"Is It Ok To Ask God To Heal My Brother?"

Our morning began just like every other morning. There was not enough coffee drank, mismatched socks, lunch kits hurriedly packed, hugs and kisses, and the Frozen soundtrack belted out at the top of our lungs as we drove to school this Wednesday morning.

The pause between two songs brought an opportunity for my six year old daughter, Grace, to speak up. “Hey Momma,” she said almost questioningly (I turned off the music). “I want to ask you something but I don’t know if it’s ok to ask. It’s about Ezra.”  

Ezra is my precious four year old son, who has autism. All at once a rush of thoughts overwhelmed my heart. Grace knows she can always ask anything. I want to make sure she knows that she can especially always ask us about her brother. She needs to ask questions. Questions are good….I wondered what she was going to say.

“Grace, you can always ask us anything, especially about Ezra.” There was a long pause for thought as my daughter collected herself and breathed a heavy sigh.

“Is it ok to ask God to heal my ‘Ezra Brother’?” She continued, “Cause I’m beginning to think that he has a disease. I don’t think he understands us and I don’t always understand him, but I want to and I want him to too.”

Such heavy thoughts for such a little girl. My heart instantly began to ache. She had obviously wrestled with this question for some time. Her words streamed from her lips as though they had been stored up under pressure and now there was no holding back.

“Yes, you can ask God to heal Ezra. You can ask Him because He can do it. He is able to heal Ezra. But Grace, God may choose not to heal him and that’s ok too. We trust God. Grace, I want you to know that God does not ever make mistakes. I believe God knew that you would be the perfect big sister for Ezra. You have such a huge heart, you are so loving, and you help take such good care of ‘Ezra Brother’. You and Ezra are both perfect just the way God made you. We will love Ezra no matter what.”

 “Yes, I will love him no matter what too! But I just had to make sure that it’s ok to ask God for that,” she said very matter-of-factly.

“God wants you to come to Him with your questions, Grace. It’s ok to ask. I do think we should be careful how we talk about it in front of Ezra though. He does understand us sometimes; probably more than we realize. I don’t want Ezra to ever think that he isn't wonderful exactly the way he is.” We were pulling up to the school building.

“Yep! I agree! Dear God, please heal my ‘Ezra Brother’ and make him all better. I want him to understand me and I want to understand him too. I don’t like to see him struggle. I want him to know I love him. Amen.”  She seemed completely satisfied and relieved, like a heavy load had been lifted from her. She gathered up her things, gave me a kiss, and hopped out of the car as though we had been just chatting about ice cream.

I watched my happy-go-lucky girl bounce down the breezeway and into the school building…and then I let it go. I sobbed the deep sobs of a broken momma’s heart.  I sobbed the kind of sobs that leave one feeling depleted of any kind of energy. My heart was heavy for my daughter, for my son, and for this thing called Autism. Did I say everything that should have been said? There is no manual for these types of questions and I am certainly no expert in such matters. Such heavy thoughts for such a little girl.

Friends, let me tell you something. When sadness tries to grip our hearts, we have two choices. We can either allow sorrow to overwhelm our souls, or we can fight for faith from our Heavenly Father.

I knew what I needed. I needed Jesus. I needed Jesus and a Pumpkin Spice Latte (just being honest people).  So, I sat sipping my latte and had a good long visit with my Jesus.

Instant peace. The Lord so graciously brought to my attention all of the beauties from my seemingly overwhelming morning.

Faith. My daughter had demonstrated mature faith this morning. She wasn't asking me if God could heal her “Ezra Brother”, she just wanted to make sure it was ok to ask.  What a great reminder for me as well. I know that God is able, but sometimes I just forget to ask.

Hope. My daughter’s hope was not crushed. Do you know why? Because we serve the God of the universe who truly Is Able to heal. I didn't have to lie or offer up some cliché to cover up hopelessness. I was able to share truth with her. The truth is that God is all powerful, all mighty, healer, and He is in control. The truth is that He wants us to bring our hurts, requests, joys, and sorrows to Him because he loves us. The truth is that God’s plan is perfect. The truth is God does not make mistakes. I can boldly share hope with my daughter about her “Ezra Brother” because my God is good.

Love. The love that my daughter has for her special needs brother runs deep. It runs deeper than words, deeper than actions, and deeper than any diagnosis. She pursues Ezra will her love. She loves him enough to bring his name to the feet of Jesus and to ask for healing. She loves Ezra no matter what.

After finishing every last drop of my latte, removing the black smudges of mascara from my face, and trying to make myself look human again, I went about my day. As I thought more and more about our Wednesday morning conversation I became more and more thankful for it. I pray that seeds of faith were planted deep in Grace’s heart. I praise God for such precious children. I praise God that because of who He is, I can speak truth. I am thankful.

 It was "Western Day" at school last week. Ezra was not too sure about his pearl snap shirt, boots, or the camera! Grace tried to cheer him up!

It was "Western Day" at school last week. Ezra was not too sure about his pearl snap shirt, boots, or the camera! Grace tried to cheer him up!

Nothing Wasted

It was his shoes that first caught my eye. They were the light-up-when-you-walk kind of shoes and they looked very similar to a pair of shoes that my own little boy has.  Except, this little boy’s shoes weren’t lighting up. Both of his feet were fixed in a special kind of stroller and I quickly noted the braces coming up from his shoes and wrapping around his little legs. He was sort of laid back in his special chair and his momma was very busy about making sure he was positioned correctly and that he was comfortable.

I noticed how she very rarely looked up to make eye contact with the many people staring at her son. Instead, she just busied herself with him, though he seemed pretty content and comfortable. I felt a tug at my heart. I knew this scenario all too well. I wasn’t sure exactly what their story was, but I know what it is like to have a child with a disability and to have strangers stare and make comments.

The announcement was made for all pre-boarding passengers to begin boarding the plane.  This momma very carefully moved forward with her son in tow, and the rest of us pre-boarding passengers followed behind.  

I had prayed very specific prayers for my trip. If I was going to be traveling and giving up time with my precious family, then I wanted to be sure to make every moment count and for nothing to be wasted.  I had prayed specifically for whoever I might sit beside on the plane…not just because they had to sit beside me, but I prayed that there would be purpose in our meeting. I had prayed that I would sit beside others who I could learn something from or maybe others that I could pour into, encourage, or pray for.  Nothing wasted.

As I boarded the plane, I saw this mom and her son situated in their seats. I knew. I just knew that I was supposed to sit next to them.  I took my seat on the aisle and almost simultaneously, the momma shifted in her seat so as to block me from her son who was propped up next to the window. Protection: I recognized this gesture very well.

I wanted so badly to put her at ease. I wanted so badly to let her know that I was no stranger to this. I was so excited, literally bubbling over because all I could think was “Thank you Lord! Nothing wasted!” At the same time, I knew I couldn’t push. I knew I needed to give it some time. I knew that if I came out with “I am so excited to sit with you! Don’t you worry! I have a special needs child too! Did you know that I asked God for the opportunity to sit with you?! Nothing wasted!” …well, she would just think I was plumb crazy. So I waited.

About ten minutes into the flight the little boy began to whimper ever so slightly. His momma struggled to get his bag from the overhead compartment to get him a snack out. About this time, our stewardess whirled by and fussed at her harshly because passengers were not to be out of their seats. The momma began to explain that her son had just had spinal surgery, they were headed home, and he needed something to eat. The stewardess shrugged and walked off in a huff.  Frazzled. This momma became frazzled and understandably so. She fumbled with the snack trying to calm her son and get him something to eat…but she just didn’t have enough hands to do it all.

“Can I help?” I asked.  The momma politely said “no” but when the snack began falling on the floor and the little boy kept sliding down in his seat, she handed me his cup. Her eyes were misting as she said “some people are not very understanding.”  “No, they’re not. I’m so sorry,” I replied.

Finally, we began to talk. I learned that the little boy’s name was Peter. He was four years old, just like my little boy. Peter has a disease that is quickly causing his body to deteriorate.

I was also able to share with this momma about my two children and about the fact that my son, Ezra, has Autism. I literally watched this women transform from protective to relieved as we shared some common ground with one another.

We talked therapy, disability insurance, schools, and surgeries. (This is what we special needs parents do.) We talked every-day life, what it is like for the siblings of a special needs child, and we even talked about our dream vacation destinations.  My new friend had let down her guard. She was warm and easy to talk to.  She was very real and it was refreshing to visit with someone who understood “life” as we know it.

Then, I asked a question. I knew this question might shake things up a bit to ask, but I was willing to try.  “Does your family go to church anywhere?” I asked. I instantly watched the warmth be sucked right out of this momma and sadness was left in its place. “Our family isn’t welcome at any of the churches we’ve been to,” she said in a quivering voice. She went on to explain that many churches in their small community aren’t even wheelchair accessible, which immediately rules them out as options for her son to be able to attend church with his family. She continued explaining that the other churches their family of four had attempted to visit, met Peter with sharp glances, stressed out nursery workers, and even declarations of “we just can’t help your son here.” As this precious momma shared, I could watch a bitterness rise up in her; understandably so.

I wanted her story to not be true.  But I knew better. As she shared about one bad experience after another of all their family’s attempts to find a church that would accept them and their special needs child, memories of my own family’s experience visiting churches flashed through my mind.

I remember the dirty looks and stares. I remember the inconvenienced attitude of the nursery workers. I remember the panicked look on one of the volunteers face when she saw my child struggling into church one Sunday morning and she worriedly declared “Oh, Ezra’s here.” And I even remember the church-going man who was sure to let my husband know that he believes our son’s Autism is a result of sin in our (Ezra’s parents) life. No, many churches are not kind or welcoming to families like ours. I know this to be a very harsh and true reality.

Peter’s momma went on to explain that, although they very much would like to go to church, when they are having to fight for Peter to get a good education, fight for the doctors to give him the attention he needs, and fight for the insurance companies to cover all of his surgeries, the desire to fight for a church to welcome him had been long since lost.

Fighting is a way of life for special needs parents. How sad that (many times) we must fight for a place for our children in God’s house. The fact of the matter is, not too many parents of special needs children have enough fight left in them to try to find a church that might welcome the needs of their precious family.

Peter’s momma and I visited more. I was able to pray for Peter’s little body to heal and for his family. His momma prayed for me as well. It was a sweet time. I was so thankful to have met Peter and Peter’s momma. I hope that in some way she felt encouraged and not so alone on our big plane. I know I did.  Thank you, Lord. Nothing wasted. When our plane touched down, we went our separate ways. Peter was ready to be home where his daddy and little sister were waiting for him.

As I waited in the airport for my connecting flight, I thought about my visit with Peter’s momma. I thought about the sad fall in her countenance at the mere mention of church. It wasn’t that she had had a look of anger or hate, but rather a look of defeat. This should not be.

Church, we have an opportunity. Not a little opportunity, but a huge opportunity that beats in step with the very heart of God. We have an opportunity to welcome those who are often times cast aside by society. We have an opportunity to love those who are not always shown love by the rest of the world. We have an opportunity to take the fight out of life for just a moment, for those who must fight every single day of their life.

It all boils down to this: What kind of church are you? Are you a church that has fallen into the belief that everything must look pristine, rehearsed, and without flaw? Do you only welcome those who might bring something to the table? Are you more excited about a doctor joining your attendance than a person from the homeless shelter or maybe someone in a wheelchair? May I challenge you that church was never meant to be this way?

God’s love is all encompassing. He loves all of His children regardless of ability, disability, social status, or size of our wallets. He welcomes all of His children with open arms. Oh Church, that we would imitate the heart of Christ! Oh, that we would desire to do real-life with one another. When we do real-life, things get messy.  So, I pray for messy churches. I pray for churches that are willing to get into the trenches of life with the children of God. All of His children.

Our family is so thankful to have found a church that welcomes us and our son with open arms. Such churches do exist. Our church doesn’t have the latest and greatest equipment for special needs; it has a lot of opportunities for growth in this area. What it does have is a heart and developing awareness for special needs children. For a family like mine, this means the world to us.

Somewhere out there is a little boy named Peter.  Peter’s body is frail and his family has a lot on their plates. This family has a need. They have a need to be loved and accepted. They have a need to not be so very alone. There are countless others who may look different, act different, smell different, or even dress different, but they all have one thing in common: Their Creator, God the Father, loves them. He believes they have great value. He created them exactly the way they are for a purpose.

We have an opportunity, Church, to try our hardest to create a place of refuge for ALL to learn about the great love of our Heavenly Father. We have an opportunity, Church, to love deeply and to be the Bride of Christ we are called to be. We have an opportunity, Church, to leave nothing wasted. Nothing Wasted.

“This is my commandment, that you love one another as I have loved you.”        

John 15:12

 Perspective from 20,000 feet off the ground. Nothing wasted.

Perspective from 20,000 feet off the ground. Nothing wasted.

Alone in a Crowd

It can happen to any of us, and it does. It can threaten our grasp on reality, and it will. It makes us feel overwhelmingly unique in our struggles, though many times we’re not. It has the ability to suck the joy right out of our lives, and we let it. It’s the feeling of “Alone”.

I will be the first to say that I have allowed the feeling of “Alone” to take control of my life at times. The trouble is that when we allow “Alone” to take the wheel of life, it can be a very dangerous ride. “Alone” gives us a false sense of reality. Although our natural desire is to connect, we begin to build walls of protection around ourselves as “Alone” whispers, “No one else would understand”, “No one wants to hear about this struggle”, “What would people think about you if you told them?” , “Yes, you are completely alone.” So with each lie that “Alone” whispers, we add another brick to the wall of protection we are building around ourselves until we become trapped in a self-made fortress of loneliness, feeling cut off from the rest of the world, and longing for connection outside of its towering walls.

Yep, that’s me. As a little girl who grew up in a broken home, I built walls. As the victim of abuse, I built walls. As a young girl with an eating disorder, I built walls. My college years were a time of healing and a time to discover who I truly was in Christ. The Lord gave me strength to tear down some of those bricks that I had worked so hard to put up (my “hedge of protection” that in reality was a fortress of isolation).

I have found that in adulthood “Alone” still offers its fair share of opportunities for wall building. Financial struggle? Put up some bricks. Trouble at work? Put up some bricks. Struggle in a relationship? Put up some bricks. Job relocation? Put up some bricks. Health problems? Put up some bricks. Because surely “I am the only one going through this right now” and “No one wants to hear about this” and “No one would understand.”

I admit to you that just as quickly as I have found the strength to tear down walls of protection, I have just as quickly re-built them with new bricks handed to me by lies from “Alone”. Maybe you struggle with this as well?

But then something happened. Something forced me to decide whether I was going to allow myself to suffocate in self-built walls of protection and the feeling of “Alone” or to break down walls of loneliness and come to grips with the fact that we are all in some way struggling with something- I am not alone.

Our son was diagnosed with Autism two years ago. I cannot begin to describe the loneliness a parent can feel as the parent of a special needs child. I instantly began to build walls of protection with bricks handed to me by lies from “Alone.”

Who could possibly understand what it is like to hear your child’s unsettling screams deep into the night? To have the constant fear that he might elope? Fear of self-harm? Fear of him never being accepted? Fear of what his future might hold- or might not hold? Who could possibly understand how much effort and hard work it took you to change his diaper, brush his teeth, get clothes on him, keep clothes on him, and go somewhere? To watch him struggle? Who else has felt judgmental glances? Who else must try to filter through rude whispers about their child?

Who could understand the overwhelming joy you have when your child makes eye contact with you? Who could possibly comprehend the excitement of holding hands, the triumph of playing appropriately with a toy, or the praise that floods your soul when you make a connection with your child-no matter how small. There are tremendous blessings, joys, and triumphs of being the parent of a special needs child, but who else would understand or want to know about them?

And so the wall building began…I was very busy about appearing to have it all together while building walls of protection and buying into the lie that I was completely alone.

What’s sad is that in a world of social mediocrity, we can get away with this. It’s not hard to look fine, feel completely alone, and get away with it-without someone taking the time to ask, truly care, or invest. It seems we all have full plates, are too self-absorbed, and are too busy building our own walls to stop and ask how the other person is doing.

A friend of mine, who also happens to be the parent of a special needs child, recently wrote this after attending a Sunday morning church service, “So, it is possible to feel completely alone in a room full of people.”

Ever felt that way? Alone in a crowd? I sure have. But my friend’s comment got me to thinking… if she felt alone in her struggles that day, and I felt alone in my struggles that day, is it possible that there were hundreds of other people who felt alone in their struggles that day as well? Thousands? Millions?

And just before I let the walls of “Alone” overtake me, I decided to break free. Having a special needs child has been one of the hardest, most beautiful things that has ever happened to me. You see I finally realized, after a life full of wall building and buying into the lies of “Alone”, that the fact of the matter is: I am not alone.

Each of us have struggles, a past, wounds, triumphs, and joys. None of us are alone. But we are buying into the lie from the enemy that we are “Alone”. It’s the same enemy that the bible says is out to “steal, kill, and destroy” (John 10:10).  Do not let the lies of “Alone” steal your joy or your hope.

Maybe we could all stand to do some “demolition work” in our lives. To break down our walls of loneliness. To invest ourselves in other people’s lives. To have real conversations about real things with real people. I believe what we would find is that, in fact, we are not so unique in our struggles.

Maybe the church, as a body of believers, could stand to do some “demolition work” in the midst of its people.  To break down walls that “Alone” has worked so hard to build up. To unmask the hearts of its people and invest itself in authenticity. Because truly, the church was never meant to be a place for perfect people, with perfect lives, who handle life’s curves perfectly. I believe what we would find is revival.

Friends, do not buy into the lies of “Alone.”  You see, not only are you not alone in the fact that we all are trying to make it through this thing called life together, but I want you to know that God promises to never leave you or reject you! He goes before you. He wants to walk with you on this journey. The greatest desire of His heart is for you to have a relationship with Him, to talk to Him, to lean on Him, and to ask for His strength as you break down life-long walls of protection you have built around yourself. He so desires you that He felt it was worth giving His Son’s life for you.

God pursues us with His love and longs to fill up those holes in our heart that we mistake for opportunities to build walls with bricks handed to us by an enemy who’s goal is to destroy us.

Do not buy into the lies of the enemy! Do not lose your hope or your joy!  Stay strong in your faith. Take some time to invest in others, be authentic, be willing to share, and be open to accepting others just as they are. Dear friend, you are not alone!

Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you.”  Deuteronomy 31:6

 We took Ezra with us to Kids Camp last week. They were great about letting Ezra be "one of the kids" as much as he possibly could...including going down the water slide with his daddy!

We took Ezra with us to Kids Camp last week. They were great about letting Ezra be "one of the kids" as much as he possibly could...including going down the water slide with his daddy!

Autism Awareness: More Than Pennies in a Jar

Cashier: “Mrs. Huggins, would you like to make a donation to “Autism Speaks” today?”

Me: “No thank you, not today.”

Cashier: “Are you sure Mrs. Huggins? Every dollar donated goes to help a family affected by Autism!”

Me: (Smiling) “Oh, thank you for that. Actually, I am one of those families! My little boy has Autism. So, I guess you could say I make a pretty big donation every day!” (Insert awkward smile and laugh)

Cashier: (Responding in blank facial expression and harsh tone) “So, do you want to make a donation or not?”

Me:  “Nope.”

Please don’t judge me. If I had had some change or a few extra dollar bills that day, I might have donated to the cause. It’s a great one!

And as for my cashier compatriot, he was just doing his job. Maybe he needed to meet a quota. Maybe he doesn't even really know what Autism is.  But the irony of the whole situation struck me as sort of funny. Judging by the body language and harsh tone of my cashier compatriot, I believe it’s safe to say that although his store was helping to promote “Autism Awareness”, he just doesn't get it.

In case you were not aware, April is “Autism Awareness” month. You have probably seen collection jars at cash registers, heard a little more about Autism and statistics on the news, seen t-shirts with the Autism symbol (a puzzle piece), there have been  “Buddy Runs”, and possibly you have seen blue light bulbs (the slogan is “Light it Up Blue for Autism Awareness”). This is all so wonderful! I am so thankful for Autism Awareness month. I am so thankful that there is a month dedicated to helping others understand and support families who walk this Autism journey on a daily basis.

While all of this lends itself to great publicity and the raising of funds, my prayer as the parent of an Autistic child is that for every person who gives and listens that it would not just end there.

Autism Awareness is so much more than pennies in a jar, a puzzle piece t-shirt, or a blue light bulb. True Awareness is a change of heart. It’s the realization that not everyone is the same, and that’s a beautiful thing. Autism Awareness is not passing judgment, it’s acceptance and understanding that some are “different but equal”, it’s the true belief that everyone has been “fearfully and wonderfully made”. True Autism Awareness is thinking outside of our “Cookie Cutter Culture”, and embracing those who may live and act differently than what has been considered “normal”. It’s the understanding that every life has purpose and value. Autism Awareness is the knowledge that some people are facing some very large battles on a daily basis-and doing something about it. It’s digging deep, a shift in perspective, and the ultimate display of unconditional love.

Giving to organizations and institutions that help families affected by Autism is wonderful. We need these organizations and institutions. They are so very critical to families just like mine. But please don’t let that be the extent of your “Awareness”. Can I plead with you for a “heart-change”? Because I can tell you, as the parent of a special needs child, a “heart-change” is what our culture needs.

Love deeply. Be accepting. Be willing to shift your perspective. And be ready for your heart to swell with a new kind of love and “Awareness”.  True Autism Awareness could be a very beautiful thing!

  Lighting it up Blue for Autism Awareness!!

Lighting it up Blue for Autism Awareness!!



The Window

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There he sat starring out our living room window. He sat there for at least thirty minutes. Some of the time he was silent and some of the time he chattered away in his own little language. I wondered what he saw. I wondered what it was that had so captivated his attention.

It’s interesting isn't it?  It’s interesting how two people (regardless of ability or disability), can look out of the same window, and yet they see such different things.  

I love to keep my windows open. The first thing I notice when I look out my window is the sky. I love how the heavens declare the glory of the mighty God that I serve with their inaudible praise. Then, I might notice how the sunlight perfectly shines on each drop of dew on the grass. I notice the motion of the wind and I notice how the leaves have been swept across the drive from the night before. I take all this in and it refreshes my soul.

And so I wondered, on this day that my precious son sat beside the window, what is it that he sees? Because he cannot tell me, I speculate…Does he take it all in as one beautiful picture? Or does he look at each tiny detail? Every blade of grass? Every cloud in the sky? Does it bring joy to his soul as it does to mine, to marvel at the beauty of God’s creation each day? Or does it overwhelm him to take in so much? What does he see?

In many ways, this is what life is like when you have a child with Autism. You are both looking out the same window, and yet you are both seeing such different things. Ezra and I live in the same world, but the way we experience it is so very different.

As much as I want Ezra to see what I see, experience what I experience, feel how I feel, learn the way I learn, and love the way I love, it is not always that easy. What’s even more, who says that there is one “right” way to experience life? I have learned far more, grown far more as a person, and have developed a deeper level of compassion and love by trying my hardest to learn about Ezra’s world instead of demanding he conform to mine.

Certainly there is an importance for him to learn from an educational and behavioral standpoint. I am so very thankful for the group of amazing teachers and therapists that have rallied around our sweet boy to help him achieve his very best. But as he learns from us, we must never forget that there is so much for all of us to learn from him. He has a beautiful mind that is constantly at work. What a tragedy it would be for us to take for granted the blessing of a precious child because he does not fit into the cookie cutter of what society deems as “normal” or “acceptable”.

I want to become a student of my children. I want to see what they see when they look out the “windows of life”.

About a week after my little boy had sat so fascinated at the living room window, my little girl sat with her play computer at the very same windowsill and was “working” hard. I asked what she was working so hard on and she replied “I’m working on my blog”. (I have no idea where she got that from)

As she sat and banged away on the keyboard of her little toy computer, she began to “read to me” the blog she was working so hard to write…

“My brother has Autism. I don’t know why God let him have Autism. But that’s ok. I guess He let him have Autism so that I could help him and love him. Sometimes my “Ezra Brother” struggles, but I am here to help. The end.”

Grace lives in the same world as you and I. Grace sees the world differently than most six year olds do. Why? Because our family has embarked on a beautiful, but sometimes very hard, life-long journey of Autism. Grace’s experiences as the older sibling of a baby brother with Autism has caused her to think about things, pray about things, and see things differently than many children her age.

Sometimes, it’s good to try to “see” what others see when they look out the windows of life. We can all learn so very much from each other.  Our faith, our life experiences, our victories, and our defeats all contribute to how we each “see” life.  We would be wise to become students of one another. We would be wise to celebrate the beauty of a mind that “sees” differently.




Little Victories are Never Little

Our family loves Mexican food. LOVES IT. Like, probably in unhealthy proportions. Interestingly enough, one of the very few restaurants that Ezra will “allow” us to go to is a Mexican food restaurant. Of course, Ezra brings his toy trains along for our fine dining experience and will keep them lined up perfectly during our meal! 

We have been working very hard with Ezra to teach him to feed himself. It has not been easy and we still have a lot of work ahead of us…but we have come so far! We took this video of Ezra last week. Notice that he is not only feeding himself tortillas, but he is dipping them in guacamole dip! He doesn't like to get his fingers messy, so every time he does you will see that he wipes his fingers on either his shirt or in his hair...a mess I am more than happy to clean up later if it means that he is learning to eat independently!

Little victories are never little! We thought we would celebrate this BIG “little victory” with you all. Go Ezra Go!

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 barefoot trains.jpeg

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 in tub.jpeg

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 standing in chair.jpeg

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. 

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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!

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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!

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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. 

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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”. 

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! 

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!

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






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.

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Talk About Us Behind Our Back

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

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

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

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

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

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

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

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

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

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

Grace: “I know momma!”

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

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

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

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

Me: “Because God made everyone special and…”

Grace: “And he loves them very much!”

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

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

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

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

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

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

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

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

Itsy Bitsy Triumphs

Autism. The hard times are extremely hard, but even the smallest of accomplishments are cause for such great joy and excitement. These accomplishments are usually things that most people would take for granted, but when you have a child with Autism, you learn very quickly to take nothing for granted.

Today I would like to celebrate a few of Ezra’s latest accomplishments. These are just a few of Ezra’s Itsy Bitsy Triumphs in the last month or so.

-          Bottoms Up! Ezra has started to lift his little hiney up when I am changing his diaper. This may seem like a very small thing but it is not. This is one more small step towards gaining independence and shows a developing awareness in Ezra that he has not shown before!

-          Lead the Way! It is more and more that Ezra will grab our hand and take us to something that he wants or needs. Being able to communicate wants and needs is a huge step.  We continue to pair words with these items and pray that he will make those connections and eventually use words to express his desires.

-          Walk with Me! “Flopping” is a term often used in the Autism community. Maybe you have seen “flopping” before and you just didn't know what it was. Ezra struggles with “flopping” quite a bit. He is not able to tell us when he does/does not want to go somewhere, when he is overwhelmed, or is experiencing sensory overload. Children with Autism often times struggle with transitions too. Without the words to express his distress, he will “flop” to the ground and will usually start to whine, cry, or scream. Yes, this is a real term. No, not every child that you see laying on the ground in public is a spoiled brat in need of a spanking… It was not until this year that Ezra was even able to walk holding hands. We had to carry him everywhere or have him strapped in a stroller if we were out of the house.  Ezra has come very very far. Yes, he still “flops” occasionally, but more often than not, we can grab his hand and say “Walk with me”…and he does!

-          Music to My Ears!  Ezra loves music. He has some pretty groovy dance moves too! Ezra has learned several more songs and he loves to dance around the house singing them. And of course, the sound of my precious boy singing just fills this momma’s heart until its overflowing! His new favorite “playlist” is the following: Everlasting God, You are Holy, the Thomas Train theme song, and the Itsy Bitsy Spider (yes, quite the variety)!

It’s good to celebrate these things! I do want to make this one point…Ezra may not make eye contact very often, he may rarely respond if you call his name, he may seem in his own world for a majority of the time, but he has not made these little “baby steps of progress” by chance. He is developing an awareness because we talk to him about EVERYTHING. He is learning to communicate because we push him. He has begun to walk properly because we are showing him how. He knows songs by heart because we have sung them to him.  

Do you know a child with Autism? Interrupt their world. Talk to them. Don’t ignore. Teach them. They may seem to be in their own world, but they are listening, they are taking it all in, and they truly are learning…they are learning from you!

Let me tell you, the hard times are extremely hard, but the victories are so very sweet!

Now, I would love to share a video of one of this weeks triumphs. We jam to a lot of different tunes in our house. However, The Itsy Bitsy Spider is not one of the songs that we have been singing. So, to Ezra’s school teacher…this one’s on you! Thank you for interrupting his world. You gave him a new song this week!

Autism Awareness Alert: Notice how Ezra keeps the beat with his legs and by clicking his tongue (his own “beat boxing”)! 

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)

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!