Now You Hear Me, Now You Don't

“Goodnight Momma.” These words spoken by my little boy seemed to roll of his tongue so naturally. For a split second, it was almost as if a thick fog had been lifted off of him and he was able to clearly articulate his thoughts. For a moment, time stood still as I lay beside my little one thinking Did he really just say what I think I heard him say?

When children say something for the first time or have a huge breakthrough, the natural instinct of a parent is to cheer, clap their hands, or offer up a “Yay! You said ‘Goodnight Momma’! Way to go Ezra!” But I know better. I know that the best response for my sweet boy (Who has Autism) is to stay very calm and very quiet. So I laid there and softly whispered “Goodnight Ezra. I love you so much.” Of course internally, my heart was racing and the sound of my child’s sweet voice brought tears to my eyes. What a precious moment!

You see, I know and understand the great value of these words. These words were fought for. These words overcame the struggle of communication that battles on inside my precious son.  These words are never to be taken lightly. These words also let me know that he understands “Nighttime”. These words let me know that Ezra knows my name. These words are precious. These words are rare.

I treasure moments like these and hang on to them tightly. Because the nature of Autism is that inevitably, the fog will settle on my little boy once more and the fight for words or communication of any sort will continue. This isn’t like a neurotypical child who crosses a developmental milestone and is able to repeatedly progress in that area. For my sweet boy, it may be weeks, months, or even years before I hear these sweet words again. I know they are locked away somewhere inside of him.

So what’s a parent like me to do? Well, I speak Ezra’s lingo. Every night when I lay down and snuggle my baby boy I pray over him, tell him how much I love him, let him know how proud of him I am, and I say “Goodnight Ezra.”  During the day I talk to Ezra about everything. I tell him about my day, I ask him about his day, I tell him where we are going and what we are doing. I speak to him just like speak to my daughter, Grace. I give him words in hopes that he is taking it all in, storing it away in his little memory bank, and that he might be able to break through the fog of Autism and communicate once more.

I think one of the hardest questions is “How many words does your child have?” I can’t tell you how many times I have had to answer this question. They ask it at the doctor’s office, the therapists ask it, the school asks it, the service coordinators ask it…I could go on. And the truth of the matter is that I have no idea. There are words that Ezra has used more regularly that demonstrate comprehension, there is something called “scripting” that is very common with children who have Autism (where they script words that they have heard but it does not demonstrate comprehension at all), there is jabbering, echolalia, noises, and all sorts of other “terms” that are part of Ezra’s communication “skills”. I do believe Ezra knows much more than he is able to communicate. There is a lot that goes on in that little mind of his. I’m in no place to put a number on it…but I can tell you that it is such a sweet victory when he is able to bring a word out of his little mental file and express it. I pray that this will happen more and more for him.

Until then, I wait. I wait and I cherish every breakthrough and every little triumph. Can I tell you something? I’m sure that I’m a little bias, but Ezra has such a sweet little voice. Its soft, a little high pitched, and absolutely adorable! I am so thankful for sweet moments with my little man. I am so thankful for breakthroughs like this. Autism is definitely not for the faint of heart. Precious breakthroughs like this offer hope and joy to a momma like me! 

Happy Thanksgiving

Happy turkey eating, blessing counting, family loving, prayer giving, kids playing, leaf jumping Thanksgiving day! 

A Different Kind of Thankful

It’s that time of year…Facebook pages are filled with daily “thankful for” lines, children are coerced into saying crazy things like “I’m thankful my mom makes me eat asparagus”, there are thanksgiving programs, thanksgiving dinners, thanksgiving songs, and thanksgiving prayers.  This is a season to reflect on all the many blessings the Lord has given us. It’s a great season.

I have so much to be thankful for. The Lord has blessed me and my family in so many ways. As I have reflected on all these blessings, my heart is overwhelmed by God's goodness. At the same time, my heart is heavy for those who find themselves in the midst of a storm. You see, if you are in the midst of a storm and its Thanksgiving, there is almost a resentment that can build up in your heart. How do I know? Because this time last year, I believe that’s where I was at.

This time last year I struggled to find true thankfulness (or contentment) for the place we found our family in. Yes I was thankful that our needs were being met, yes I was thankful for family and friends, yes I knew that God was in control and that He had a plan, yes there were a great many things that I had to be truly thankful for, but for some reason the weight of my son’s diagnosis of Autism loomed like a heavy fog that I could just not break free from. Most of this was a fog of fear. Ezra’s diagnosis had not come as a surprise to us. I had known early on that something was “different” about my sweet boy. But last year the fear of the unknown and the severity of my child’s diagnosis began to set in. I was still able to find joy in life but there was just a sadness in my heart for my sweet child. The realization began to set in that this was not an illness to be cured with an antibiotic, I could not put a band aide on this or kiss it and make it all better. This time last year, I carried a heaviness and I certainly was not at the place to be thankful for any of it.

I am so thankful that the Lord does not leave us in these dark places. I can tell you now that I am thankful for the storm. It's a different kind of thankful. This year, I am able to say that I am genuinely thankful for the place we find our family in. You know what? Nothing has really changed. Ezra still struggles and there is still no magic cure for Autism. The only thing that has changed is my heart. So, (since I did not participate in the daily “I’m thankful for” lines on Facebook) here are just a few of the things that I am thankful for:

-I am thankful for a deeper faith produced by depending on the Lord for so many things.

-I am thankful for Ezra and how his life has completely changed our outlook on life, love, and what is most important.

- I am thankful for a love that needs no words.

- I am thankful for the good days. They are so sweet, so precious, such treasures.

- I am thankful for the bad days. They have taught me to find a strength I didn't know I had. Without them, the good days wouldn't be as sweet.

-I am thankful for deep hugs.

-I am thankful to have a daughter who is one of the most compassionate people I have ever known. She is such a precious gift.

- I am thankful to have a family that finds strength in the Lord and in each other.

- I am thankful for the opportunity to learn how to Love in a Different Language.

- I am thankful for the family and friends that have never left our side. Even though our lifestyle may look different from most, they have continued to cover us in their love and support. 

- I am thankful that the Lord holds me in the palm of His hands. I am never alone-even in the storm. Thank you Jesus!

I pray your hearts are full this Thanksgiving, but if you find yourself in the midst on the storm, hold on! The Lord is merciful, the Lord is mighty, He has a plan, and He never leaves us on our own. I pray that one day, you too will be able to look back and be thankful for the storm- its a different kind of thankful. 

Lord, how can I keep from singing your praise?!  Thank you!

One of Those Days

This last Sunday, Ezra struggled. It was as if he was on fire in his own skin. There was little we could do that offered him comfort or calmed him. I have no idea what caused him to have such a hard day. It could have been a number of things…change in the weather, maybe he didn't sleep well the night before, maybe there was a noise that set him off, it’s possible that the tag in his shirt could have been bothering him, the list could go on and on. Many times we are left with no explanation for why he has had a good day or a bad day. Last Sunday was just “one of those days”.

After a full day of spitting, crying, throwing, hitting walls, and writhing on the floor, Ezra ended his day by getting a hold of my dinner glass and throwing it onto the ground where it broken into pieces. I honestly don’t even know if he realized what he had done. I’m not sure that he even noticed me when I corrected his behavior. He seemed as though he was in another world; completely detached from the reality of things around him.

His daddy very tenderly picked him up from his highchair and carried him to his room. He helped Ezra into his pajamas and laid him in bed. Jake laid with Ezra, prayed over him and told him how much he loved him as Ezra continued in his detached-from-reality struggle. And then, Jake zipped Ezra’s bed close and shut the bedroom door behind him. (Ezra sleeps in a special bed designed for children with Autism) Ezra was asleep within minutes. He was a tired little man.

As Jake came back out to the kitchen, I was quietly cleaning up the little shards of glass that covered the kitchen floor as I listened to Grace (my daughter) chatter on about a story from school. The glass went into the trashcan, we put Grace to bed, and we set down on our couch to finally catch a deep breath after a very long day. This is just a part of our everyday life. Not every day is this hard. This past Sunday was just “one of those days”.

Have you ever had “one of those days”?  I’m sure you have. Maybe your “one of those days” doesn't look quite like mine, but we all have days that are hard. For me, it’s what I do about “one of those days” that makes all the difference.

Let me explain. I have learned that you can have “one of those days” that causes you to not want to get out of bed to face another day. Sometimes the struggle of a situation can cause you to want to shut the world away. A common tendency is to instantly begin building walls of protection around ourselves when we have “one of those days”. Throw in a disgruntled attitude with a dash of sadness and maybe even a pinch of self-pity and you get a recipe of allowing yourself to sink deeper and deeper into the gloom of “one of those days.” It is easy for me to do this. Maybe it’s easy for you to?

Here’s the deal. Life is hard. It just is. When we depend on our own strength and resources to survive “one of those days”, we walk away with a little piece of sadness and exhaustion each time. If we continue to depend on our own strength for “one of those days” it is possible to find ourselves in a self-made pit of despair. I can’t go there. I don’t want to go there.

So, what if having “one of those days” meant that it was an opportunity to depend on the Lord more? He is able, friends. What if having “one of those days” meant that I would be in constant communication with the Lord, presenting my requests to Him (Philippians 4:6) and asking for His wisdom (James 1:5)? What if having “one of those days” meant that I ask Him for His peace that surpasses all understanding (Philippians 4:7)? What if all the trails and hardships of having “one of those days” brought me closer to the feet of Jesus? There is peace there. There is rest there.

When my sweet baby boy is writhing on the floor as if in pain, it is the Lord that I cry out to. When Ezra is in a disconnected struggle that I cannot help him to break free from, it is the Lord that offers me peace. When things just seem to be falling apart, when the check book just doesn't add up, when there is sickness, when there is sadness, when I am having “one of those days”, I no longer lean on my own strength. I do not have what it takes. That friends, is because the Lord designed each one of us with a need in our lives that only He can fill.

I hope you are having a great day today. But if you seem to be having “one of those days”, may it become “one of those days” that you run to Jesus. May it be an opportunity to grow in your faith, depend on Him more, and may He shower you with his peace and His grace. He loves you. He longs for us, His children, to run to Him when we are having “one of those days.”

“I love the Lord, for he heard my voice; he heard my cry for mercy. Because he turned his ear to me, I will call on him as long as I live.”   Psalm 116:1-2

Stop, Drop, and Play!

How do you make a connection to a child that does not talk? What about a child that will not look you in the eyes? How do you connect with a child that cannot always tolerate being touched? These are questions that my family has had to wrestle with.

Every child is different. There is a reason for the term “Autism Spectrum”. Autism covers a very broad range of things. You may have heard the quote “Once you have met one child with Autism, you have met one child with Autism.” How true!

Doctors have told us that our son has “severe” Autism. Whatever that means? But, instead of focusing on how severe, not severe, or where on the spectrum our child might be, we just focus on our child. Autism is not who Ezra is. We focus on capturing the heart of our little man.

This is easier said than done. I cannot connect with Ezra the way that I do with our daughter, Grace. We have had to learn how to Love in a Different Language.

I can tell you this, you will not make a connection with Ezra by standing over him, sitting in a chair above him, or from calling his name from across the room. If you sincerely want to connect, you need to stop, drop, and play!

Try to get into his world. Do not expect him to get into yours. Make yourself available. Do not expect him to seek you out. Try to be open and go-with-the-flow.  Do not have preconceived ideas about what this connection should look like.  Sit patiently and wait. Do not push yourself into his play. (Even if he NEVER makes eye contact with you, he KNOWS that you are there.) You will build a connection simply by sitting quietly near him and patiently making yourself available.

In a way, it really is the most simplistic of ways to connect that reaches Ezra. So many children want to be entertained. Many adults feel the pressure of competing against the gadgets and things that hold their children’s attention and interest. With Ezra, there is none of that. Come in your sweats, come without an agenda, come with no makeup, come without the biggest and newest toy. There are no prejudices here. Come wait patiently, come wait quietly, make yourself available, watch his mind at work, study what he is studying, and stop, drop, and play!

…and if you patiently pursue him, you will make a connection.

Rapunzel and Pascal Part 2

A few weeks ago my little girl, Grace, asked if she could dress as Rapunzel for Fall Fest this year. (Check out Rapunzel and Pascal: Understanding Special Needs Siblings) She also asked if her little brother, Ezra, could dress as Pascal because “he’s my little buddy!” Of course, we could not say no to this sweet idea! I felt that for my little girl’s young age, this idea was quite perceptive on her part.

Pascal was Rapunzel’s best bud. They went everywhere together. And even though they didn't even speak the same language, they were somehow able to communicate and love each other’s company. What true picture of Grace and Ezra’s relationship!

So, this year we were accompanied to Fall Fest by two cuties dressed as Rapunzel and Pascal! I will let you in on just a few “Autism Alerts”. Fall Fest is by no means an “Autistic Friendly” event. Itchy costumes, large crowds, and lots of noise all contribute to a sensory overload. We took Ezra in his special chair- this chair is a comfort to him and helps him to feel secure. I was very unsure about how to make a Pascal costume that wouldn't overwhelm Ezra. Because of his sensory issues, Ezra does not like anything to be on his head or touching his ears…so, we just tried our best. He actually kept his hat on for a short time-at least long enough to snap some pictures so we could show you all how un-thrilled he was about all of the festivities. Overall, he did really well and we were able to be a part of something fun as a family!

Ezra leaned over at just the right time! He really does look like a little Pascal! 

Rapunzel and Pascal

Arriving at Fall Fest! Ezra was...thrilled. Lol!

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!

Silos and Fabulous Shoes: The Loneliness of a Cookie Cutter Culture

 I have thought a lot over the last few weeks about an epidemic that I believe is taking our culture by storm-Loneliness. We have our “Pinterest Perfect Pictures” and our “Flawless Facebook Fairy tales” that are flashed before our eyes as the golden standard for living. And even though I believe most of us realize that these are not all attainable or “must haves” for our lives, they somehow still have the power over us to make us feel less. We text instead of talking-it’s more convenient and more direct; you can cut out the “fluff” and get to the point. We live in a world of fast pace and instant gratification.

Please do not shut me out. This is not one of those “let’s all go live on a mountain and eat nuts and berries” kind of blog posts. I love Pinterest and I’m on Facebook. I text probably just as must as the next gal and my schedule is jam packed with events. But I have been wondering how much all of these things contribute to the fact that in one way or the other, many of us feel lonely.

It is so very easy for the people living in today’s culture to lose their authenticity. It’s much easier to put our mask on every day as we walk out the door and to act as though we've got it all together. And even though very few, if any of us, actually fit into these cookie cutter lifestyles, we want so very much to act as though we do.

I would compare it to a lady buying a fabulous pair of shoes… The shoes are gorgeous. They are the shoes that everyone wants. Surely everyone will be envious of this pair of shoes. The only problem is that they are two sizes too small. So, this lady hobbles around in her gorgeous-too-small- for-me shoes, as she smiles and welcomes everyone’s admiration. But here’s the deal: she is in pain. She is rubbing blisters. And every night before she goes to bed she must soak her sore feet in warm water and put Band-Aids on them before she slips her tired, worn out feet under the covers to rest. And the next day, she does it all again.

I wonder how many of us do this with our hearts? I wonder how many of us are walking around with Band-Aids on our hearts because we feel we have to, or we must act as though we've got it all together.

You see, a mom crying over her special needs child and his struggles is not a very “Pinterest Pretty” thing. What about the single parent? The divorced parent? The couple having marital problems? The couple that has just lost their baby? The man struggling with depression? …the list could go on and on and none of these are “Facebook Fairy tales” but each of them are very real and happen every day.  It seems that we live in our own lonely silos believing that no one on the outside would or could understand what we are facing.

Many of us have a true failure to connect. We stuff our lives and true feelings way down deep inside because that’s what society has taught us to do. We have more connection to a social media site or a television show than we do to actual people. And then, we wonder why we feel lonely.

If only we could spark a generation of authenticity. This is something the Lord has laid heavily upon my heart. I do not have to have it all together nor must I fit into a cultural cookie cutter.

Having a son with Autism has definitely helped to open my eyes to the freedom that can be found when you toss out whatever your “perceived normal” is and embrace the life the Lord has gifted you with-the good and the hard times. I try not to worry about what everyone else’s six year old is doing or what great milestones they have achieved. For my child, every step taken independently is a victory, every word spoken is music to my ears, and every time he is able to bring himself to look me in the eyes, my heart melts.

I don’t mind telling you that it is very hard. I don’t mind telling you that there are nights that my husband and I sit on our couch and cry because we have watched our child struggle all evening. I don’t mind telling you that most days my house looks like a tornado has run through it because, well, that’s just the least of my concerns right now. I don’t mind telling you that the ONLY way I make it through each day is by finding my strength in the Lord- because I don’t have it in me to do all this alone. And do you know what? Something about being able to come to grips with this and toss out the cookie cutter lifestyle is quite liberating.

Let’s just get honest. When we take off our masks and get real with one another, that’s when we can build authentic relationships. No, I am not trying to encourage that we walk around airing our dirty laundry with whomever we meet or having a “woe is me” attitude. What I do want, is for us to no longer feel it necessary to live in our own little silos of life, feeling lonely, and only coming out when we feel we might be able to produce the very best “canned version” of ourselves, based on what the world says is acceptable. I fear that far too many of us are putting Band-Aids over all our wounds in order to achieve a false fairy tale front that will only result in loneliness.  

By the way, I’m also not necessarily trying to encourage a “fast from Facebook” or a “pilgrimage away from Pinterest”, but it is good to have a reminder that no one is perfect.  We are all imperfect. We all are in desperate need grace. None of us have it all together.  Isn't that refreshing to remember? 

So, go out to lunch with your friend. Have a real conversation. Talk about real things. Remind them that they are not alone. Instead of judgment, let’s offer love covered in grace. Let’s do life with one another! Let us safeguard one another from the epidemic of loneliness. Let’s be authentic!

"But if we walk in the light, as he is in the light, we have fellowship with one another, and the blood of Jesus, his Son, purifies us from all sin."         1 John 1:7

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!

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!

Thirsty

Jesus has a history of using those who most would consider “unusable” or “less likely to succeed”. I love that about my Jesus. He creates everyone with purpose and all of us have the opportunity to be used by Him to do great and wonderful things- even a child who has Autism.

I would spend a very long time if I were to list all the many ways that the Lord has used Ezra (my little boy who has Autism) in my life and in the life of our family. The Lord uses Ezra to constantly teach me things about love, life, and priorities. Because of Ezra, and the Lord allowing him to have Autism, my faith has grown stronger and I have learned in a very real way what it means to lean on the Lord completely as my source of strength. The Lord is always teaching me things through the life of my special needs child.

Last Saturday was no exception. Our family was scrambling to get out the door. Jake was going to help and friend with some yard work, Grace was going to a birthday party, Ezra was going to his “Lolly’s” house to play, and I was the chauffeur for the day. As we all hurried to get ready for our busy Saturday morning, I noticed that Ezra was struggling with something. I had made him juice that morning inside the blue Sippy cup with faded pictures on the side of it. (Something you should know about my little man is that he is VERY particular about the kind of cup he drinks out of. He can be so extremely thirsty, but if the drink is inside of a cup that is different, has a different kind of lid than what he is used to, or has a design that he is unfamiliar with, he will have a strong aversion for it to the point of not being able to drink, despite his extreme thirst. Yes, this is just all part of Autism) I gave Ezra this reject, faded Sippy because, well, that’s the only one that was clean (Maybe he won’t notice, right?).

So, on the coffee table this cup of juice sat, as I watched my little boy pace back and forth, trying to decide if he could bring himself to drink from this faded cup. I watched as he ran to the kitchen and brought out a couple of water bottles. He tried to open them and gave up quickly. He ran back to the cup of juice and stared at it for a while. He could not bring himself to drink.  He was becoming frustrated.  Next, he saw his sister’s cup. He immediately ran over and took a big gulp of her drink, but it was milk and he doesn’t really like milk, so he threw the cup down and began to cry. Then, it was back to the water bottles, but after a short time, he had given up again. Now he was in tears even though he knew exactly where he could get the drink he so desired. He just could not do it.

I went to the kitchen and began to wash a more “Ezra approved” cup so that my upset and thirsty little boy could have a drink. As I was washing this cup, I had a little check in my spirit. I do this too! So many times I am thirsty. I am thirsty for love, thirsty for acceptance, thirsty for peace, and thirsty for fulfillment. I busily rush around trying to “drink” from different people, places, and things that might fill me up and satisfy the desires of my heart.  All the while, Jesus is there offering me that love, acceptance, peace, and fulfillment that I so desire to have.  Just like Ezra’s juice cup, I know the Lord is there and I know what He has to offer. Why in the world is it then that I seem to run to Him as a last resort; when I am parched and exhausted from trying to “drink” from the world and what it has to offer?

I handed Ezra the “approved” juice cup. He drank and drank and drank. He was a thirsty little guy! Maybe someday we will help Ezra to be able to drink from various cups. For now, that’s just not on our radar. We have more important things to worry about like talking, playing appropriately, self-feeding, walking appropriately, etc.

As for me, I am so thankful that the Lord uses my sweet boy to teach me and to remind me of my need for time spent with my Heavenly Father. He fills my cup! I need to spend a lot less time running from one source to the other, looking for fulfillment. The Lord is my all in all. He is my source of strength. He fills me up!

Thank you Lord, for the great many ways that you use my sweet boy to draw me nearer to You. Thank you that You alone offer lasting and unconditional love, acceptance, peace, and fulfillment. May I drink deeply!

 “Whoever believes in me, as Scripture has said, rivers of living water will flow from within them.”    - John 7:38

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!

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!

August was a Doozy

One of the conclusions that I have come to as a special needs mom is this: August stinks! Plain and simple. August is a busy time for all parents with last minute vacations, buying school supplies, school registration, meet the teacher, Sunday School promotion, the list goes on and on. You see, I’m one of those “regular” moms too. I have a beautiful (neurotypical) five year old that I had the awesome privilege of doing all these Month of August Milestones with. She was so excited about it all and we had a blast!

August is a month of change. Change can be hard for anyone, but especially for a family with a special needs child.

You see, I am also the mom of a special needs child. To say that change is hard for my sweet little boy who has Autism would be an understatement. Typically, children who are “on the spectrum” require stability, strict schedules, and structure…none of which includes change. Change initiates a whole new realm of sights, sounds, smells, and people to get used to. Change initiates SENSORY OVERLOAD.

 As a mom of a special needs child, besides the before mentioned “typical” Month of August Milestones that we attempt or even “stumble through” with our special needs children, there are some other milestones that we must face each August as well.

Here are just a few of the Special Needs Month of August Milestones we have encountered:

-ARD meetings: (Special Ed meetings with the school regarding the services our child will be offered) Thankfully, we have group of school staff that has been more than willing to give our child as much help as they possibly can, that has worked with us, and listened to us. This is not always the case with every special needs family in every school district. I have heard many heartbroken parents re-tell how they must go in “fighting” for their child to have services and to receive help that he/she needs. Their confidence in their child’s educators is diminished by the school’s lack of special needs advocacy.

- Paper work/Assessments/ Evaluations: You must understand that the amount of paper work that a parent must constantly fill out on their special needs child is extensive to say the least. Last week I completed a packet that took all of two and a half hours. Paperwork is a necessary factor in our situation that I am neither griping nor complaining about…but it’s the content of this paperwork that stings. This paper work is a very real reminder of your child’s delays, digression, and lack of progression. It sparks questions in your mind that you hadn't even thought of yet: I didn't even think about THAT behavior becoming an issue. Is that something my child is going to struggle with in the future?  It require us parents to answer tough questions like having to circle the answer  Other children consider my child different or Yes, my child has odd behaviors. And even though us special needs parents are very aware of our child’s disability and love our children so very much just as they are- it hurts. Yes, August brings the opening up of old wounds.

- New Programs (church or extracurricular activities): Each August brings an array of new coaches, therapist, Sunday School classrooms/teachers, etc. All the time you spent last year helping these people to know, understand, and love your child begins all over again with a new set of faces. This is something I have learned- people can love to work with children, but that does not necessarily mean that they love to/or feel comfortable with working with special needs children. And so this balance of personalities, feelings, and passions begins to intertwine. As the parent, you hope and pray that these new set of faces will fall in love with your child, just as you have (and as you are praying, your child is spitting all over everything or throwing wood-chips across the playground). You pray that these adults will allow themselves to be stretched and to be willing to love, nurture, and teach outside of what is considered “normal”.

Compile all of these things within the context of the “typical” Moth of August Milestones that our special needs children struggle through as it is, and it can be quite an overwhelming feat.

So, back to my original comment: August stinks!

I am sharing all this to say: If you know a special needs parent, go give them a high five, a “way to go”, or maybe even just a big ol hug. Because chances are they have been very depleted this past month. Chances are they have gotten very little sleep as they have stayed up with their sweet child throughout the night (because that’s what change does to our children). Chances are their mind keeps flashing back to the judgmental glances of others as their child laid sprawled out on the floor in the hallway because they knew this wasn't their classroom from last year, this is a new classroom. Chances are they have had a lump in the back of their throat much of the time, as they have had to “fight” for their child-for their child to be included, accepted, to receive help, and to be given a chance. Chances are they feel misunderstood because they have been operating on their last delicate nerve from all that August had to offer. 

As August has come and gone, families like ours will still take a while to get used to the Back to School daily grind. Oh sweet friends, please find understanding in your heart for our little ones. They are having to adjust to so many new things right now- things that the rest of don’t even think about or take for granted. They need you to offer compassion, as do their parents.

And as for this mom, I’m headed out to meet another special needs family for dinner this evening. If you see us sitting with a blank, tired stare, you will know why. But more than likely you will see us smiling, possibly crying, chatting, laughing, and maybe even hugging; because that’s what fellowship does- it refreshes. So, go refresh a special needs parent if you know one.  Because August was a doozy!

*These pictures below were our attempt at First Day of School pictures. If you have a child with Autism then you know that capturing anything on camera is hard to do!  So, this is all I got!     (click on the picture to see the progression)

Smile Ezra!   

Oh dear, Ezra has already lost a shoe!  Now Grace is giving me the Mom-has-taken-a-bazillion-pictures-already look. 

Smile kids!!!!   Ezra is jamming to his music and totally ignoring me....

Smile Grace!  Ok, NOW you can be done!

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

My Back to School Prayer for My Special Needs Child

My Heavenly Father,

I lift up my precious baby boy to you. As much as I love him, I know that you love Ezra with a love far greater than I could ever comprehend. He is your child. I ask that you pour out your blessings upon him as he begins another school year.

Lord, I lift up Ezra’s teacher to you. I ask that you would grace her with patience, understanding, and compassion in extra measure. I pray that when the hard days come, because they will, that you would refresh her spirit and rekindle the passion she must have to work with such a special group of children. I ask that you would give her the energy and courage necessary to not allow my child to settle but to push him and to help him grow and learn. Father, more than anything else, I pray that his teacher would fall in love with him just as we have. May there be opportunities for them to share a smile and a snuggle. I pray she would look upon my child with unconditional love. I ask that you would purpose it in her heart to be one of Ezra’s greatest advocates. And Lord, I thank you for her. I thank you for her love of special children like mine.

I lift up Ezra’s bus drivers, teacher’s aides, therapists, and principals to you, Lord. Again, I pray that they would fall in love with his contagious smile and sweet heart. I pray that he would not be looked at as an unfortunate statistic but as an amazing individual with incredible potential. I ask that as a whole, this group of staff would not assume that “He can’t”, but rather “He might if we try. If we push him. If we believe in him.” Please put a burden on their heart to connect with Ezra and to see what an awesome little man he is. Let their hands be your hands, their hearts be your heart, their words be your words, and let your mercy flow through all those who will come in contact with Ezra this year.

And finally, I lift up my sweet Ezra to you. I pray that his classroom would be a place of comfort, security, excitement, and learning. I ask that you would calm his spirit and give him the self-control to be able to grow and learn. May the Fruit of the Spirit: love, joy, patience, gentles, faithfulness, goodness, kindness, and self-control dwell within him (Galatians 5:20-25). May he be blessed with the strength to overcome challenges.  It is my desire, Lord, that he would feel accepted and loved for exactly who he is and that he would be offered every opportunity to achieve. I pray that he would be able to make a friend this year- a true connection to a fellow classmate. May his frustrations in not being able to communicate melt away this year as he develops the skills necessary to express himself. And most importantly, I ask you Lord for your provision and protection of him. I pray that he will be able to control his impulses to flee and I pray for a watchful eye from all of the school faculty. Father, use Ezra’s struggle to build perseverance, develop character, and also to bring hope to all whose path he crosses.

 I am placing my hope and my trust in You, Lord, for a year of great milestones. For I know that nothing is too hard or impossible for you! As hard as it is to “let go” and watch my little baby go off to school, I thank you Father, that he is not alone. I thank you that you go with him each and every day. I entrust him to your care.

Amen

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. 

My Little Helper

To me, Ezra is a very beautiful and unique name. Our Ezra was named after his Great Grandfather, William Ezra Crew Huggins. We really wanted to use a family name and we loved that “Ezra” also happens to be a biblical name.

It wasn’t until after we had chosen this name for our son that I looked up its meaning. In Hebrew, the name Ezra means “helper”.  Though I can’t quite remember my exact response to this information, I’m sure it was something like “Oh, how sweet! Mommy’s little helper!”

And then, on a very special, very snowy day in December, my “little helper” was born. He was perfect. Such a beautiful baby. Our hearts were full.

We came home from the hospital full of excitement and expectation. Our family was complete! We looked on with joy as our sweet daughter kissed her baby brother and named him from that day forward, her “Ezra Brother”. What a joyous time!

The next few weeks to follow, honestly all sort of blur together. My sweet “little helper” had a shrill scream that I had never heard a baby make before. I couldn’t calm him like I had been able to our daughter. He reacted to noises differently…or sometimes he wouldn’t react at all.

As months past, it became more and more apparent that something was wrong. We began to pursue testing. My sweet Ezra failed several hearing tests and although that was concerning, at least we thought we had an answer. So, then there were appointments, and there were more tests, and there were doctors that acted like I was a young, paranoid mom, and we would get brushed aside… Don’t get me wrong, there was still a lot of joy in our home and many hugs and snuggles, but it was now apparent that my “little helper” needed some help.

Our fight for answers took a while. We moved home to have the support of our family and close friends. We had to push our way through the medical “system” and fight to gain the attention Ezra needed. And honestly, by the time Ezra was given a firm diagnosis of “Autism”, it really was no surprise to us.

My precious “little helper” requires a lot of care. My “little helper” requires a lot of patience. My “little helper” requires a lot of compassion. My “little helper” requires a lot of help…and probably will for a very long time.

But oh, how thankful I am for my “little helper”! You may think that someone who requires so much care, patience, compassion, and help would not be much of a “helper” themselves, but you would be very wrong.

I have learned more about life, love, priorities, family, and patience in the last three years of Ezra’s life than I have ever learned before. He has helped me to see beyond what is considered “normal” and to see to the heart of an individual. He has taught me to look at every person with so much more value. He has taught me that there are some things worth raising a ruckus for and to speak up for those who cannot speak for themselves.  He has taught me to live “all in” each moment, to take joy in the little things, to cherish even the smallest of accomplishments. He has taught me how to love in a different language.

I could spend a very long time telling you all the ways that Ezra is my “little helper”.  I feel so very blessed to have the honor and privilege of being Ezra’s mommy.

Ezra: what a perfect name for my very special “little helper.”

Story time with my Ezra! Of course, it's Thomas the Train!

Temporary Home

I don’t listen to a lot of country music. Don’t get me wrong, I like country music just fine but I am usually jamming to the tune of Veggie Tales in the car with the kids most days. One day recently, I had the rare opportunity to be in the car alone long enough to justify turning on the radio and I decided to skim the channels. I’m not even sure which station I landed on but a nice melody had started playing and I listened along.

It was a song by Carrie Underwood called “Temporary Home” and the chorus brought tears to my eyes.

This is my temporary home, it's not where I belong
Windows and rooms that I'm passing through
This is just a stop on the way to where I'm going
I'm not afraid because I know
This is my temporary home

I instantly began to think about Ezra, about Autism, about our frail earthly bodies. I have no idea what Ezra’s future holds. I don’t know if he will ever be able to fully communicate. I don’t know if he will be able to connect with others.  I thought about how he is in a constant fight with himself and his impulses. I don’t know if he will ever be free of these things here on earth.  There is a lot I don’t know and it can be very overwhelming.

While I am in constant prayer for ways to help our sweet boy here on earth, I do hold tight to the promise of eternity. I am so thankful that the Lord has entrusted my sweet boy to me until that day. I pray for many many more years of snuggles and loves from my Ezra. I pray that we will be able to help Ezra overcome many of the Autism "obstacles" he faces. But I do know that one glorious day, my Ezra will sing words of praise to the Lord, he will run on streets of gold, and there will be no frustrations or fears. What a precious sight that will be!

Oh friends, if you are weary from whatever circumstances you are facing today, I pray that you would be encouraged. This is not it. Our lives are but a vapor that is here for a little while, and then vanishes away (James 4:14). As Christians, we have the promise of eternity!

I am so thankful for the promises of God… they are eternal promises! While I am so thankful for the blessings the Lord has given us here on earth (our life is extremely blessed), I am so glad that this is just our temporary home!

Revelation 21:4 “And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain; for the former things are passed away.”

The Courage to Try Something Wonderful

Not too long ago, we were given a very generous, very wonderful gift. It was a vacation. You see, for the last two years our life has been pretty crazy. Between my husband going back to school, receiving our son’s diagnosis of Autism, moving several times, and learning how to balance this thing called Autism in our daily lives, our little family has been stretched in more ways than we could ever imagine. Throughout this time, I have seen the Lord work and experienced His hand move in my heart and in the life of our family in amazing ways. But that doesn’t mean that it hasn’t been hard. Well, a very special couple who knows our story well, saw a need and gifted us a vacation. What a blessing!

They supplied the trip, but we had to supply the courage.

That’s right, I said courage. You see, it takes courage to travel very far when you have a child with Autism. Traveling forces you to venture into public. Traveling means restaurants and hotels. Traveling means people. And sometimes (not always, but sometimes), traveling can mean stares, ugly looks, and comments.

Traveling with a child who has Autism also means you are taking a child that relies heavily on structure and familiarity, out of their “comfort zone” and introducing them to new sights, smells, and sounds…sensory overload!

So, where might a family like ours vacation where we are most likely to set ourselves up for a successful trip? Welp, we found a place!

Our family took a trip to San Antonio, Texas, where our main attraction was an amazing place called Morgan’s Wonderland.

Morgan’s Wonderland is a park especially designed for special needs families. This park includes all kinds of sensory activities and is fully accessible to everyone!

One of the things that I will never forget is watching a young lady roll her wheelchair onto an adaptive swing, and the joy that spread across her face as she was able to swing through the air. I wondered if she had ever been able to swing like that before. I wondered what an amazing feeling of freedom that must have been for her.

Another wonderful thing about this “wonderland”, was the staff. It was obvious that the staff had a heart for special needs children of all types and they were there to make sure each child had a great time.

What was amazing about this place was that there were families there just like ours. When Ezra had one of his melt downs we didn’t feel everyone’s eyes staring us down. When Ezra rocked back and forth with excitement at the sight of the Choo Choo Train, no kids laughed at him or gave us funny looks. Everyone there was a little “different”, and that made us all the same. How refreshing!

Besides our Morgan’s Wonderland adventure, we did attempt “normal” activities. We swam in our hotel pool, we ate out a few times, and we drove through many-a Starbucks.

We did try to prevent “behaviors” by putting these few things into play:

-          We requested a handicap hotel room (Ezra sleeps in a special bed that we must bring along and he also enjoys the extra space).

-          We called ahead to restaurants and requested tables that were away from most of the traffic/away from the crowd as much as possible.

-          We “armed” ourselves with all of Ezra’s favorite things (toys and movies).  

-          We prayed over Ezra and asked the Lord to give him peace and a calm spirit.

Although we had a few meltdowns and “Autism Moments”, I would consider our vacation quite a success! It was so special to watch both of our children enjoy themselves and share in our much needed family vacation.

I am so thankful for our little getaway! Thank you, Lord, for having provided us with this special trip and thank you for the courage to try something wonderful! 

Below is a gallery of pictures we would like to share from our trip. Just click away to scroll through!  

Eating in San Antonio...in a restaurant! Now THIS took courage and overall I think we did pretty good! 

Family Picture! Ezra is not a fan of the bright sunshine...can you tell?

At the "Sensory Village". Ezra enjoyed watching the bubbles inside the tank.

Ezra took his first ride on a carousel. His special chair strapped right in AND it still moved up and down with the rest of the carousel horses!

Swing time!

This is part of the "Water Works" sensory tables. Ezra loves water, so this was a huge hit!

 "Water Works" sensory table. Anyone who came near Ezra walked away wet! ....and he may or may not have climbed onto the table to stand in the water...opps!

Playground time!

All aboard the Choo Choo Train! Trains are Ezra's "thing" right now. He loves trains! We rode the train several times around the park. He was one happy kiddo!

Of course, Ezra will always find a bathtub to sit in (even in our hotel room)! The bathtub is often times where Ezra goes to calm himself down. It is his "happy place."