Families in Hiding

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The CDC recently reported that 1 in 59 children are living with autism.* For some, this may seem like a surprisingly staggering result. This news may even seem far removed; these children must not be here, in this town, where we live. But families like ours know better.

It’s true, children living with autism actually live near you. However, it’s also true that you may not have seen them. Because for many families of children “on the spectrum,” we are families in hiding.

We try to come out and join your ranks. We muster up our courage and attempt a store from time to time. Some days our children are successful with the stimuli of town and we are able to enjoy a taste of what it is like to take part in a family outing. Other times, we are less successful resulting in behaviors that cause others to stare as our courage quickly diminishes with every sideways glance and comments muttered under breath from people who simply do not understand.

One disastrous attempt to be a part of society can cause a special needs family to give up for a while. It’s all so real and all so raw. It’s just easier to stay home and find our normal and our happy away from the masses who are less than forgiving.

There are families in hiding in your community. They have almost forgotten what it is to be a part of a group of friends. Their children aren’t invited to parties. They cannot eat at restaurants. And with every failed attempt at finding a place within society, they shrink back and begin to wonder if it’s worth the heartache to try to belong.

Please understand, it’s not that we are trying to hide our special needs child away from the world. Our children are incredible and we would so love for you to see them as we do. It’s that often times, the world hides itself away from us. The world offers us glimpses of what it might be like to join in and even offers an obligatory invitation, but the world does not stand ready or equipped for families like ours.

So with every joke made at the expense of our child, with every parent who nudges their child to “go play with someone else,” with every school administrator who isn’t willing to believe in our child, with every church who has to apologize because they just “don’t have anywhere for your child to go,” and every store employee who stares and shows frustration when our children struggle in public…we shrink back into the safety of our homes.

What is the average person to do? How can you possibly reach out to special needs families who are in hiding?

When we can’t come to you, come to us.Our children are most successful in their own environment. They thrive on schedule, routine, and familiarity. You must understand that disability ebbs and flows. There have been times over the last eight years that our son is doing extremely well and there have been times where for his safety and the safety of others, we cannot leave the house. Trust us as parents to know these limitations.

It is because of this “ebb and flow” that our dearest friends come to us. We have bible study, we fellowship, we eat together, we laugh, and we cry together. It’s not flashy, but it’s so very fulfilling. They meet us right where we are at. They get down in the trenches of life with us.

Family members, don’t allow your feelings to be hurt when we cannot come to your family dinner or if we do not visit often. We would love for you to come join the beautiful mess that is often our home. It’s not that we don’t care or that we don’t desire connection, it’s that we can’t. Please come to us.

A little means more than you will ever know.You have no idea what an encouraging note, text message, phone call, or dinner made will mean to a family of a special needs child. Let them know that you are thinking of them. Share something about your day with them. Give us a connection to the outside world. Let us know we have not been left behind in your mind.

We have a nephew who periodically will draw a picture or write a letter to our son who has autism. Every time this happens I get choked up. They remembered us. They remembered our son. Our son proudly places the letter next to him while he plays with his trains. He knows and it’s important to him.

Let a special needs family know that you care, you notice them, and that their family has value.

It’s our job as special needs parents to never give up. We must keep trying to make a way for our children in the world. But the truth is, we could use your encouragement, understanding, and your friendship. That is what gives us the courage to come out of hiding to try again and again, until the world is ready to accept us.

*CDC Data: https://www.cdc.gov/ncbddd/autism/data.html

 

First Written for My Partners at Joni and Friends and Irresistible Church http://irresistiblechurch.org/families-in-hiding/

 

 

3 Questions The Church Should Be Asking This Month

The month of April is Autism Awareness Month. What does this mean for the Church? It’s time for the Body of Christ to evaluate how we reach out to those with special needs.

Here are three things the Church should be asking during Autism Awareness Month:

  1. Who are we reaching?

    I hope your church has a true passion for people. I pray you are a group of people who desire nothing more than to love God and share His love with others. I would expect to find that “Missions” is part of the heartbeat of the congregation. However, when the pew meets the pavement, what does this look like?

    I fear that it has become too easy for Christians to donate to a worthy cause, get the t-shirt, and walk away. It’s easier for us to open our wallets to help dig a well on the other side of the world than it is to give our time, change the diaper of a 10-year-old with special needs, or cry alongside the family who has just received a diagnosis. Donating to a cause demands very little from us. The latter is messy, it makes us uncomfortable, and it might take some commitment. But I can tell you this, there is a huge, unreached mission field right here in America.

    In 2012, the CDC conducted a study that estimated 1 in 68 children were affected by Autism Spectrum Disorder (ASD). [1]  It is also estimated that very few families who have a child with ASD attend church on a regular basis. So, whether we realize it or not, the autism community is affected by the Church. They are either embraced, loved, and accepted, or they are falling through the cracks. Dear Church, who are you reaching?

  2. Do we have a willing heart?

    Churches often ask how they can start a program for special needs children. They feel ill-equipped, have no budget, and honestly, they’re scared. Training, security, and activities are all essential elements of creating a program, but there is one thing you must have first: a willing heart. Church, you must develop a heart for ministering to those with special needs.

    I have visited churches with my own child who has autism. Some churches had state-of-the-art equipment, but the members did not have a heart for those with special needs. It was evident the moment we walked in. It made us uncomfortable to leave our child, so we didn’t.

    I have visited churches who had little more than a room of bean bag chairs and a teacher who fumbled through reading the Bible to the special needs children in her class. But the church had a heart for those with special needs, and they sought to include them in all that they did. They cared, so we stayed.  

    There are families out there who long to be accepted and loved. They want their child to belong, to be a part of a community. All we need is a willing heart.

  3. What happens if we do nothing?

    Simply put, nothing. The Church will continue being the Church. We are a beautifully broken group of people who gather under the banner of Christ’s grace and unconditional love. We will keep loving people, feeding people, worshipping, and growing. We will keep donating to missions. We will continue in our comfortable Christianity.

    But, we must also know that in our communities, perhaps in one of the very houses that line the street of our Church, there is a child who has autism. This child struggles to feel understood and accepted. This child’s mom cries herself to sleep as she fears for the future of her child. This child’s father is grasping to find peace in the midst of a life no one could have prepared him for. This family is searching. They are looking to be loved, and they are lonely. They are falling through the cracks. They are part of an unreached mission field, right under our noses.

    Dear Church, if not us, then who? We have a grand opportunity to be the hands and feet of Jesus. Let us embrace disability ministry and ultimately those who are hurting!  

[1] https://www.cdc.gov/ncbddd/autism/addm.html

First Posted at Irresistible Church Blog  http://irresistiblechurch.org/3-questions-church-asking-month/

Our Homebound Half-Summer: Special Needs Parenting

Just as my son wraps himself up inside a tunnel of weighted blankets, Autism crept in and wrapped itself around every fabric of his life leaving him trapped inside and overwhelmed. It seemed that every time he tried to overcome the impulses, aggression, and sensory overload, we would catch little glimpses of the boy we know is inside, only to watch this force called Autism overpower him once again.

He had been battling through these struggles common to Autism for a while. As a parent, it is the most heartbreaking thing to watch your child writhe on the floor in pain, want to hide inside a box so as to shut out the world, or to lash out in frustration because he so wants to be understood.

We were working intensively with his therapists, teachers, and doctors to help him through this extraordinarily tough time. We don’t know why this extreme behavior seemed to take over this last year. Some might say it’s the six year old boy hormones clashing with Autism. Other people might just say that Autism is not only a spectrum, but it is also a journey. This journey is full of ups and downs, trials and triumphs. Regardless of why, my child was struggling and we were going to do anything and everything we could think of to help him.

In the midst of this quest to help our son, May came, and then June. That’s the way it works. Before we knew it, we were thrown into summer.

I determined to be brave. I wanted both of my kids to have a wonderful summer. We were going to go walking, swimming, go to the park, and go get ice cream. I made a picture schedule. I made a social story for my son that told him about all the cool things we were going to do.

Without going into too much detail, it didn’t work. Oh, I could share a dozen stories of failed attempts. I could tell you about the morning we attempted to go for a walk through the neighborhood (me walking and my son being pushed in his stroller) and how I had to call someone for help as he had a meltdown that left us sprawled out on the gravel. I could tell you about the Sunday morning that we gathered up our courage and tried to go to church only to come home in tears with broken hearts. With each failed attempt, we retreated further and further into ourselves and our misunderstood reality. Before long, we were homebound.

The Autism journey can be a lonely one. I know this. I have felt this. I know of other families who have a child with special needs who have expressed feelings of isolation and loneliness. But nothing could have prepared my heart and mind for our homebound half-summer.

I wasn’t sad for me. I was brokenhearted that while other six year old little boys were camping, swimming, and biking this summer, my precious son was at home struggling. We continued to work hard with his doctors and therapists to bring him relief. But make no mistake, we were homebound. We did not go out to eat, out to swim, or out for a walk. We had family pick items up for us in town because we could not leave our son and we could not take him with us. We. Were. Home. I did my best to create a world of summer fun from my front door to the backyard gate. It was within the confines of this small area that we laughed, cried, snuggled, had meltdowns, and tried our very hardest to pull our son out of the overwhelming layers that Autism had seemed to wrap so tightly around him.

In the midst of all this, the Lord was gracious to teach me and speak to my heart. I want to take this opportunity to share a few things I learned during our homebound half-summer.

1. Not everyone understands, and that’s ok.

Throughout these six years we have watched friends come and go. Not everyone understands. This still stings a little, but not as much as it used to. There are a hand full, and I mean a tiny handful of people who are still walking through this journey with us. These are the friends who come sit on our living room floor and visit while Ezra drives his train on their leg like a train track. They don’t have to go out, go bowling, go to a movie, or require a fancy meal to spend time with us.  These are the friends who understand that if they come to us, they will experience the very best version of our son in his own surroundings, creating an environment conducive for visiting. These are the friends who pray for us and with us. These are the friends who do not pass judgment and trust that we (a least sort-of) know what we are doing and that we always have our son’s best interest in mind.

During our homebound half-summer, I was reminded of how thankful I am for the few who understand. Those living room talks, checking-up-on-me texts, and phone calls helped to keep me going during a season of great loneliness. I am thankful for their love and friendship even through our darkest times.

I was also reminded during this time that not everyone understands. As the parent of a special needs child, I am learning to let go of the stares, comments, and cold shoulders. I am reminded that our crazy life does not fit into everyone else’s fast pace life. Not everyone understands, and that’s ok.

2. My first ministry is to my family, even if it means letting go of many other things.

This summer, I had to let go. I let go of writing, I let go of blogging, I let go of keeping up with very many people, and I let go of keeping a super orderly house. I let go of many things. These are all things that I love, but I love my son more. He is worth it. Whatever it was going to take to help him through this difficult time was exactly what I was going to do.

 Keeping up with Ezra and his needs while balancing being a momma to our daughter and wife to my husband is a full time job. By the end of each day my body was physically exhausted and I was usually emotionally drained.

My greatest desire for my son during our homebound half-summer was to make sure that no matter what, he felt loved, understood, and that he knew we were not giving up on him.

My greatest desire for my daughter during our homebound half-summer was to make sure that she still had a wonderful summer full of love and laughter. June was hard for her as she watched her brother struggle. She began asking the “why?” questions about Autism and Ezra. She needed extra love and attention as she had a front row seat to the overwhelming force that Autism can be at times.

I had to ask the Lord to help search my heart for all the things that I should let go of in order to not only help my son, but to serve our little family as a whole. It got to the point that letting go was somewhat freeing. I knew each day that my focus was going to rest solely on my children, helping Ezra to overcome, and loving my sweet husband. It was enough, and it was good.

3. There is beauty even in brokenness.

Although I was brokenhearted to watch my son struggle, there were many beautiful moments. Every moment we made eye contact was priceless. Every hug and sweet kiss fueled my fire to keep pressing on. (Oh mamma’s, don’t take those hugs and kisses for granted; some of us wait and pray for such treasures.) Even during our toughest times, it would tug on my heart when my son was able to verbalize and cry out “Momma” in the midst of a severe meltdown; a tiny victory in the midst of a great storm. Every word said, direction followed, toy not thrown, glance in my direction, display of affection, and smile across his precious face made all the gut wrenching struggles worth it. The Lord was gracious to give me exactly what I needed when I needed it. Just when I thought I couldn’t cry another tear, my son would unexpectedly come over to kiss my cheek. There was beauty in the brokenness.

June sluggishly brought July and around this time, we were finally beginning to break free from the tangles that had so tightly bound my son. His doctors had worked with us continuously and we were finally beginning to have our Ezra “back” again. Things were not perfect, but we were able to venture out every once in a while. We took baby steps as we attempted to establish a new normal. We even braved a vacation to the beach that had been scheduled long before we ever knew we would be in the midst of such struggles.

As we began to try to acclimate our family back into society, we moved very slowly. We are still in that process. It feels as though it took all of July just to recover our strength and energy from all that June had to offer. With school just around the corner, we are gearing up for what we hope is a wonderful school year. This has been a long process, full of lessons, longings, and love.

There is something you should know, there are others just like us. There are countless families who have children with special needs and they are homebound. They cannot leave their home and they are lonely. Some have been homebound for much longer than just a half-summer. If you know one of these families, please reach out to them. May times people think we just “want our space.” This could not be farther from the truth.

If you are one of those families, I am sending you a hug. Press on dear parents. This road is a long and bumpy one, but nothing could ever compare to the triumphs (both large and small) along the way. This is a journey worth taking, a battle worth fighting, and a love like no other. Thank goodness God does not forsake us, even in the midst of a homebound half-summer.

To My Son's Special Education Teacher: We Need to Talk

Dear Special Education Teacher,

It’s time. I’ve been holding this back for far too long. We need to talk.

You see, I’ve been waiting. I’ve been waiting to see if you would do what many other teachers have done before. I was waiting to see if you would grow weary, lose hope, or just plain give up. As the parent of a special needs child, we are far too familiar with the disappointment of a discouraged teacher. Now, as the end of the school years is upon us, and as many Special Education classes have simply slipped into survival mode, here you are still pouring yourself out for our little boy.

I want you to know how thankful we are that you have not given up on our son this year.

You know better than anyone else that this has been a hard year. With every milestone crossed, there has been a new mountain to climb. With every behavior overcome, there was a new behavior that seemed to take its place. As it goes sometimes in the world of Autism, this year has been a never ending journey to try to help quench the insatiable need for sensory input and curb the overwhelming impulsivity that seems to try swallow our precious little boy.

It would have been so easy for you to give up. It would have been so easy for you to maintain a survival mode mentality. It is because of your refusal to give into defeat and your determination to not just allow my child to “pass through” your classroom, that we were able to confidently entrust our child to you each day.

So, now it’s time. We need to talk. I want to make sure you understand all the reasons why THIS was my child’s BEST year of school, even though it was the hardest.

Constant Communication

There were very few mornings this year that I did not drop my child off at school without my stomach being in knots or at least a few tears streaming down my cheeks. I knew that my child would be well taken care of, but I was just so burdened for him and for how his day would go. He struggled this year. As a Momma, when our babies are struggling, it’s just so hard not to worry.

Your constant communication was what helped me to get through each day. I knew that I would receive pictures of my child and sometimes even videos.  I knew that you would keep me updated on the good, the bad, and the ugly throughout the day.

Every afternoon when I got home from work, I would go straight to my child’s backpack to check his folder to see what you had written about his day. I knew that if for some reason you were unable to write in his folder that day, you were just a text or phone call away.

Teachers of Special Education Students sometimes lose sight of the fact that our children cannot tell us about their experiences at school. They cannot tell us what made them sad or happy. They cannot tell us about their huge accomplishments or things that made them frustrated. You, the teacher, are the only link between school and home. If you had not told me, I would have never known. Thank you for your constant communication.

Honesty

You’re a straight shooter, and I’m so thankful for that. While you have capitalized on my son’s strengths and celebrated his many accomplishments this year, you also shared his struggles with us.

I’ve heard the almost mechanical, half-hearted answer of “Oh, he did so great” from many caregivers and teachers before. They are afraid they will hurt our feelings. They don’t like yucky conversations. The truth of the matter is that my child’s well-being and future are on the line, and as the parent of a child with special needs, I don’t have time for flowery conversations if, in fact, not everything is “so great”.

 This year, Autism for our child meant struggles with aggression, impulsivity, and sensory integration, among other things. Your honesty helped us to gage what kind of help our son needed. Your honesty helped to shape his Speech and Occupational Therapy sessions at home. Your honesty helped his Neurologist and Psychiatrist to make informed decisions as they worked with us to help our son learn new coping mechanisms and as they worked to develop a plan that would best serve our child.

I truly believe that the open and honest dialogue we have had with each other this year is one of the main reasons that we consider this year to be a success. There is very little progress that can be made in the life of a Special Education Student unless the teacher is willing to honestly give feedback to the child’s parents. Thank you for your honesty.

Care and Compassion

It has occurred to me that no one outside of our home has a better understanding of our life, than you. Loneliness is a common struggle amongst families who have children with special needs. We wonder how on earth anyone could possibly imagine what our day to day is like. But you know. By having my child in your class, you are privy to an understanding of my sweet boy that others just are not able to have. It is what you do with this special understanding that makes all the difference in the lives of families like mine. And what you have done is show an abundance of care and compassion.

When people think of a Special Education Teacher, I’m not sure they envision the multiple times we have sat together in a dark room beside my sweet boy as he laid rolled up in his stretchy blanket on the floor, trying to calm down. I’m not sure people think about the late afternoon phone calls when my son has had a possible seizure and you are the only person I know to call because you’ve seen him have one before. I’m not sure people realize that the only constant with Autism is change, as you have helped my child meet his ever shifting needs by finding weight and then compression, light and then dark, water and sand, walking with the service dog and then sitting in his box. I’m not sure people think about all the many times you have called to check up on my boy, just to make sure he is ok after a hard day.

Teaching my child is more than a job to you. You have invested in my child and have truly cared for him and his success in your classroom. You were not content to just let him be. Each day was a new day and my son knew that you had not given up on him. You have cared, struggled, disciplined, celebrated, cried, pushed, and have poured yourself out for my little boy. You cared enough to challenge my son and you had compassion enough to love him unconditionally. Care and compassion are not things that can be taught when you go to school to become a teacher. You either have them, or you don’t. Thank you for the care and compassion that you have relentlessly shown our little boy, and our family.

It’s true, it’s been a hard year. I am so thankful that the Lord gave us you for this season in our child’s life. I know you must have days that are exhausting and discouraging. Press on dear teacher! You are making a difference and your hard work does not go unnoticed. Because of your constant communication, your honesty covered in love, and your care and compassion, I can say that this has been my child’s BEST year of school, even though it was his hardest. Thank you for loving him enough to not just settle. Thank you for not just surviving. Thank you for being you!

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!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Reminder

I want very much for my blog to offer encouragement to others. I also want to offer true understanding and insight into the life of a family with a Special Needs child.  With that being said, today I am allowing myself to be just a bit more vulnerable. Today I am allowing myself to confess to you that some days are just very hard. Not hard as in I-may-shed-one-glistening-tear hard, but more like I’m- going-to-do-the-ugly-cry-into-my-pillow-all-night-long-and-wake-up-with-racoon-eyes-for-work-the-next-morning hard.

Today’s topic came to light after one of my Love In a Different Language-reading-friends recently made this comment to me “I love reading your blog! You offer so much encouragement! You really seem to have a handle on life with Autism!”   Whoa.

First, I am so glad to know that someone besides my mom reads my blog! Secondly, I am so glad that my blog-reading-friend found encouragement in reading it. There are so many sweet ways that the Lord offers me encouragement on this journey of Autism and I love to be able to share that with others. However, I will admit to you that I certainly do not have a “handle on life with Autism.”

What I do have a handle on is this truth: I will NOT make it through this Autism journey without the help of my Jesus. Plain and simple.  And that, my friends, is because it can be hard. Very hard.

This past week was a very real reminder that life with Autism can be very unpredictable and challenging. Ezra had a rough week. A family member was sick and with all the back and forth visits to the hospital and interrupted schedule, Ezra struggled. What does it look like for a child with Autism to “struggle”? Well, for Ezra it means any combination of the following: screaming, crying, aggression, constant movement (as if he is on fire in his own skin), wants comfort but can’t stand to touch, touches but can’t control impulse to hit, spitting, throwing….it really just depends on the day.

Other moms who are further down this journey of having a child with Autism have told me that the first five years are without a doubt the hardest. I imagine that is probably right. You see, with a little one, you are starting from scratch. You have to find out what their “triggers” are. You have to discover what works to help pull them out of these “Autism meltdowns”.  And no two kiddos are the same! I have heard it said that “Once you’ve met one person with Autism, you’ve met one person with Autism.”  How very true. What works for my Ezra may or may not work for the next child with Autism. Therefore, life as my family knows it often times turns into a constant game of trial and error. I know this trial and error way of life will not last forever as we are little by little figuring out what “works” for our sweet boy.

I will tell you that there are many feelings of helplessness.  This past week, that is how I felt. Because I watched my baby struggle as I tried one thing after the other to try to comfort him, and nothing helped. We just had to wait patiently for about a full week for him to wake up “clear” and happy again.

I will tell you that there are many feelings of being alone. This is certainly not a ploy to achieve the highest level of Facebook friends or to beg for an invitation to your home for dinner. I’m just being honest. It is lonely. Yes, we are unable to go and do as others are able to go and do. And yes, some of our friends and even some family members feel “uncomfortable” around Ezra and keep their distance. But that’s not really even the kind of “lonely” that I’m talking about.  

This feeling of loneliness can come in even a large room full of sweet friends and loving family. It’s the kind of lonely that comes from feeling that there are very few who would or could understand your family and why you do the things you do, act the way you act, discipline the way you discipline, and how this thing called Autism effects every aspect of who you are. It’s the kind of lonely that comes from worrying: will he have a meltdown? Will he get upset? What is my plan if X happens? What is my plan if Z happens? And even if he IS having a good day- what if something sets him off?   This was a lonely week.

Please do not for one minute think that it is all heartache all of the time. On the contrary, I feel so very blessed to have been chosen to walk this journey with my sweet baby. There are so many wonderful and precious moments that I will forever treasure. The days when we “struggle” make the good days that much sweeter. I truly believe that parenting is a calling and I also believe that God equips the called! I do not take for granted the fact that God chose me to be Ezra’s mommy. I trust that He will equip me to be the best mom for Ezra that I can possibly be.

Yes, it is hard. No, I do not have a “handle” on life with Autism.  There is a lot I do not know and there are a great number of struggles that I could share with you. But don’t we all struggle from time to time? You may not be facing the same struggles I am, but I would venture to guess that you have a set of struggles all your own.

I will tell you that there is no way I could make it through this Autism journey without my dependence on the Lord. He is my source of strength. He is my source of joy. He continues to reveal Himself to me in sweet ways throughout the good days and bad.

Even this past week, in the midst of a very rough time, the Lord gave me such a special verse. “My ears had heard of you but now my eyes have seen you” Job 42:5. This verse spoke straight to my heart. This is my prayer for myself. I don’t want to just “hear” about the Lord and how awesome He is from other people. I want to experience and “see” it for myself on a day to day basis. I hunger for that. I need that. THAT is how I make it through this thing called Autism.

It is my prayer that through it all, good times and bad, that the Lord would continue to reveal Himself to me. I pray that I will “see” His grace, His love, and His mercy carry me through even the toughest of days.

It’s true. There is a lot of laughter, many tears, and much love in our home. It’s not always easy. But I am so thankful that “The Lord is close to the brokenhearted and saves those who are crushed in spirit” Psalm 34:18. I needed to be reminded of that this week. Maybe you did to?

This was our "happy" for the week. 

This was our "happy" for the week.