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/

 

 

How You Have Blessed Our Special Needs Family

Do you know what a blessing you are? There you have been, standing in the gap, spurring our special needs family on. When it feels as though there is no place in the world for our children, you have been that glimmer of hope saying it might still be possible. It is because of people like you and the blessing you have been that we press on. 

To the friend who is always there for us, you are a blessing. You have blessed us by recognizing that you won’t always understand. You trust us as the parents of our special needs child and are never quick to pass judgement. Because you aren’t personally walking this special-needs journey, you are not quick to offer up advice, but rather you are a willing sounding board and prayer partner. Instead of reminding me to “take care of yourself,” you put words into action and lighten my load by picking up groceries for me or bringing our family a meal. You have blessed us with a friendship that is not dependent upon flashy vacations or the newest restaurant (because these are not our family’s reality), but rather a friendship that is deepened by prayers, tears, truth, and heart talks. You have blessed us. 

To the family member who wants to connect with our child, you are a blessing. You have blessed us by your willingness to listen instead of taking it personally when we try to explain the way our child “works.” You have included and not excluded. You understand that no two kids are alike (especially when it comes to special needs), and therefore you ask questions about our child. You have gotten on his level to play with him and made an effort to enter his world. You have been patient, and you have cheered him on as he grows and changes. Your thoughtfulness, consideration, love, and desire to connect with our son feeds our souls and fills our hearts. You have blessed us. 

To the church leader who welcomes my special needs child, you are a blessing. You have helped create a community of faith for my child who is often excluded by others. You have assigned him value, and by your example you show others what a blessing it can be to include those who are “different.” You believe the gospel is for everyone and walk this out in how you teach our child. Our son’s noises, singing, and loud laughter do not give you pause. You welcome imperfection because you know that God does his most beautiful work in the midst of the imperfect. Your heart for sharing Jesus with ALL children and your efforts to include our child allow us to come and worship. You have blessed us. 

To the teacher who believes in my special needs child, you are a blessing. There is a difference in being a teacher and teaching with belief. You believe. You look past our child’s weaknesses and capitalize on his strengths. Even on the weary days, you push him and never give up. You are in the fight with us: the fight for knowledge, the fight for inclusion, the fight for a better tomorrow. You have taken the time to see the heart of our child. And once you saw his heart, you refused to give up. We have watched the beauty of your love pour over our child as we have cried and planned and worked together to help him achieve his personal best. You have blessed us. 

Being a special needs parent can be lonely. Each of you have been there at just the right time, when God knew we needed you most. There are days in the life of a special needs parent that seem too hard and too big for us to handle in our own strength. Your presence has helped us through those days. My plea to you is this: keep doing you. The world needs your example of unconditional and selfless love.

First published by my partners at Joni and Friends and Irresistible Church  http://irresistiblechurch.org/blessed-special-needs-family/

Thank you to those of you who truly believe. You have made all the difference in our life and in the life of our child!

Thank you to those of you who truly believe. You have made all the difference in our life and in the life of our child!

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/

When You Feel Guilty For Talking About Your Life's Problems or Praises to The Parent Who Has a Child With Special Needs

You complain to me about work. You share with me about your child’s awards and accomplishments. You gripe about the lady who did your nails. You talk to me about money problems. You tell me about the plans for your next big family vacation. You worry about your kid’s grades. You share a personal prayer request. And then, you feel guilty for saying these things to me because I am the parent of a child who has special needs.

I know it’s true. I know it’s true because you all apologize to me. “I’m so sorry, I know my struggles are nothing compared to yours.” “I’m sorry, I shouldn’t burden you with these things. You have enough on your plate.” “Of course, I know this is nothing like what you are going through.” For as many real conversations I have with friends and family, I have probably received just as many apologies.

So, I am writing you dear friends, to set you free. I want to share with you exactly what I think about my life problems and your life problems, your life praises and my life praises, and why your feeling of guilt is unnecessary. I want you to know that we parents of special needs kiddos need you, and you need us too!

WE’VE GOT ISSUES AND SO DO YOU!

As I’m writing this, an old (revised) cheer is flitting through my head. “We’ve got issues, yes we do! We’ve got issues, how about you!?” But you guys, it’s the truth. We all have struggles.  Sure, some of my family’s struggles look different than other people’s because we have a child with special needs. But please remember this about us Special Needs Parents, we have jobs, some of us have other children, we have bills, we like to watch TV, we like to go shopping, we have interests, we have spouses who we love, we have spouses who sometimes drive us crazy, some of us are single parents, and ALL of us are just regular people like you. And, we’ve got regular-life issues; issues that have nothing to do with Speech Therapy, Disability Insurance, or Autism.

When a friend shares with me about her struggles, I do not feel resentment. The impression I get is that many of you think we Special Needs Parents are listening to you talk while we mentally calculate, “I can’t believe she is talking about this. This is nothing compared to my life and my problems.” Friends, nothing could be farther from the truth. When a friend confides in me, even if it is a struggle that I have not personally faced, it reminds me that others struggle too. There is a human bond of comradery. I so appreciate it when someone is real with me and does not feel that they need to somehow protect me from their life’s issues, because of my own. Yes, our family faces a unique set of hard struggles at times, but I am willing to bet that others of you are facing a unique set of struggles all your own. For lack of a better phrase, the struggle is real for all of us.

My fear is that you are holding back from us. My fear is that little by little we Special Needs Parents will become more and more isolated because others believe we have too much going on or too much on our plate. Believe it or not, in many ways, we are very much like you. We have not gotten so lost in a world of disability that we cannot see life outside of it.

So, let me free you from the guilt of sharing your struggles with us. Your sharing reminds us that we still have friendships. Your sharing reminds us that we are not alone in this thing called life. Your sharing makes us feel valued, because you came to us with a burden.

YOU’VE GOT PRAISES AND SO DO WE!

I would much rather measure life by the praises and not the problems. Wouldn’t you? I hope you have praises. I hope that you are able to see the fingerprints of God all over your life. I hope that you are able to watch the Lord, who gives every good and perfect gift (James 1:17), work in and through the very fabric of your everyday life. I hope you take time to celebrate the many blessings, accomplishments, and praises in your life, even in front of me.

I have actually had friends apologize to me for sharing about their child’s academic accomplishments. They thought they might be hurting my feelings because I have a child who has special needs. Again, nothing could be farther from the truth. In fact, it hurts so much more that anyone would ever feel that they need to hold back from sharing a praise, because we are Special Needs Parents.

You need to know that we Special Needs Parents are not watching you and measuring your many blessings against our “plight in life”. On the contrary, we wish for your success, we are happy for your children, we want you to enjoy your life, and we would love for you to share your praises with us. You also need to know that we Special Needs Parents have many praises of our own. We would love to share with you about our child’s many accomplishments. My son’s accomplishments may be different than your son’s, but the pride of a parent for their child is the same. You see, we are not so different.

The truth is, God has gifted each of us with our own lives and set of blessings. Comparison kills contentment, every time. Because we live in a culture that cultivates comparison, I can see how it would be easy for others to think that we Special Needs Parents feel uncomfortable with others sharing their life praises, particularly when it comes to their children.

So, let me free you from the guilt of sharing your praises with us. We would love to share in your joy with you. Your sharing offers us connection. Your sharing ushers in celebration. We feel blessed by the friendship that recognizes that we all have our own unique, God given blessings. We will praise with you and for you!

WE NEED EACHOTHER!

The cause for community is an important one. We “Special Needs Families” need you. We need your “regular life” to collide with ours. You help us keep our sanity. You keep us connected and help us to feel a part of society. What’s more, you need us too. Those who dare to invest in the lives of a “Special Needs Family” will find that we aren’t too far off the beaten path. Our lives are full of love, laughter, problems and praises, much like yours.

We want to rejoice with you over your child’s accomplishments. We want to cheer your family on as you enjoy a much needed family vacation. We want to intercede in prayer on your behalf. We want you to share your burdens with us so we can be there for you. We hope you will do the same for us!

I hope this helps in freeing you from the guilt of sharing your problems or praises with parents who have a child with special needs. We all need to have authentic relationships. We all need true, meaningful conversation. We want to share in this crazy, wonderful, messy, beautiful thing called life with you all.

 

 

Why You Should NOT Welcome My Special Needs Child to Your Church

I realize this may be one of the most controversial posts I have ever written. It has taken me months of writing, stopping, coming back, re-writing and I’m still not positive it’s perfect. But it is my heart. Every fiber of my being burns with passion over this topic. I want to share with you why you should NOT welcome my special needs child to your church.

I write this from what I believe is a unique perspective.  You see, I have worked in ministry for over ten years now. I have been on staff as a youth minister and a children’s minister. I have helped to develop a special needs program within a church setting. I have also been a teacher for six years collectively. I have taught classrooms full of children from all kinds of backgrounds, strengths, and weaknesses. Most importantly, I am a mother to two beautiful children, one of whom has Autism. That’s right, I am the parent of a special needs child.  So why on earth would someone with my background write a blog like this? Allow me to share my heart with you.  These are the reasons I believe you should NOT welcome my special needs child to your church.

-YOU SHOULD NOT WELCOME MY SPECIAL NEEDS CHILD IF YOU BELIEVE THE HOLY SPIRIT IS ONLY ABLE TO WORK IN THE HEARTS OF SOME PEOPLE, BUT NOT OTHERS.      Any good church goer would most likely read this and immediately say “Oh no! Not me! I believe the Holy Spirit can work in the hearts of all people! I would never limit what God could do!”  And I would challenge back with this: Many times we (the Church) say such things with our words, but our actions do not hold up.  Does your church offer anything for special needs children? Do you know? Instead of preparing a Bible story for special needs children, does your church place them in a nursery setting and give them a toy and some movies? As the parent of a special needs child, I beg you, please do not pre-determine who is able to be reached by the Holy Spirit.  Church leaders, I want to encourage you that your job as an ambassador for Christ is to prepare to the best of your ability, to teach God’s word, trusting that the Holy Spirit will do exactly what He has promised to do: “But the Counselor, the Holy Spirit, whom the Father will send in my name, will teach you all things and will remind you of everything I have said to you.” – John 14:26    You do not have to be a special education teacher to share about Jesus’ love with these children. You do not have to have sensory activity based learning, Bible centers, or offer ABA therapy. Your job is to present a sacrifice of your time and preparation, your love for others, and your love for Jesus…and share it.  Share it with children as best as you can. Tell them a Bible story, tell them about Jesus’ love and sacrifice for them, tell them how God created them with a plan and perfect purpose for their lives! And then trust that the Holy Spirit is going to do what He says He will do.  Yes, some parents of special needs children are just thankful for the respite of having a safe place for their child to stay while the rest of the family goes to worship. But why would the church want to miss out on the great opportunity of sharing Jesus with these special children? These are children who are often times excluded, laughed at, looked at, and pushed aside. For those of you who DO prepare a lesson for these precious children, thank you.  I want to tell you something very important: they are listening. They may not be making eye contact with you, they may be singing, spitting, or spinning, but they are listening. I firmly believe that God’s Word does not return void (Isaiah 55:11). It is not man’s job to determine who is able to be reached by God’s Holy Word. His Word is for everyone and His love is all encompassing.

-YOU SHOULD NOT WELCOME MY SPECIAL NEEDS CHILD TO YOUR CHURCH IF YOU BELIEVE THAT CHURCH IS NOT A PLACE FOR THE “MESSY”. It should always be for the great love of our Lord that we would want to present the Bride of Christ, the church, in the best way we can by taking care of church facilities. I understand this completely. But my heart breaks for the church that has lost sight of the God given mission of the Church. The Church was never meant to be a pristine, social gathering of perfect people sitting in Church bookstores or coffee shops. These outreach tools in and of themselves are fine, but let us never replace the gift of human compassion, connection, and our mission to serve with only tools. This I know: Jesus knew how to get messy. Jesus placed His hands into the wounds of the hurt, He surrounded Himself with the “unclean”, He loved the “least of these”, He cared for the broken, and He washed the dirty feet of the disciples. Jesus knew that ministry is messy. I can promise you this, special needs ministry is messy too. There is nothing very cute about changing a five year old’s poopy diaper. It is not very glamorous to wipe drool or to help change soiled clothes. My special needs son is not going to sit quietly during your Christmas Cantata and he very likely will hurl his sippie cup up on the stage in the middle of your sermon (it’s true, it happened). Welcoming those with special needs into your church will cause you to have to think about wheelchair ramps and points of accessibility.  Welcoming those with special needs into your church might be a little more noisy, might require more volunteers, might cost your church money, and it WILL be messy.  But Oh, dear Church, do not forget that Jesus loves and came to serve the messy. What if the Church began to serve “the least of these”? What if Church was a place where those who cannot care for themselves would be cared for? What if Church was a place where dirty diapers where changed, drool was wiped, and the outcasts were accepted? If Jesus, the Messiah, Lord of all Creation, came to serve the “least of these”, shouldn’t we? What if we have it all wrong? What if Church could be a haven for the “messy”?

-YOU SHOULD NOT WELCOME MY SPECIAL NEEDS CHILD TO YOUR CHURCH IF YOU DO NOT RECOGNIZE THAT “SPECIAL NEEDS” IS A MISSION FIELD. In the book of Matthew, Jesus gives his disciples the “Great Commission” telling them to “Go and make disciples of all nations…” (Matt 28:19). As the church, as Christians, it is our mission to share with others the unconditional love and grace of Jesus Christ.  We send out missionaries all over the world to share the good news of salvation. Praise the Lord! But did you know that there is a mission field, right here in America, that is not being reached? Did you realize it is estimated that nearly 90% of special needs families do not attend church? I can give you a pretty good reason why this statistic is what it is just based on personal experience. It’s so hard.  Did you know that most parents of special needs children who actually make it to church on any given Sunday have probably had much less sleep than you, many have faced several huge obstacles, and are literally hanging on a prayer that “this whole church thing works today”.  It’s hard to take your special needs child into a huge crowd because (usually) it overwhelms them. It’s the look of panic or sheer terror on the church worker’s face when they see your child bounding through the door. It’s worrying if the ministry workers will truly care for your child while you are at worship. It’s wondering if I can truly say “let’s go to church and learn about Jesus!” or if my child will actually just be sitting in a room while the volunteer nervously watches the clock. It’s wondering if anyone would actually be able to relate to you and your family. It’s worrying about the safety of my non-verbal child who cannot tell me how he was treated by those who care for him.  It’s wondering if you’re truly going to be accepted or just tolerated. My husband and I both grew up in church and are quite determined to have our family there each Sunday, but even for us, it can be discouraging at times. Dear Church, there is a mission field of tired, overwhelmed, and often times questioning people who are just waiting to be loved, included, noticed, and accepted. But let me warn you, this is not a mission trip that you can just donate to or visit for one week and walk away. If your church should accept the mission to minister to special needs families like mine, it will be a continuous labor of love. I beg you, Church, to not claim to have a “special needs ministry” unless it is truly the heartbeat and conviction of your church. I have seen what it is to have a church with a “special needs ministry” but it is not the passion of the congregation or the passion of the pastor. I have been the guest of churches who have a “special needs ministry” where there is no heart behind the ministry. Parents of special needs children pick up on this very quickly and for many, it is their first and very last time to “try church”.  I have visited churches that have an undeniable passion for special needs families. I have seen what can be when a congregation embraces this mission as their own. It can be a very beautiful thing! Special needs families just like mine are not welcome very many places. As a whole, public places are not our friend. Special needs families long for community and connection because it is rarely offered to us anywhere else. Would your church please pray about this widely un-reached mission field? If your church will not reach out to a family like mine, who will? We are falling into the cracks, unnoticed.

- YOU SHOULD NOT WELCOME MY SPECIAL NEEDS CHILD TO YOUR CHURCH IF YOU BELIEVE THAT GOD DOES NOT SPECIALLY CALL EVERY MEMBER OF THE BODY OF CHRIST TO SERVE. 1 Corinthians 12:27 says “Now you are the body of Christ and each one of you is a part of it.” If you are a Christian, then you are a part of the Body of Christ. If you are a part of the Body of Christ, then according to 1 Corinthians 12, you have a “part” or a job to do. You see, God has given all of us gifts and talents to be used for His glory. The Church is supposed to function as one body of believers with all of its different members serving through their gifts and talents for the sole purpose of glorifying God and furthering His kingdom. I am not a super gifted person, but even I have been given “strengths” in some areas.  These strengths or “gifts” as the Bible calls them, were not suddenly zapped out of my system when I birthed a special needs child. On the contrary, I, like many other parents of special needs children, have gifts that God says are important to the Church. What’s more is that I still greatly want to serve. I believe there is a supernatural, wonderful thing that happens when a believer is serving in the very way that God created and called them to serve. It fuels my heart and uplifts my spirit. It’s true, many special needs parents want to serve.  What is also true is that many times we are not able. We are desperately searching for a church that will allow us the opportunity to serve, a church that values us, a church that believes we have something special to offer. We are also desperately searching for a church that will look upon our special needs child as part of the Body of Christ…which means that he too has something very special to bring to the body. In many ways, special needs families are being “cut off” from the Body of Christ. Oh Church, please do not let this be! If the Church does not find a way to include special needs families, it will hinder any possibility of these parents or children being able to contribute to the Body of Christ within the Church. It will make it very hard for these parents and children to do the very thing that God has charged us to do.

The truth is, I wish you would welcome my special needs child to your church, but for many, there is a work to be done first. Please check your heart and the heart of your church. There are families slipping through the cracks…90% of special needs families to be exact. The Church has a great opportunity to be the hands and feet of Jesus. Who will take up this cause?  It will take work and preparation, it will be hard, it will be messy, and it is not glamorous. But, dear friends, it will be so worth it.

“The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’” –Matthew 25:40

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New Life through Death: Beauty Comes Through Times of Brokenness

As a parent, there are just some things that you try to shield your children from. You try your hardest to balance the realities of life with the truths of heaven, covered by a veil of protection from the depths of the pain and suffering that this world has to offer. There are times when God allows that veil of protection to be torn away and the fullness of tragedy and the frailty of this life come billowing in. Throughout these past few weeks, that’s exactly what has happened. There was no escaping what God had planned. There was no protecting ourselves or our children from having a loved one suddenly and tragically taken from earth. With all our inadequacies, we were forced to try to explain the unexplainable.

I am no great theologian, but I do know this truth: God has always been super at being Sovereign. You see, the same God that spoke the world into creation, who said “Let there be light” and there was, who created you and I, who knows how many hairs we have on our heads, who is the same yesterday, today, and forever, who spoke about prophecies that we are watching come to fruition before our very eyes, is the same God who allowed this tragedy in our lives. Do I understand it? Not at all. Am I heartbroken? Completely. Do I doubt God or His goodness? No. Do I believe God has a plan and a purpose for all of this? Absolutely.

And so it was with hurting hearts but unshaken faith that we began to explain to our daughter, Grace, about the terrible wreck that took who she considered her “Uncle Pasha” away. She cried and cried. She asked questions. Then, in an unwavering voice she said, “Well, I know where Pasha is. He is in heaven cause I know he loved Jesus.”

Grace has been asking deep questions about Salvation, our need for grace, God, Jesus, Heaven, and Hell for about the last year. We have spent a great deal of time sharing with her about faith and what it means to “ask Jesus into your heart.” We went slowly. Our greatest fear was that she would make a decision to become a Christian just because she thought we wanted her to. Our greatest desire is for our children’s faith to be their own. So, patiently and ever so carefully we have shared about Jesus with Grace. Grace knew all the “answers” but we have been waiting for the day when Jesus would cause her head and her heart to collide in a way so that she had to, wanted to, couldn’t wait to ask Jesus to be her Savior because she needs Him.

I watched Grace watch others. As much as we tried, there was no way to fully protect her from the sorrow and grief we all were feeling. Grace watched. 

As I was tucking Grace into bed one of these seemingly endless nights, she began to recount all that she had noticed. She had noticed how devastated and hopeless some people were grieving and compared that to others who seemed to be grieving their loss, while clinging to hope.  “I guess that’s cause the ones who have hope know Jesus and they know that Pasha is in heaven and they will get to see him again. Right mom?”   “Yes, baby. That’s exactly right.” I could almost actually see her little brain at work, processing and taking it all in.

We arrived early the morning of the funeral. We were very busy trying to prepare everything and to make sure that the “Celebration of Pasha’s life” would be everything it should be. I was busy just trying to hold it all together.  I watched my little girl stare at the wooden box at the front of the sanctuary. “Momma, don’t these peopleknow that Pasha is not in there? He is in heaven!” “Yes baby, we know.” Then, without hesitation she said, “Momma, I am ready. I need to ask Jesus into my heart.” There was about ten minutes until the service started.

Looking back, I cringe at my response. Ten minutes. That’s all we had. I was an emotional basket case and was trying my hardest to remain composed as I was about to stand in front of a room full of people and address them all. I didn’t want to rush with Grace. I wanted to have time to visit with her and pray together. “I am so excited that you are ready, Grace! Why don’t we visit about it after the service? We will have time then.”

We sat in a room full of people, gathered together in Jesus’ name. Just as the bible promises, God’s presence filled the room as we praised God for who He is, who Pasha was in Him, and for others to experience new life in Christ. God’s word says that He is near to the broken hearted, and that is just what He did- He was near.  In that moment, all the brokenness of our hearts met with all the goodness of God and it was a beautiful service. As the pastor invited people to come forward to pray and to do business with God, I felt a little tap on my arm.  “Momma, I gotta go forward. I gotta ask Jesus into my heart right now!”  It was almost as if Grace was politely saying Hey Mom, Im going forward to ask Jesus into my heart. You can go with me or Im going by myself! There was urgency in her voice and excitement in her eyes. It was time.

There, on the front step of the sanctuary, our sweet Grace prayed the most beautiful prayer we had ever heard. It was a simple prayer, wrapped in the faith of a child and the grace of God.  Our Grace asked Jesus to forgive her of her sins and invited Him into her heart. We cried tears of joy as Grace smiled the biggest smile and she radiated joy.

I’ve not heard of too many people being saved at a funeral, but Grace was. I praise God for the gentle way He has pursued Grace over these few years. I am so thankful for God’s promises and truths that we have been able to share with our daughter. Most of all, I am so thankful that God would use the life and testimony of Pasha as the final catalyst for Grace’s salvation.  I am so thankful for Pasha, this boy that we loved as our own, and for the life he lived. I am thankful for the great love and example that he shared with our little girl.

Grace has a new birthday now. She began her new life in Christ on March 11, 2015. I can’t help but think that as Grace’s name was written in the Lamb’s Book of Life, and as all of heaven rejoiced in her decision, that our sweet Pasha was there celebrating as well. We praise God that He can use tragedy to bring about something triumphant and blessings from brokenness. 

I firmly believe that God is not done using the testimony of Pasha’s life for His glory. I firmly believe that as God continues to write Grace’s life story, He will use her for His glory as well. Our God is not a haphazard or careless God. God is super at being Sovereign. It is in Him that we rejoice. It is in His hands that we place our broken hearts. It is in the hope and grace of the cross that we have the power to press on. It is by the blood of Christ that we are saved…including our sweet Grace. Hallelujah!

Grace Salvation.jpg

Celebrating Grace's spiritual birthday! We had cupcakes and wrote the date in her bible to celebrate her new life in Christ!

But Even If

I have spent a great deal of time listening lately. I have had friends come sit on my couch as they poured out their heart and I poured out mine. I have had phone calls and conversations that broke the barrier of superficial “how’s the weather” type talk. It’s refreshing when people are real. It’s refreshing to listen as well. As I have listened, I have felt such heaviness for many of our friends. It seems we all have our struggles, don’t we?

If you read my last blog post, Breaking the Silence, then you know that our family is also struggling through a tough time. The Lord has been so gracious to remind me of His never-ending love! He has surrounded our family with a loving church family, friends, and family members to encourage us along the way. Most of all, He has been teaching me that He is a God who Is Able! Let me share a little with you...

Most of us know the bible story of Shadrach, Meshach, and Abednego. We know that King Nebuchadnezzar built a large statue and ordered everyone to bow down and worship the image he created. We also know that he made a proclamation that whoever did not fall down and worship the image would “immediately be thrown into a blazing furnace” (Daniel 3:6).

So, having just heard the herald’s proclamation, Shadrach, Meshach, and Abednego knew they had a choice to make. These three friends, being resolved in their hearts to follow the Lord, refused to bow to the image that the King had set up. Of course, King Nebuchadnezzar was furious when the three would not obey his commands. He gave Shadrach, Meshach, and Abednego one more chance to bow down to the image he had created and warned them that if they refused again, they would be thrown into the blazing furnace. He finished his warning by saying “Then what god will be able to rescue you from my hand?” (Daniel 3:15).

And here is the amazing response of faith that these three friends gave to the king:

“If we are thrown into the blazing furnace, the God we serve IS ABLE to save us from it, and He will rescue us from your hand, O king. BUT EVEN IF He does not, we want you to know, O king, that we will not serve your gods or worship the image of gold you have set up.” Daniel 3:17

This response friends, is one of great resolve. They had it set upon their hearts that God was bigger than all of this! If He chose to deliver them from the fire, He was able. If He did not choose to deliver them from the fire, they were willing to submit themselves to the WILL of the Lord. “Lord, have your way with us!”

This response is one of great faith in a God who IS ABLE. Do you know that our God is able?!

These three friends were also willing to trust God with their “BUT EVEN IF”.  I am learning that it takes great faith to trust the Lord in a time of “But Even If.”  Here are some possible examples of “But Even If” situations…

-“Lord, please deliver my family from this financial pit we are in! …BUT EVEN IF You will not, Lord we trust You and we know that You will provide.”

-“God, please show us where our family is supposed to move right now! …BUT EVEN IF You will not, we are going to trust in Your timing and Your plan.”

-“Father, help me to find a new job and get out of this terrible work situation! …BUT EVEN IF You will not, I am going to resolve to be Your light and Your voice in the midst of this dark atmosphere.”

-“Lord, please give us a child! …BUT EVEN IF You will not, we will trust You because You are Sovereign, and because You love us with an unconditional love. So, we will trust in Your will and ask for Your peace.”

…I don’t know what your “But Even If ” is, but I want you to know that HE IS ABLE. Do you trust Him in the “BUT EVEN IF?”

I will tell you, very honestly, the last few years have been the most beautiful, hardest years of my life.

I don’t know about you but for me, it is not always easy, but it is easier to say “Lord, Your Will be done in my life! No matter the cost! No matter what it takes!” But when you bring your children into the picture, when their health or future is on the line…it brings forth a whole new kind of meaning to the words faith, submission, and trust.

If you read my blog very often, then you know a little about our son, Ezra’s story. You know he has Autism, you know just how much we LOVE this precious child, you know that he has taught us so much about life, love, priorities, and what matters most. You also know that this journey that my family is on is not an easy one.

Having a special needs child has caused me to learn how to pray bold prayers. I am unafraid to approach the throne of God with my heart. Because here’s deal, He knows the desires of our hearts, He knows our thoughts, and He collects every tear that we have cried! Yet so many times we are scared to share these things with Him. We act as though we are scared to boldly come before a mighty God and ask for mighty things in His name! I don’t know how a mother’s heart couldn’t break for the deep struggles of her child.

So I stand and I pray “Lord, would you please heal my son? Would you please give him words so that he can speak? Would you please take his frustrations away? Would you please take away his aggression? Would you please calm the storm that at times seems to be raging inside of him? Would you please calm him so that he is able to rest? And I boldly pray these things to You God, because I know and I trust that YOU ARE ABLE!”

...BUT EVEN IF you will not, then Lord, may my family be a living testimony of Your goodness and Your glory. Lord, Autism does not win! We are going to lean on You for the strength we need every minute of every day. We are going to call on Your name in the midst of Ezra’s aggression and ask for peace for our souls.  We are going to rejoice with You over the smallest of Ezra’s accomplishments. We are going to run to You when our hearts are breaking for our son so much that we cannot even utter a sound. Lord, use us! Use Ezra’s life to somehow impact others in a way that they would be drawn closer to You. As much as I love Ezra, Lord You love him with a love far greater than I could ever comprehend! So, I am going to entrust his future and his life to You. God you are bigger than all this! I am putting my trust in You. Whatever Your Will, it is well with my soul.”

Friends, do you trust the Lord with your “But Even If”?  I promise you, He Is Able! May He reveal His faithfulness, unconditional love, and grace to you in very real ways as you place your trust in Him!

Ezra and Daddy play guitar! Thank You, Lord, for moments like this!

Ezra and Daddy play guitar! Thank You, Lord, for moments like this!

Rapunzel and Pascal: Understanding Special Needs Siblings

 “Hey Mom, Ezra and I go to the same school! But Ezra rides on a little bus and you drop me off in the car. Did you know that I only have one teacher, but Ezra has a bunch of teachers? And did you know that I walk at school and Ezra rides in a red buggy? It’s like we’re the same, but different!  …Can I dress as Rapunzel for Fall Fest and can Ezra be Pascal? Cause He’s my lil buddy…”

This was the mostly one sided conversation I had this week while riding in the car with my five year old little girl, Grace, in regards to her brother. I kissed my sweet girl on the forehead as I pulled up to the school to let her out and watched as she bounced her way into the building. As I drove off, her words continued to play in my mind. Although said in complete innocence, my little girl’s words were very telling of how she is beginning to understand the differences between her and her little brother.

“It’s like we’re the same, but different!”  … Wow, very well said! Grace is very slowly beginning to understand more and more about her brother and this thing called Autism.

This has been an interesting process to watch. I know for myself, and for my husband, we are still figuring out life on the Autism journey. There have been feelings of grief and loneliness as well as feelings of great joy and thankfulness. So, can you possibly image how a young sibling would process the fact that their brother/sister has Autism?

A few weeks ago, I wrote a blog titled Talk About Us Behind Our Back. The idea behind the blog post was to encourage parents to explain to their children about special needs kids so that they might better understand how to treat them, react to them, and be their friend. I never dreamed that I would receive the response that I did. Remember, I asked you to talk behind our backs…but what I got were many emails, text messages, phone calls, and conversations. Most parents had the same question: What should I tell my kid about Autism? Or How should I go about explaining to my child about Ezra and kids like him?

Well, I’m no counselor and I am certainly no Autism expert. I am just a mom! But I would be happy to share with you what we have told Grace about her baby brother, Ezra.

Grace knows that her brother “struggles” sometimes. Grace knows that sometimes he acts differently, spits, has odd head movements, and very little language. These are all things that Grace has observed about Ezra. We have simply explained to her that -Yes, Ezra does act differently and he does struggle sometimes. We have also explained that it’s ok to be different and that God makes everyone very special and that He has a plan and a purpose for everyone no matter what. Yes, we have occasionally dropped the word “Autism” to Grace but you see, Autism is not who Ezra is, so we don’t really focus on this term with Grace as of yet. As Grace gets older, I expect for there to be harder questions and harder answers. From Grace’s astute observations in the car this past week, I can tell that she is putting the pieces together. She is gradually becoming aware of what it means to have a special needs sibling.

As Grace gets older, I watch her become more and more protective, understanding, and motherly in the way that she interacts with her brother. I often times have to remind her that she does not have to be the mommy or the therapist…just be the sister! I am thankful for the sweet heart that she has. She loves her “Ezra Brother” very much.

I ask the Lord often for wisdom and discernment when it comes to balancing a “neurotypical” child and a child with Autism. I want to explain things to Grace, but I do not want to overwhelm her. So, I concentrate most on helping Grace not to understand Autism, but to understand Ezra. I show her ways to connect with him, play with him, and love on him. I let her know that she is always welcome to ask questions. Questions are good. Questions breed knowledge, knowledge breeds understanding, and understanding dispels fear and brings forth relationship.

I will answer Grace’s questions as they come. In the meantime, I am interested in her innocent little observations. I am so thankful for the caring spirit she has with Ezra. I am thankful that she would even think to ask “Can I dress as Rapunzel for Fall Fest and can Ezra be Pascal? Cause He’s my lil buddy!” How cool is that?

Best Buddies waiting for Ezra's school bus!

Best Buddies waiting for Ezra's school bus!

All dressed up for Western Days at school last week! This was Ezra's first time to wear boots...he wasn't too sure about them!

All dressed up for Western Days at school last week! This was Ezra's first time to wear boots...he wasn't too sure about them!

The Courage to Try Something Wonderful

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

Something Worth Celebrating

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

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

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

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

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

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

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

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

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

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

Something Worth Celebrating!

Something Worth Celebrating!