Or How should I go about explaining to my child about Ezra and kids like him?

Well, I’m no counselor and I am certainly no Autism expert. I am just a mom! But I would be happy to share with you what we have told Grace about her baby brother, Ezra.

Grace knows that her brother “struggles” sometimes. Grace knows that sometimes he acts differently, spits, has odd head movements, and very little language. These are all things that Grace has observed about Ezra. We have simply explained to her that -Yes, Ezra does act differently and he does struggle sometimes. We have also explained that it’s ok to be different and that God makes everyone very special and that He has a plan and a purpose for everyone no matter what. Yes, we have occasionally dropped the word “Autism” to Grace but you see, Autism is not who Ezra is, so we don’t really focus on this term with Grace as of yet. As Grace gets older, I expect for there to be harder questions and harder answers. From Grace’s astute observations in the car this past week, I can tell that she is putting the pieces together. She is gradually becoming aware of what it means to have a special needs sibling.

As Grace gets older, I watch her become more and more protective, understanding, and motherly in the way that she interacts with her brother. I often times have to remind her that she does not have to be the mommy or the therapist…just be the sister! I am thankful for the sweet heart that she has. She loves her “Ezra Brother” very much.

I ask the Lord often for wisdom and discernment when it comes to balancing a “neurotypical” child and a child with Autism. I want to explain things to Grace, but I do not want to overwhelm her. So, I concentrate most on helping Grace not to understand Autism, but to understand Ezra. I show her ways to connect with him, play with him, and love on him. I let her know that she is always welcome to ask questions. Questions are good. Questions breed knowledge, knowledge breeds understanding, and understanding dispels fear and brings forth relationship.

I will answer Grace’s questions as they come. In the meantime, I am interested in her innocent little observations. I am so thankful for the caring spirit she has with Ezra. I am thankful that she would even think to ask “Can I dress as Rapunzel for Fall Fest and can Ezra be Pascal? Cause He’s my lil buddy!” How cool is that?

Best Buddies waiting for Ezra's school bus!

Best Buddies waiting for Ezra's school bus!

All dressed up for Western Days at school last week! This was Ezra's first time to wear boots...he wasn't too sure about them!

All dressed up for Western Days at school last week! This was Ezra's first time to wear boots...he wasn't too sure about them!

Talk About Us Behind Our Back

I love to watch people. Not in a super-creepy-stalker kind of way, but I do love to observe people; how they relate to others, their mannerisms, and I like to ponder over what their story might be. Now that I have a child with special needs, I cannot help but carry this interest over into our own life. It is just a natural inclination of mine to watch. I watch how people look at my Autistic child, how they respond to him, ignore him, make faces over him, smile at him…there are so many different reactions. Some people’s reactions offer such comfort and put a smile in my heart. Other times, people’s reactions can leave me feeling very alone, very vulnerable, sometimes angry, and sometimes sad.

There is one particular day out of each week that is very hard. It’s the day that my little girl, Grace, goes to dance. So much of what our family does or doesn’t do revolves around Ezra. I wanted Grace to get to participate in one “something” that she would greatly enjoy that is just for her, and she chose dance! So, once a week, I pack Grace’s dance bag and then I pack Ezra’s survival bag for the Survival of the Dance Studio Waiting Room. I smile. I act excited. My excitement is for Grace. I want her to feel super special because this is her special day. Inside, my stomach churns because honestly, waiting rooms are a brutal place for my Autistic child.

First, in a waiting room, you must wait. Waiting is not yet a concept that my sweet boy fully understands. He may be able to wait for a very short time, but for an hour and fifteen minutes, it is a huge feat. Also, in this particular waiting room you have noise, it is very crowded, and there are lots of people. Let me tell you, this is the perfect set up for sensory overload! So, I pack Ezra’s survival bag each week and say a prayer over him as we take our little ballerina to her class. 

The owner of this dance studio has met Ezra and is so very gracious and understanding to our situation. We take up a good chunk of her waiting room each week. Ezra sits strapped into a stroller, we bring snacks, toys, a DVD player, and the IPAD. Sometimes I end up sitting on the waiting room floor with my head in Ezra’s lap. Sometimes Ezra spits on her floor. Sometimes Ezra chunks a train through the waiting room air…it’s never a dull moment, that’s for sure!

As I sit through these dance sessions, I watch people. You see, my child does not sit in a wheel chair. My child does not have braces on his legs or need special medical equipment. My child does not look any different from any other “typical” kid. That’s right; my child has an invisible disorder that is manifested through behavior. So, instead of people smiling and understandingly looking on, I usually am met with looks of disgust (why can’t that mom control her child?), disapproval (that child is out of control) and even just curiosity (what’s wrong with that kiddo?).

In my Survival of the Dance Studio Waiting Room saga, I have observed something very interesting: the younger children smile at Ezra, they watch his Thomas Train movie with him for a short time, they say “hi”, and they are very accepting. It is about half way through our waiting time that a group of older girls arrive for their class. What a difference there is! Don’t get me wrong, some of these girls have been very sweet, but many have snickered at Ezra’s odd head movements and many have made comments. One that I remember specifically came from the precious looking girl with the purple bow and braces, “That kid is weird!”  Not so precious. I believe I have mentioned before that I am used to comments by now (read  1 in 50: My Supermarket Story), but that doesn’t mean that they don’t sting a little.

After my dance studio observations, my question is this: At what age does this disconnect of acceptance happen? Is this a learned behavior from an adult figure? What are we teaching our children, not just by words, but by example?

I have conviction now more than ever to teach my own daughter to love and accept, to be nice to everyone, to include and not to exclude, to look past handicaps and to look straight to the heart of a person.

In fact, yesterday morning as I dropped Grace off at school, this was our conversation:

Me: “Grace, don’t forget to be nice to everyone!”

Grace: “I know momma!”

Me: “And if you see someone sitting alone….”

Grace: “I should ask them to come sit with me.”

Me: “And if other kids  are laughing at someone…”

Grace: “Don’t laugh and go be their friend. Momma, I know!”

Me: “Because God made everyone special and…”

Grace: “And he loves them very much!”

(Yes, thank you to Veggie Tales for that last bit!)

I don’t care if Grace gets tired of this. It is something that I teach her with a deep passion. It comes from a deeper passion than I ever had before I had my sweet Ezra. I know that I cannot just teach her in words, but I must teach her through my own actions.

What are you teaching your children? Do your actions display a different message than your words? Did you invest the time to teach your child these life lessons but as they have gotten older you have forgotten to remind them of such things?

It is so important. It is important to families like ours. It is important to children like my Ezra.

There is one particular little boy at our church, who is in Ezra’s Sunday School class, whose Mamma is teaching him about Ezra. She explains bits and pieces of my blog to him. She has told him that God makes everyone special and everyone different and that that’s ok. She asks me questions about Ezra so that she can better understand him, and she shares that information with her son. And you know what? Her son rocks! He takes such consideration of Ezra. He says “hi” to him, tries to share toys with him, obviously wants to understand him, and treats him as another classmate. I am so thankful for this sweet boy who treats Ezra like a friend, instead of ignoring, laughing, or making faces.

So, you have my permission to talk about our family! I truly believe that these inconsiderate “looks” and “comments” come from not knowing; from a lack of understanding. If you want to, tell your children about us. Tell them about Ezra. Help them to understand. You have my full permission to talk about us behind our back!

See Ezra's Smile! He loves to play with his big sister!

See Ezra's Smile! He loves to play with his big sister!

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!

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

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. 

This was our "happy" for the week.