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."

A Smile is Worth a Thousand Words

Ezra does not have many words. I will say that over the last half year, he has definitely made huge strides in his communication skills (words and sign language) and we are so excited for this! I believe communication is one of the biggest obstacles in our Autism journey so far. There are few words that Ezra uses consistently, that demonstrate comprehension.

Often times, Ezra becomes very frustrated because he cannot communicate his needs or wants. I cannot imagine how trapped he must feel to not be able to express himself.

There are patterns in Ezra’s behavior that, as his parents, we have been able to pick up on and we can sometimes guess what is bothering him or what he wants. Other times, as Ezra’s frustration mounts, we are left scrambling to try to understand what the cause is and often times we feel helpless.

Each day we have a new opportunity to try to connect with him, learn from him, and get into “his world”. Each day we have a new opportunity to find a way to communicate our love to him.

I am so thankful that there are ways to communicate other than using words. Other than using my words to say “I love you, Ezra”, I show love to my sweet boy by laying on the floor with him, rolling his toy car back and forth across the kitchen floor, tight squeezes and hugs, and dancing to his favorite tunes.

He may not always be able to bring himself to look me in the eye, but he has a beautiful smile that will stretch across his face. In moments like these, his incredible smile is all the communication I need. His smile communicates happiness. His smile communicates excitement. His smile communicates love.

I cannot begin to express what joy it brings to my heart to see my sweet boy’s smile. His smile is one of God’s many sweet reminders that everything is ok!

I have faith that the words will come. It may take time and hard work, but they will come.

But for now, a smile is worth a thousand words.

This past week we visited New Life Ranch in Colcord, Oklahoma. New Life and the staff that live there, hold a very dear place in our hearts. We had a wonderful visit and were able to capture a few of Ezra's amazing smiles while we were there!

Something Worth Celebrating

My husband Jake and I celebrated eight years of marriage this week and about twelve years of being best friends! I’d say that’s something worth celebrating!

Just like many of you, we have had trials and triumphs, heartbreak and hope, loss and laughter. I was sort of taking inventory of our marriage and our life together the other day and was completely moved to tears of thankfulness for what we have.

I remembered Jake’s sweet proposal and how I was so excited that I almost forgot to say “Yes!”  I thought about the priceless look on Jake’s face as he waited for me at the end of the aisle that I walked down to marry my best friend. I thought about our first home that we rented with the questionable, yet very entertaining neighbors.  I thought about all of the fun road trips we took just to getaway. I thought about the first home that we bought and how we found out we were pregnant with our first child the same week that we closed on it. I remembered feeling forever changed as we welcomed our precious baby girl into the world.  I remembered how the Lord called us into full time Christian camp ministry and we packed up our belongings and moved away to work at a camp for a few years-such an exciting journey. I thought about our miscarriage and what a confusing time that was for us. I thought about the pure joy of having our second child, a boy, and watching our daughter bask in her “big sister” status. I thought about the fog that seemed to settle over us as our son was diagnosed with Autism and as we tried to figure out what that meant for our family…

And then, then I thought about how through all of this, no matter how great times were or how hard, we have never given up. Our marriage is far from perfect, but we have not given up on each other and we have never given up on the Lord. I am so thankful for that. That is something worth celebrating!

And that Autism “fog” I mentioned, I would say we are still in it…but I think that it is lifting ever so slightly with each passing day.  We are learning more and more about what it means to be a family with a special needs child. We are finding ways to connect with each other and with others in spite of the fact that our family may be a little “different” from others. We are finding peace in the knowledge that the Lord is in control and that He loves our sweet boy with a love far greater than we could ever comprehend. Some days seem “foggier” than others, but we are holding fast to our faith and to each other.

Over the last two years, I have read enough statistics about Autism to make your head spin. Statistics regarding marriages where there is a special needs child are very depressing. If you take just a quick glance at these statistics you will find figures ranging anywhere from 80%-95% of Special Needs Families end in divorce. That’s a pretty terrifying number.

My family is part of this statistic. We will either choose to fall in the 90% or we will choose to fall in the very small 10%.

I want to be in that 10%. I am not disillusioned enough to believe that it won’t take some very hard work. I am not naïve enough to believe that I won’t have to fight for my marriage. Although blessings abound with having a special needs child, it is still no walk in the park. I know it will take work, I know we will have to fight for our marriage, and I know that unless our marriage is grounded in the Lord, the odds are stacked even more heavily against us.

My challenge to myself and to other parents in our same “Special Needs Family” situation is this:  Could we not grow closer to our spouse and closer in our walk with the Lord because of this thing called Autism? Could it not be that this is our very special, God-granted opportunity to draw from the strength and peace that our loving Heavenly Father offers us daily? Could it not be that this is our opportunity as a couple to lean on each other even more as we travel this Autism journey? Let’s be intentional. Let’s be proactive. Let’s be part of that 10%.

 One of my greatest prayers is that Jake and I would “grow in the grace and knowledge of our Lord and Savior Jesus Christ” (2 Peter 3:18) and as we grow closer to the Lord, that we would grow closer together. I pray that years from now we will still be able to boast in the love we have for one another and the love of our Lord that carried us through. That would be something worth celebrating!

Something Worth Celebrating!

"Ezra Brother"

I had always said that if we ended up having two children, a boy and a girl, that I hoped the boy would be the oldest. I wanted him to be the protective older brother. As life turned out, we do have two children and we do have a boy and a girl…but Grace came first. How thankful I am that His thoughts are not my thoughts and His ways are not my ways. How thankful I am that Grace is Ezra’s big sister!

Being the big sister of a brother with Autism is quite a special job. Being the big sister of a brother with Autism means many family trips to doctors’ offices and waiting rooms, listening to the same songs over and over again, joining in on therapy sessions, sleeplessness when brother has had a rough night, and having your princess dolls beheaded and catapulted across the room. Being the big sister of a brother with Autism takes a lot of patience, unconditional love, selflessness, compassion, sacrifice, and understanding. That’s a lot to take in for a five year old little girl!

There are definitely times that Grace struggles. Often times she will have to give up something that she is doing because Ezra is having a rough day. Our family is not able to go and do some things that the average family is able to go and do. Our family does not necessarily look like an ordinary family. But with all of the sacrifices and struggles involved, Grace handles them with such compassion and thoughtfulness. I believe the Lord is using Ezra to develop a maturity in her that can only come from having a sibling with special needs.

Sometimes I wish we could all be as accepting and caring as children. Grace very lovingly refers to Ezra as “My Ezra Brother” and likes very much to introduce him to everyone she meets. Although Grace does not necessarily understand the word Autism yet or know all of the “Spectrum” lingo, she does understand that her brother is a little different from other kids. It almost seems that because of this difference, she has made it her own special mission to introduce him to the world as her very special “Ezra Brother”. Grace will remind others “Say hello to my Ezra Brother” and “Don’t forget to say goodbye to Ezra!”  She is always looking for ways to include him as much as possible.

Grace daily impresses me in the way that she interacts and responds to her baby brother. I believe there is no greater therapy for Ezra than to have his sweet sister “get into” his world. Grace pushes him to interact, she initiates play with him, she knows how to help calm him down, and she knows how to cheer him up. We do a lot of Sign Language in our home and Grace has become our “Sign Language Police”- she knows just about every sign and corrects us frequently! Sometimes I have to remind Grace that she gets the great honor of being the big sister but she does not have to be the Mommy and Therapist as well- she is always so eager to work with Ezra. I believe Ezra knows without a doubt how much his big sister loves and adores him.

Not too very long ago I spent a good hour sitting on the floor outside of the kids closed bedroom door, just listening. We had put the kids to bed and it sounded like Ezra was probably going to have a rough night. He began to cry and hit the bedroom walls. All of a sudden I began to hear Grace’s sweet voice singing at the top of her lungs. She was belting out as many of Ezra’s favorite songs that she could remember, one right after the other. I sat outside their closed bedroom door and just listened as Ezra grew calmer and calmer. That night Grace sang her baby brother to sleep and I just sat with tears streaming down my cheeks on the other side of the door. Thank you Lord for moments like these!

I am so thankful that His thoughts are not my thoughts and His ways are not my ways.  I am so thankful for the very special way that the Lord designed our little family. I am so thankful that Grace is Ezra’s big sister. I am so very thankful for the sweet relationship that Grace and Ezra have with one another.  

Although it is hard at times, I am thankful for the opportunity that Grace has to learn to Love in a Different Language- I believe it is all part of God’s great plan and is helping to shape her into the very special person He has created her to be.

“For my thoughts are not your thoughts, neither are your ways my ways, as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.” Isaiah 56:8-9

Grace and her "Ezra Brother" celebrating the 4th of July

1 in 50: My Supermarket Story

Florescent lights, squeaky shopping carts, noisy people, long lines, crowded isles, crying babies, loud announcements…that’s right, I’m talking about the Supermarket Experience. Even a short trip to the supermarket can cause the average person’s blood pressure to rise, but what about a person who has a Sensory Disorder? What about a person with Autism?

Grocery shopping is absolutely one of the very hardest things to do (for us) with an Autistic child. In fact, we are currently at a point in our lives were we have stopped trying it all together. I can’t tell you the last time we took Ezra to the grocery store. Well, there was that one time a few weeks ago but we literally set one foot in the door and he began to scream and cry and we walked straight back out (That doesn’t really count, right?) I cannot begin to image what the store is like for my little boy. What I do know is that it is obviously so very overwhelming to him that he sometimes must cover his ears, cry, scream, rock his head from side to side, and he spits everywhere (a very common reaction for Autistic kids-a way to release frustration-as he has no way to communicate what he is feeling).

I do not want this post to become Nichole’s “Supermarket Sob Story”. That is not my intent. My hope is to offer some insight into the world of our special needs family and what it is like to venture into public places.

I have some numbers for you. One in fifty. That is 1 in 50 people.  In March of 2013 the CDC released new statistics stating that one in fifty kids in America have Autism.

Just to give some perspective, based on this statistic, this means…

-When you are out to eat- there is probably at least one person with Autism eating at the same place as you.

- You probably have at least one person living with Autism near your home.

-If you have kids, they have several children who have Autism in their school.

-And yes, if you go grocery shopping, there are probably a few people in the supermarket who have Autism as well.

I hope you understand that for every family like ours that is venturing into town with an Autistic child, there was a lot of preparation, apprehension, and a lot of prayers that went in to it.

Honestly, what has been one of the hardest things is not necessarily my child’s reaction to public places, but the reaction of other people in those public places to my child.

We have received dirty looks, snide comments, and ugly stares. We have received comments such as “You should really learn to discipline your child” and overheard “Did you see that kid over there? He is out-of-control.”  Ouch!

Then, there was that one day. The day that caused me to want to take my little family and go into hibernation for a few years… I had just about completed my shopping. It hadn’t been a trip of ease but we had survived thus far and Ezra had just about decided that he had had enough-I imagine he had reached a point of being severely over sensitized. He began to spit (not just a little shower of spit…more like a torrential downpour).  A lady wheeled her cart straight over to mine and declared “Did you realize that your child is spitting? Do you know how unsanitary that is?”

I lost it. I wish I could tell you that I remained composed and gave a very godly answer with a sweet explanation for why my child was infecting the store with his “unsanitary” saliva.  I am used to giving explanations by now. I am not generally one to fly off the handle.  BUT, this was my response…

“Yes, I do see that my child is spitting and WE LIKE IT!”  Then, I turned my cart –with spitting child in tow- and walked as fast as I could to the checkout counter. We. Were. Done.

“We like it”? What on earth does that mean? Have Mercy, Lord!

Ladies and Gentlemen, one in fifty. 1 in 50. Families like ours are everywhere. Precious children just like my little boy are everywhere. The next time you see a child acting out in public or having a complete meltdown, it is very possible that they need a good ol’ fashioned spanking OR it is very possible that they could have something else going on altogether. Please don’t judge. Please don’t stare. And for heaven’s sake, don’t offer up criticism and rude remarks.

Let me tell you, there have been a few precious souls that have come along side of us while in public and have been such an encouragement. I would love to tell you about the lady who took a rag out of her own purse to help clean up the detergent that was running down the front of my shirt when Ezra knocked the entire bottle off of the shelf. I would love to tell you about the lady who helped me bag up my groceries at the checkout counter so that I could get out of the door a little quicker while my sweet baby was having a meltdown. I would love to tell you about the store manager at one of our local Christian bookstores that was sure to tell me that my child was “always welcome there any time” even after my child had screamed just about the entire time while I was there to pick up my book order. Thank you Lord, for these precious people!

Please note that not EVERY venture in to town is a complete disaster. We steer clear of grocery shopping right now but we have been able to successfully go out to eat as a family at Ezra’s favorite restaurants and will occasionally attempt a small store every once in a while. These successes may look different than the average dinning family, but they are huge for us and we are thankful for these times.

When we do get brave and make an effort to go in to public places, I am so thankful for those who do not look at us with scornful looks. I am so thankful for those who smile or offer up words of encouragement.  You can make such a huge impact on a mom like me and a family like ours with just a little bit of compassion and understanding.

Would you please be one of those people? One of those people who are able to see beyond what is considered “normal”? One of those people who are intentional about building others up?

It would make such a difference to people like us. It would make such a difference to the 1 in 50 and their families.

“So encourage each other and build each other up, just as you are already doing.”

1 Thessalonians 5:11

Hanging On and Letting Go

Half a year ago my tiny little boy, who (in my mind) was far too small to grace the steps of a yellow school bus, let alone the doors of an Elementary School, began his public school carrier. He had just turned three years old. Three!

You see, because he has this diagnosis of Autism, he is able to begin school early in hopes of getting him the structure, therapy, and help he needs early on so that later he might be able to integrate into a regular classroom setting. It makes sense… but it was terrifying.

I have quickly learned that by being a Special Needs Parent, there is a very peculiar balance of Hanging On and Letting Go.

I believe every parent wrestles with this to some extent, even with neurotypical children who have no disability. I am simply saying that (to me) there is something about having a special needs child that makes them seem more vulnerable and from this vulnerability comes an overwhelming desire to protect.

Let me explain with just a few examples:

- Ezra requires a lot of hand-over-hand and self-help. (Hanging on)

- He is very impulsive and requires constant supervision. (Hanging on)

- We do not know what the future holds for Ezra but we know that there is a possibility that he may be dependent for a very long time, or maybe forever. (Hanging on)

- We know he needs therapy and we search for the one that “seems right” and have to entrust him to the “experts” to help him as much as possible. (Letting go)

-Realizing that although he has many disabilities or delays, I cannot wrap him up in bubble wrap and keep him safely by my side. I must push him to try, push him when he fails, and push him to get back up and do it all over again. (Letting go)

-I am terrified to leave my mostly non-verbal child whose number one impulse is to flee, with anyone other than us, his parents.  However, there are times that I have to go somewhere or do something and I must trust another to help care for my little man. (Letting go)

This odd balance of Hanging On and Letting Go goes on and on. My heart tells me to protect and to shelter him but I know that I must push, teach, and let him experience the freedom of being a kid – as much as he possibly can.

I have realized that this crazy notion of Hanging On and Letting Go will probably forever be a part of our family’s life. But do you know what else I have realized? The Lord has gently reminded me that as much as I struggle with which things to “Hang On" to and “Let Go" of, the whole time He holds my baby in the palm of His hands.

Isaiah 41:10 says “So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.”

The Lord will uphold Ezra with His righteous right hand! I do not need to fear. I do not need to be dismayed. What better hands to entrust my child to, but than to the Lord’s?

When I remind myself of this, all of a sudden, this Hanging On and Letting Go tug of war that plays out in my heart is eased as I am reminded that He Is God. He is in Control. He is holding Ezra by His righteous right hand as my little one journeys to school, to therapy, and wherever else his little life may lead.

I continue to pray for wisdom and discernment when it comes to making life decisions for Ezra. I still do a lot of Hanging On (I mean really, he is only three years old!) but I am learning that Letting Go may be more an issue of the heart. Maybe I need to “Let go” of some of my fears, remembering that the Lord promises to offer strength and help. The Lord NEVER "Lets go", so that I can. He holds Ezra in the palm of His hands. Praise the Lord!

Ezra: Out of school and enjoying some summer fun!

Perfect Peace

“You will keep in perfect peace him whose mind is steadfast because he trusts in you.” – Isaiah 26:3

I have a confession. I have a very hard time memorizing scripture. No matter how much I want to have God’s word “hidden in my heart”, it just doesn’t come easy to me. It’s something I really have to work on.  So, I have adopted a little habit that helps me to memorize these little life-giving nuggets of truth. This habit is what my husband jokingly calls my “Unabomber Notes.”

I have scripture written on little post-it notes which are hidden all around our house (I guess you could call that Unabomber-ish). So, as I go through my day I can read these verses and as they encourage me, I am also memorizing them.

This verse- Isaiah 26:3 – has become one of my very favorite verses. In fact, I love it so much that if you were to visit my house, you would see it not only written above my kitchen sink, but also by my nightstand, in my car, and in my day planner.   

The reason this verse has had such a huge impact on my heart is because of a thought I had not too long ago. This was my thought:

On one of the rare occasions that my sweet boy (with Autism) is able to look up at me and actually make eye contact with me, what will he see? Will he see a mom that is Tired? Frazzled? Or Frustrated?  OR will he see a mom that is Peace-Filled? Content? And Joy-Filled?  What message am I sending both of our children? What do they see when they watch me?

You see, in Isaiah 26:3 the Lord says that he will “KEEP” us in Perfect Peace if our mind is steadfast because we trust in Him. I am so very convicted to be sure that I am constantly putting my trust in the Lord and meditating on His word- because that is the only way to “keep” in perfect peace.

If you have a child with Autism, then you know that most of the time, your house can rarely be described as peaceful. However, I am coming to understand that even though my life in general may not always be described as Peaceful- I can still be Peace-filled. That’s what I want. That’s the example I want to set for both of my children.

Thank you Jesus that you offer us Perfect Peace!

Our Special Treasure

More than talking, more than playing with toys appropriately, more than being able to walk independently, more than self-feeding, more than all of these things…the very most important thing I have prayed for is that my sweet Ezra would know Jesus. I do pray and trust that the Lord will reveal himself to Ezra, even if it is in his own special way. This is my greatest desire.

I love to find little opportunities to tell Ezra about the awesome things that the Lord has done and is doing in my life. Even if it is as simple as saying “Didn’t God give us such a beautiful day today, Ezra?”, I want to share those things with him. I constantly look to find ways to connect with our little man and for ways to share with him about Jesus.

 One of the ways that we have learned to connect with Ezra is through music. He loves to hear music, singing, instruments, and can show off some pretty fantastic dance moves as well. If you were to ride in our car or visit our home, you will most likely hear some sort of praise music in the background. Ezra loves music. His favorite tunes have changed over time. At first he preferred instrumental music and as time has gone on, he now prefers Veggie Tales, Baby Praise, and Nursery Rhyme Songs.

Over the last month or so, Ezra has shown a special interest in the song “Oh, How I Love Jesus”. Every time this song comes on, a huge smile comes across his face as he sways his head from side to side. This week, we had a very special gift. It was one of those “breakthroughs” that, as special needs parents, leaves you in awe and complete amazement. I would like to share our gift with you.

But, before you watch this video I would like to leave you with this: no matter who you are, if you know a special needs child, please do not ever assume that they do not hear you, see you, understand you, or notice you. You NEVER KNOW what they do/do not understand or how much is getting through. Don’t give up! Because every once in a while, they amaze you with special treasures such as this….

Uncertainties

There are many uncertainties when it comes to Autism. What is the cause? Is it something I did? Will there ever be a cure? Will my child receive the help he/she needs in order to be successful? Will my child be made fun of at school? Does my child know how much I love him/her? What would my child tell me if he/she could talk? What’s going on inside that little mind? What does his/her future hold? The list could go on and on and on.

With all these uncertainties it is so very easy for me as a parent to become completely overwhelmed by the What Ifs, What Wills, and Why Nots (the “three evil Ws”).  I let these uncertainties rise up in me until my heart feels as though it’s drowning.

There was one particularly hard day that I had had enough. I felt defeated by Autism and the “three evil Ws”. It wasn’t that Ezra was having an incredibly hard day, he was actually having a rather good day. But I have come to realize that just as my special needs child has those “bad days”, so do I. There are times where I just sit back and watch him and the uncertainties flood my mind; setting myself up for heartache and worry.  This day was no exception and I felt helpless.

So, I decided that instead of dwelling on all the uncertainties that Autism entails, I would make a list of certainties; the things I know without a doubt are true despite the grip that this syndrome has on my little boy.

What I am certain of:

-God has a purpose for my child and He will accomplish that purpose in spite of any syndrome or disorder my child may have.

- The Lord chose me to be the parent of my child. So, despite the fact that I may feel inadequate at times, I AM the perfect person for the job…the Lord chose me especially for my child!

-This is not our home. As a Christian, I know that one day we will trade in these earthly bodies for perfect ones. What a glorious day to see my sweet child and listen to him sing WORDS of praise to the Lord.

- The Lord will provide. The Lord will provide exactly what my child needs to accomplish his God-given purpose. We may or may not be able to afford the best of the best treatment or be able to go to every kind of therapy/program offered but the Lord will provide what we need in order to accomplish His special purpose for my child.

-God loves my child with a love far greater than I could ever comprehend. How much more must his heart break for my child and his frustrations and how much more must he rejoice with each triumph.

-The Lord never promised me “easy”. He did, however, promise that He will never give me more than I can handle. I must learn to lean on Him for strength.

- God is in control. He is on His throne. Nothing comes as a surprise to Him. He’s got this!

Such peace fills my heart when I remind myself of such certainties! I am so thankful for the peace of knowing that the Lord, my Heavenly Father, is in control!

Philippians 4:6 “Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”

Lighting It Up Blue For Autism Awareness

The Huggins family is Lighting It Up Blue for Autism Awareness! We are so thankful for our sweet boy! Having a child with Autism is not always easy but there are so many blessings to be had and so many sweet ways that he touches our hearts! Thank you Jesus!

Special Day For A Special Boy

Ezra had his first Special Olympics! He was a pretty happy little guy!

Love in a Different Language

Love is…

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

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

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

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

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

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

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

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

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

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

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

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

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

I See

Ezra doesn’t have many words. At least, not near as many words as other children his age. It’s just part of the whole package being “on the spectrum”. Communication has always been hard. 

Ever since Ezra was a little baby, when I sensed his frustration in being understood, I would hold him up right in front of my face and say “I see you, Ezra”.  It didn’t have an instant calming effect on him or anything spectacular but it was my way of letting him know that I knew he was there, I knew he was frustrated, and he had my attention. This has become something I do quite often. It also serves as a great reminder to myself…  See him. He is not just throwing a fit or being unruly. He is frustrated. He wants to be seen. He wants to be understood. Look past the hitting, screaming, spitting, and fighting…and SEE HIM. 

Eye contact has always been hard as well. However, even if it’s just for a split second, when I focus my eyes on my sweet boy’s eyes and tell him “I see you, Ezra”, he almost always will at least throw a small glance in my direction. 

The moments when Ezra lets me in to his world and we are able to share a laugh at something, when I am able to understand what he wants, or simply being able to make eye contact, these moments are priceless. I forever treasure them. On the days when Ezra struggles more I find myself watching with a sort of desperate curiosity… what is he thinking? What is he trying to cope with? I wonder why he does one thing and not another? How can I help? I think these questions are good. Never stop asking questions. Never stop trying to “see”.  

There is a part of Ezra that is locked away and trying so very hard to find its way out. Never stop asking the “I See” questions. I want to be sure that my sweet baby knows that “I See” past the behavior, “I See” a precious little boy, “I See” a boy that God has a specific plan and purpose for, “I See” his struggling, and “I WILL See” that he has all of the love, support, encouragement, and help that we can possibly give him.

Go figure that one of the few two word “sentences” that Ezra goes around saying is a repetitive “I see, I see, I see.”  I see you too sweet boy. I may not always understand, but I see you and want to learn more and more about you each day.  

Just a thought:  Don’t we all want to been seen and understood? No matter who you are, I believe we all have these desires. Aren’t you glad that the Lord sees us? He knows the desires of our hearts, our struggles, our triumphs… and despite knowing everything about us he loves us unconditionally. Thank you Lord, that you notice us and you love us! All of us. No matter what.