Snapshots

Let’s do some real life together today, shall we? My family’s reality probably looks a little different than most. That’s because we have a precious little boy who has Autism. Today I am sharing some real life pictures that help to explain some of our day-to-day “normal”.  Our Ezra is an amazing little boy! He is my “little puzzle” and each day I have the wonderful opportunity to learn from him and learn more about him

Ezra’s “thing” is trains. It is very common for a child with Autism to become attached to a particular character or interest. Ezra loves to line his trains up. He always puts them in a particular order, has to have them lined up perfectly, and will literally spend hours reconfiguring their order and placement. Also notice the bare feet! Ezra has Sensory Integration Disorder and struggles to keep shoes or socks on for very long-they are too constricting. Have you ever seen a mom with a barefoot child in cold weather and mentally judged her for not properly covering her child’s feet? Have you ever stopped to think that there may be a reason that she just absolutely cannot keep shoes and socks on his/her feet?

Ezra spends a lot of time sitting in the bathtub…without water…with his clothes on. There is something about the tight space and tall walls that calms him. When Ezra becomes overwhelmed, many times he will take himself to go sit in the bathtub. He doesn’t generally take toys with him. He just sits. And the simplicity of the solid color walls and closed in space soothes his sensory overloaded mind!

Ezra likes to study objects from very different angles. This is a form of “stimming”. Stimming is one of the symptoms of Autism. It is a repetitive body movement that self-stimulates one or more senses in a regulated manner. 

Ezra can ride a bike too! With the help of Ezra’s AmTryke, Ezra gets to ride his bike along with his big sister. There are special straps that help to secure him in his seat and straps that keep his feet from slipping off of the pedals. There are also special straps that hold his hands on the handle bars but he is just not ready for that yet…and he is not yet willing to let go of the trains in his hand! The AmTryke has a bar that extends from the back so that we can push him. We have faith that one day Ezra will be able to ride a bike all on his own!

Ezra loves to play in water…even muddy water! We encourage this sort of sensory input, especially because for so long he was absolutely terrified to get any dirt on him. To some, this is just a cute picture of a kid in a mud puddle, but to us, this is a victory!

This is Ezra’s very special bed. It zips up completely and the zipper is on the outside. This is for his safety. Ezra is unable to sleep in an open, standard bed. When put in a “regular” bed, he jumps all night and is unable to bring himself to go to sleep. Ezra also tries to elope. (Both insomnia and elopement are typical with many children who are “on the spectrum”) Ezra finds comfort in his cozy bed and will often times “request” to be zipped in so he can calm down and give himself rest. 

I love this picture. Besides the fact that it is just sweet, this picture represents Connection. It is often times hard for Ezra to make eye contact, let alone to allow someone into “his world”.  We captured this precious moment this last week. The key to making a connection with Ezra is to make yourself available. We usually are most able to make a connection with Ezra when we lay on the floor. Then, he will usually come and sit near us. Connection is not something you can force. Connection happens by patiently pursuing and by waiting for Ezra to invite you “in”.

I am no Autism expert, but I have learned that the key to life “on the spectrum” is letting go of “normal” and embracing the unexpected, sometimes crazy, very special life that the Lord has blessed us with. These little snapshots of our life give just a glimpse into our every-day “normal”. 

No Greater Love

I became a Christian at the age of twelve. I was a very broken little girl who came from a very broken past. The Lord became my Heavenly Father, my shelter, and my peace. Jesus became my all in all and filled up all those broken places in my little girl heart. His unconditional love for me boggled my mind then and it still does today. I praise the Lord that I am redeemed by the blood of the Lamb! There is no greater love than the love the Lord has for you and for me.

I have stood in amazement at the Lord’s unfailing love for his children for a very long time. Then, I had my first child, and the Lord’s love for me took on a whole new meaning. As a new parent, I gained a whole new perspective of what it means to love someone unconditionally. I held my sweet little girl in my arms and a love welled up inside of me, deeper than I ever thought possible. I held each of her tiny little fingers, kissed her toes, memorized each tiny freckle, and marveled at the beauty of my little girl. I can remember thinking This must be how the Lord looks at each of us, His children. This is how precious each of us are to Him.  Just as I have pursued my little girl with my love, cheered over her accomplishments, and cried over her hurts, so the Lord does for each of us. It is by no merit of our own, but because He is our loving Heavenly Father who loves us unconditionally.

Then, I had my second child. Again, the amazement of how deep a parent’s love can run overwhelmed me. I held each tiny finger, kissed his toes, memorized each tiny freckle, and marveled at the beauty of my precious little boy.  Not much time passed before we realized that our sweet boy was struggling. I have shared before many of the details of Ezra’s diagnosis and the long journey of our discovering that he has Autism, so I will spare you those details for today. But as Ezra’s life story unfolds, the Lord continues to reveal Himself to me in ways that take my breath away. Having a child with Autism has even further taught me about what it means to love deeply, passionately, and unconditionally. Having a child with Autism has even further taught me about my Heavenly Father’s love and the way that He pursues His children.

You see, the love I have for my special needs child is a pursuing love. There is a driving force inside of me that causes me to consistently pursue my precious little boy with a deep kind of love. This must be so, because often times my love is not received or accepted by him…So I wait. And try again. And again.

Do you know what it is like to have your child spit in your face? Do you know how it feels to have his precious tiny hands shove you away? It is heartbreaking. It hurts my heart much more than my body when he becomes aggressive and tries to hit me. But my love for him is a deep love. It is deeper than any wound.

When he hides from me in tiny, dark corners, it takes all that I have not to drag him out of his hiding place and hold him tight in my arms. When he covers his face with his hands and turns his head from me, it grieves my heart because I want so badly for my child to look me in the eyes. My love for him is a jealous kind of love; my desire is to have a relationship with him. But my love for him is also a patient kind of love, so I wait for him instead.

Can you imagine the joy that floods my soul when he allows his eyes to meet mine? Can I tell you how my heart swells when he snuggles me or gives me kisses? Or when he notices me? I am overjoyed when he is able to overcome obstacles. I rejoice in his accomplishments. I take such pleasure in discovering each little piece of his personality as he allows it to be shown. Oh how I love my little boy! My love for him is an unconditional love.

How much greater is the Father’s love for each of us! Since I have had Ezra, the love of my Heavenly Father has become more and more real to me.

How many times have I spit in my Heavenly Father’s face? How many times have I shoved Him away? How many times have I become angry with Him for things I do not understand? How many times have I wounded Him with my words? But His love for me is a deep love. It is deeper than any wound-even death on the cross.

When I hide from the Lord in tiny, dark corners, He calls my name. He never loses sight of me. How it must grieve His heart when I turn my face away from him. How he yearns for me to have a relationship with Him. His love for me is a jealous kind of love. But His love for me is also a patient kind of love, so he waits. He waits as long as it takes because I am His child.

Oh the joy He has when I call on His name! When I notice Him! He is overjoyed when I am able to overcome obstacles. He rejoices in my accomplishments. Oh how He loves me! His love for me is unconditional. His love for you is unconditional too.

Friends, there is no greater love than our Heavenly Father’s love for us, His children. It is a pursuing kind of love. It doesn't matter how far you have strayed, how ugly the condition of your heart, how many times you have spit in His face, He loves you unconditionally.

I praise the Lord for the awesome way He uses my little boy’s life to encourage me, and reveal Himself to me. I hope you are encouraged as I am. I hope you are able to experience the unconditional love of our Heavenly Father. There is no greater love!

"How great is the love the Father has lavished on us, that we should be called the children of God." 1 John 3:1

Reading a Thomas the Train book...sort of! At least I got some snuggles!

I Asked For Help

I have struggled through this blog post. Seriously. Every. Single. Word. That’s because this particular blog post has caused me to be very vulnerable, very transparent. What’s wrong with vulnerability or transparency? Absolutely nothing.  In fact, I consider myself a pretty transparent person. I strive to live with authenticity as much as I can. I certainly don’t shy away from opening up about things and sharing my story…or so I thought.

I thought I didn't mind sharing until it came to this. This one thing that, until the last few weeks, I didn't realize was such a struggle for me. It would be very easy for me to tuck “this thing” away, keep it to myself, and not share it will all of you. But that wouldn't be holding true to the very purpose of my blog which is to offer encouragement to parents who are living with children “on the spectrum”, but also to offer understanding and insight into the life of a special needs family- the good, the bad, and the ugly. So, I have decided to share…

I did it. I asked for help.

 Just so you know, I do not struggle with asking for help in most areas of my life. If I have a question at work, I will ask it. If I need help on a project, I will ask for help. If I have a problem with my car, I am certainly not about to touch it. It has never been a goal of mine to portray myself as “Miss Independent”. I have no problem asking for help!

…except when it comes to taking care of my home and my family. To me, this is one area that I should be able to excel in without someone’s help. It is my honor and privilege to take care of these things. In fact, I love it! I love cooking, cleaning, ironing, and folding laundry. There is something about seeing fresh lines in the carpet from the vacuum cleaner that makes my heart happy. I love being home when my children are out of school. It fills my heart with joy to snuggle up with my two kiddos to read a good book or to play a game. But the fact of the matter is, it is really hard to do all this as a parent of a special needs child.

I hope by now (if you have read my previous blog posts) that you have no doubt how much I absolutely love my precious little boy (who has Autism). I consider him one of my most precious blessings. I also consider it such an honor that the Lord would entrust such a special child to me! Having a child with Autism has given us a whole new perspective on life, love, and what matters most.

That does not mean that it is not hard.

In our particular case, being the parent of a special needs child means that as soon as I try to make tea for dinner, my little boy is trying to pull the boiling water of the stove. It means that I cannot turn my head for very long for fear that he might try to escape out the door. It means that there are fewer home cooked meals and lots more fast food meals because we have to ride in the car to calm him down.  It means many sleepless nights. It means that while trying to accomplish even the smallest of tasks, my precious child is throwing his toy trains at the walls, the windows, the TV, and at his sister. It means occasional aggression, frustration, and anger spewing forth from a little four year old boy. It demands monthly paperwork and logs enough to be considered a full time job. It means that by the time my little ones are asleep in bed, I don’t have the energy left to accomplish all the many things that need to be taken care of.

It’s not all the time. But generally, if I am occupied with anything other than him, he begins to fall apart. Because he does not have the language to express himself with words, he tells me with his body that he just does not know what to do with himself.

Because both of my children are so very precious to me and out of obvious necessity, I chose them first.

So, the dishes had begun to stack up. The floor sometimes looked like a treasure hunt. There came days that my entire family was going to have to go our various ways naked, stay home-naked, or wear three-day-already-worn clothes. There were a lot of unwritten blogs. Chili Frito Pies became a delicacy in our household. Once evening came, I could hardly keep my eyes open.  I am supposed to be able to manage all this! I am supposed to be able to control my child’s behavior. This is my number one job! Why do I feel as though I am doing nothing well? The one thing that I had taken so much pride in doing, I realized I wasn't able to do. I had to ask for help. I had to let go of some pride-something I thought I never really had an issue with.

Here is something else you should know about us special needs parents:  #1 We trust very few people with our children.  #2 There are few who we would feel comfortable with having come into our home on a consistent basis. This is not an issue you can push. It is what it is. We are protective of our little ones and protective of our not-so-ordinary lives.

I prayed and prayed for the Lord to provide just the right person. I knew it would have to be a person who understood the situation, who understood Ezra, and who had a very big heart. The Lord provided.  A very dear friend of ours agreed to be my “helping hands”. She has come in and helped me with laundry. She has helped with the dishes and with cleaning. She has been my second set of hands during the kids bath time (this activity always requires two adults). She played with my little girl so she would not have to play by herself during her little brother’s in-home therapy session.

The first time I walked in to a clean house and an unloaded dishwasher, my eyes welled up with tears. You may think I’m trying to embellish this story, but I’m not. The time I was able to have help bathing my kiddos, our family was able to spend extra time in the evening playing together. In the last week, I have been able to bring my children home from school and just play with them and give them the attention they need without the heaviness of wondering how on earth I was going to have all the other things done that needed to be done for my home to function properly. There has been less chaos and more order.

 Yes, it was very hard for me to get to the place of having to ask for help. Yes, I have been a bit embarrassed to admit that I can’t do it all.  But I am now realizing that it just might be an ok thing, healthy even. I find it almost liberating.

Believe me, there are still many things this special needs mom has to take care of, but what a blessing it is to have someone help to lighten my load. I praise the Lord for my sweet friend and her “helping hands”. I am truly thankful that the Lord continues to use this Autism journey to mold me and refine me…even when it’s not easy and sometimes requires me to let go of some things, such as pride.

If you know a family that has a special needs child, pray about how you might be able to minister to them. Don’t expect a thank you card-they are deeply grateful, they just don’t have an extra second to sit down and write a complete sentence. Even the smallest gesture is a big deal. A word of encouragement, a trip to the grocery store for them, or a cooked meal can make such a huge difference in the life of a special needs family. Just be there for them. Let them know that it’s ok to ask for help!

Playing in the backyard: Ezra loves the sound of the wagon crunching the leaves underneath! Grace loves blowing bubbles for her baby brother! ..note her very unique sense of style! 

The Lights are Off, but Everyone's Home

The lights are off in our home more and more lately and it’s not because we are trying to save on our electric bill (though that would be nice). It seems that just about the time we have struggled through a particular behavior with our sweet boy, his Autism begins to manifest itself in some other new way. In the last two weeks, our son has begun a new set of behaviors that are taking some getting used to…and are keeping us in the dark.

Ezra used to walk through the house making sure that every light switch was turned on. Darkness seemed to frighten him. Our entire home would be lit up whether there was one person home, or an entire house full of people. So, I found it peculiar when one afternoon I realized that the lights in our house had not been turned on. I wandered back to Ezra’s room where he had been playing with his trains to find my sweet boy curled up in a tight little ball, in the darkest corner of his room, with his hands over his ears, eyes shut tight, and he was rocking back and forth. I panicked. He had never done this before. I just knew that he must have gotten hurt or something must be very wrong. So, as any good momma would, I got down on the floor with him and tried to comfort him. Ezra did not want comfort. Ezra did not want to be touched. And he made that very clear. I sort of staggered back down the hallway with an aimless walk…what was I to do? So, I just waited for my little boy to come out of his protective little ball. Two hours later he came out and it seemed he had recovered from whatever “it” was that had bothered him so.

Ezra used to show that he was overstimulated or on “sensory overload” by spitting, throwing, screaming, or aggression. He still does these things but as the days have gone on, his new behavior of sitting in dark corners, in a tight ball, with his hands over his ears have increased. This may seem strange, but I have found myself thinking – I liked it better when he would just spit. Or I wish he would just throw something instead. Why on earth would I think this? There just seems to be something so defeating about a little four-year old boy seeking out the darkest corner so he can shut the world away – his momma included. At least with his previous behaviors there was contact. Too much contact? Yes. Were the previous behaviors frustrating and destructive? Yes. But I was able to be hands-on in helping him to calm himself and overcome. Now, I am finding myself fumble through the house like an awkward teenager who doesn’t know what to do with their self. I want to help and comfort and my son is very clearly letting me know that he best way to do that, is to back off.

Then, one day last week, it took two full hours after Ezra had gotten off of the bus before I saw his face. He kept his face buried in his little hands and was softly whimpering. I took him home where he positioned himself in a corner of the kitchen until he was ready to “come out” of his hiding. Once he was done, the day went on as usual. He obviously just needed that time.

The next morning is what tipped me over the edge. As our usual routine goes, I woke him up, got him dressed for school, and we were walking hand-in-hand out of his room to go eat some breakfast. Ezra stopped at his door way, he released my hand, reached up and turned off his bedroom light, and looked me straight in the eyes as he closed his bedroom door…shutting himself in, and me out.

I did not know what to do with myself. I stood staring at the closed door for quite a while. I listened. I waited. Finally, when I couldn’t stand it any longer, I cracked the door open just enough to get a peek. Ezra had crawled back up on his bed and was sitting in a tight ball, eyes closed, hands over his ears, and he was rocking. I closed the door. As much as I wanted to go into his room and try to hold him and help calm him, I knew I had to respect the fact that he had very clearly sent me a message that he needed some alone time. About thirty minutes later, he came out and was ready to take on the day.

I was so sad. To me, this new behavior was so dis-heartening. I had to talk to someone…I called one of the many special people who work with Ezra on a consistent basis. I needed to know what to do. I did not get the response I thought I would.

This is a “good thing”. Yes, we talked about Ezra for a long time, but the main “take away” for me was that Ezra’s new behavior is actually his new coping mechanism. Ezra has found something that works for him! He discovered it on his own and it’s a way that he can cope with all of the sensory input that tends to overwhelm him. It is not destructive. It is not harmful. In a way, this is a victory.

Perspective. That was exactly what I needed.

So, if you happen to venture our way, and you see that the lights are off…it doesn’t necessarily mean that nobody’s home. It is very likely that my sweet little man is working. He is working to overcome, working to cope, working so that he can bring himself out of his hiding place to enjoy the rest of his day.

It’s different. It’s new. It will take some getting used to. But I am beginning to appreciate the darkness. The darkness offers him comfort right now. It’s a comfort that I cannot offer. It’s a step of independence. Even though the Momma in me wants to hold on tightly, I am so proud of Ezra for finding a way to independently sooth himself.

I have no idea if this will be his forever coping mechanism or if it will change again. For now, the lights are off, but everyone’s home!

Some rocking chair therapy with Dad! I am so thankful for moments like this!

A God Who Sees

Lord, you are near.

When my son’s disability weighs upon my heart, I am reminded that You have the ability to accomplish every purpose you have planned for him.

I do not fully understand the world in which my little boy lives, but You do. I do not know his thoughts and do not know all his ways, but You do. You love him with a love that is beyond all comprehension. You go before him. You know him by name. Even when he hides himself in the darkest corner, You see him. There is no place he can run that would escape the view of his loving Heavenly Father.

You rejoice over the smallest of his accomplishments. It brings a smile to Your face when he dances to songs of praise. And oh, how it must fill Your heart with joy when he whispers one of the few words he knows by heart, “Jesus.”

Yes, he is fearfully and wonderfully made. He was made in Your image. He is Your child. I praise You that You are a God that loves with an unconditional love in a world full of conditions. I trust that You reveal Yourself to him and that he knows You in his own very special way. Lord, I ask that You wrap Your loving arms around him so that he may feel secure, calm his mind and his heart so that he can experience peace, and give him the strength to break through the barriers that overwhelm him so.

Lord, I thank you that I am not on this journey alone. When I feel stretched in every direction, You calm my spirit. When the demands of life begin to overwhelm, I am reminded that You are life. I can trust in Your word. I can claim your truths in my life.

As I strive, stretch, and search for daily strength, I am never on my own. My prayers do not go unheard. You collect every tear that I've cried. When my son softly touches my face with his little hands, You are there. When he flashes his beautiful smile, You smile too. Every step taken, word spoken, kiss given, and hug offered is a victory that You rejoice over with me. When I lay awake in bed and listen to my child’s unsettling screams and sounds, You are there. Though I can sometimes be physically worn, You are the healer of my soul. When frustrations and fears creep in, it is You who offers peace. You know my heart even when I cannot put into words the burden it carries. No words are needed in the presence of the Lord Almighty because You know your children.  

I praise You that You are a God who sees. There is nothing that goes unnoticed by You. Even with all of the cleaned up spills, picked up toys, kissed boo boos, refilled sippy cups, and sandwiches made, You are there. In the moments of aggression, meltdowns, stares from strangers, comments, crying, and throwing, You do not turn Your head. You are near. You are ever constant.

This journey of Autism is not an easy one. This journey of Autism is a life long journey. Lord, I thank you that we are not in this alone. I praise you for the sweet victories. I praise you for the storms. Thank you that You are a God who sees. Let this be a journey that brings glory, honor, and praise to Your name. Amen.

A New Year

I wandered down the hallway this New Year’s Eve, to the bedroom of my sweet little boy who was snuggled up and sleeping soundly in his bed. I peered in and watched his little body rise and fall with each breath. So precious. Such a blessing. Such a little puzzle. So thankful.

As most people do when ringing in a new year, I began to think of all that this past year has held for us. I began to think of Ezra. There have been so many trials and so many triumphs.

There have been rock bottom moments such as the time I had to lay sprawled out in the middle of the store parking lot with cars honking at us while my Ezra had a complete meltdown or my coming unglued with a lady in the grocery store (See 1 in 50: My Supermarket Story). Oh yes, there have definitely been struggles this past year. There has been a struggle to connect, physical struggles, emotional struggles, coming-to-grips-with-our-new-reality struggles, and I’m sure I could go on.

But there have been triumphs, sweet victories, and precious moments. I never want the struggles to cloud out the good in my memory. I think that’s right where the enemy wants us- remembering only the darkness and forgetting the Lord’s mercies in our lives. This past year, I was able to hear Ezra (at 3 years of age) say my name for the very first time. There is no sweeter sound than hearing your Autistic son say “Momma”. This past year, Ezra began to go to school, he rode the school bus, he began singing, began to try self-feeding, has started walking holding hands, has started to communicate his wants and needs in his own special way, has begun to connect with his sister, and again, I’m sure I could go on.

There have been many tears shed this past year; tears of joy and tears of sorrow. I can honestly say without hesitation that I am thankful for each moment.  This journey of Autism has caused our family to dig deep, decide what’s most important, allow ourselves to be vulnerable, to reach out, to not be ashamed to cry, it has given us new perspective, and has taught us how to love in a different language. Without the struggles, the victories would not have been so sweet. I have found a way to be thankful for the storms and never want to take for granted this life that the Lord has blessed me with.

I have no idea what the Lord has in store for us this new year. I do not know what the future holds for Ezra. If I’m not careful, I can find myself feeling anxious for my sweet boy. That’s when I remember. I remember the Lord’s faithfulness. I remember that He does not ask us to walk this journey alone. I remember that He has a plan and a purpose for each of us.  I remember His unconditional love. I remember that His mercies are new each morning.

Dear friends, as you look back at 2013, do not let the trials overshadow the triumphs. Do not overlook the blessings to only focus on the blunders. As you look forward to 2014, do not let your heart be anxious.  We are not always guaranteed easy, but the Lord promises that we never walk alone. Hang on to His promises!

Thank you for allowing me the opportunity to share our story with you. I have so enjoyed your feedback, emails, comments, and prayers. I wasn’t sure about this whole blogging thing when I first started, but you have made it something very special. Thank you for reading and being a part of our lives this past year.

“For I know the plans I have for you”, declares the Lord, “plans to prosper you and not to harm you, plans to give you a hope and a future.”  Jeremiah 29:11

“Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.”   Philippians 4:6

Enjoying New Year's fireworks with my Ezra man!

Sometimes You Just Have to Laugh

The stage was set perfectly as each little child flashed their biggest smile while taking their place for our church’s Christmas performance. There was a packed house as parents, grandparents, neighbors, and friends sat ready with their cameras for what was sure to be a marvelous show.

There our little family sat, about five rows from the front of the church, eager to cheer all the children on who had worked so hard for this moment… and yes, I do mean our ENTIRE family sat there, in the sanctuary, with the masses.

It had been a really long time since we had tried to let our son, Ezra (who has Autism), sit in the sanctuary.  Normally we would not have attempted this- the crowds of people and the many different noises that seem to echo through an open sanctuary are all far too overwhelming for my sweet boy. But this was a musical Christmas program, and Ezra loves music, so we just had to try!

So with hopeful hearts, we wheeled him into the sanctuary in his special chair, parked him beside us in the pew, and prayed that he would have a wonderful experience… and just as the opening prayer began… “Help! Heeeelp! Heeeelp! Help! Help!” 

I was shocked!  A random stream of thoughts began to run through my head.

Thought number one: Wow! Ezra just SAID the word help! And I think he used it sort-of appropriately! He just said a new word! That’s awesome!

Thought number two: Oh my goodness, my child is screaming “Help!” in the middle of a prayer, in the middle of the sanctuary, at the beginning of our church’s huge Christmas program!

As inconspicuous as I possibly could, I wheeled Ezra out into the hallway and immediately began to hunt down some crackers…that’s right, I was trying to find something for him to fill his mouth with other than the word “help!”  After crackers had been secured, my little man seemed content munching on his snack, he had quieted, and the singing had begun inside the sanctuary. Surely now that he has had a snack, he would be happy to watch the musical. Ezra loves music! I just know he will love this.

We resumed our positions in the worship center as the first soloist, a little girl, began to sing her lines in a sweet and beautiful voice... “Help! Help! Heeeeelp! Heeeeelp!”  My sweet boy’s voice pierced through the Christmas melody. I believe he was done.

My husband offered to take Ezra out this time. He planned to take Ezra to our Church’s Special Needs class for children…obviously, that is where Ezra wanted to be. We had completely upset his routine and expectations for that Sunday and he wanted to let everyone know it!  The easiest route from the sanctuary to Ezra’s special class (or the route that would cause the least further disruption) was to go out of the sanctuary, through the side parking lot, and into our children’s building. The only issue was that it was a very cold morning.

So, Jake did the only thing he knew to do…He briskly did a little “walk/run” and pushed Ezra’s chair  as quickly as he could in the cold morning air. Through the parking lot, Ezra continued at the top of his lungs with his “Help! Help! Heeeeelp! Heeeeeelp!”

I’m sure this was quite a sight! Jake continuously glanced from one end of the parking lot to the other as he made his way to the children’s building- he just knew that if someone saw a man running through a parking lot, pushing the wheelchair of a child screaming “Help!”, the outcome would probably not turn out in his favor.

Ezra did make it to his children’s class that morning. There, he was loved on, was taught about the Christmas story, and even listened to Christmas music. And he was happy as could be! It wasn’t what all the other kids did that day, but it worked for him and it was his little routine that he expects and loves.

What can I say? We tried!  As a parent of a special needs child, you have to try because you never know when you might be met with success. As for the times that are not so successful, sometimes they are gut-wrenching hard, sometimes they are frustrating, and sometimes you just have to laugh about them!

This is one of those times that I can laugh about. I can also be thankful- my child learned a new word and my husband wasn’t jumped in the church parking lot for stealing a small child in a wheel chair! In my world right now, I consider that a fairly successful day! 

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!